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  We  would like to extend a warm welcome to you, and to those that make up your much needed support system.
     Cheri     &        Dee 
Sarcoidosis takes on many faces both Physical as well as Emotional
Knowledge is Essential in order for you to take an active roll in the treatment of this disease. We are as equally dedicated to the Emotional aspects of living with Sarcoidosis as we are with the physical aspects.
All About Sarcoidosis
Maintaining Your Joy
What is 
¿Que'Es La 
Sarcoidosis in Children
Sarcoid of the "Lungs"
Sarcoid of the "Eyes"
Sarcoid of the "Skin"
Sarcoid of the "Liver"
Sarcoid of the "Lymphatic System"
Sarcoid of the "Central Nervous System" CNS
Sarcoid of the "Heart" 
Medications and Treatments
Transplant Information
Coping with Anxiety
Depression, Has It Robbed You Of 
Your Joy?
Can Negative Emotions Be Overcome?
When Is Enough, Enough
Are Your Friends Disappearing?
Lonely In A Crowed Room
One Bite At A Time
Cultivating A Positive Attitude
Reduce Your Stress
Relaxing Techniques
Thinking So, Makes It So
Optimist Or Pessimist

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We are Delighted to Announce that we will
Begin  Publishing our Newsletter once again, as of a May 2002

Latest Edition
Laugh Yourself To Better Health
So You Need 
A Lung Biopsy
Life Will Be Better
Diagnosis Of Exclusion
Factors That Encourage Seizures To Occur
We are all winners!!
Handling low self esteem 
Is there hope on the horizon
What is your most diffcult task, and 
how do you handle it?
How do I handle fatique?
How I handle the possiblity that this disease may take my life?
How I handle the fears and the unknowns of this disease
How I deal with the ups and downs
How I handle pain

Founder Cheri
My Brother
Chris Bohn

Co - Founder Dee
In Memory of
My Father
Warren Ratcliff


What Is Sarcoidosis?
    Sarcoidosis is a disease that has an unknown cause. Usually,  the disease is not serious. It comes and goes, and then disappears. However, it can be serious in some people, and even cause death. 
         Most sarcoidosis patients do not even have any symptoms and probably never know they have the disease. It is not contagious. The disease can attack any organ of the body in any location, but is most frequently is found in the lungs. Pulmonary sarcoidosis can cause loss of lung volume (the amount of air the lungs can hold) and abnormal lung stiffness. Ninety percent of the cases of sarcoidosis are found in the lungs. 

          The disease is characterized by the presence of granulomas, small areas of inflamed cells. Granulomas can be either inside or outside of the body. They can appear on the walls of the alveoli (small air sacs in the lungs) or on the walls of the bronchioles (breathing tubes in the lungs). In pulmonary sarcoidosis, patients may have a dry cough (without sputum), shortness of breath, or mild chest pain. There also can be fatigue, weakness, and weight loss. These symptoms are common in many other lung diseases, so diagnosis may be difficult. 

          If pulmonary sarcoidosis is serious, it can develop into pulmonary fibrosis (the abnormal formation of fiber like scar tissue in the lung). This actually distorts the structure of the lungs and can interfere with breathing. Bronchiectasis can develop. This is a lung disease in which pockets form in the air tubes of the lung and become sites for infection. 

         In a majority of patients, the disease spontaneously disappears, and no treatment is necessary. Drugs called corticosteroids are the most important treatment used in fighting sarcoidosis. Sometimes a physician may prescribe steroids when there are no symptoms but just abnormalities seen on the chest x-ray and in lung function measurements. Other physicians wait for symptoms to appear before prescribing corticosteroids. 

  It is particularly important that 
sarcoidosis patients do not smoke. !!!!!
       Most sarcoidosis patients have no symptoms at all. In those cases where symptoms appear outside the lung, they include a scaly rash, red bumps on the legs, fever, soreness of the eyes, and pain and swelling of the ankles. These lesions can also appear as sores on the face or shins. Other sites are: skin, liver, lymph glands, spleen, eyes, nervous system, musculoskeletal system, heart, brain, and kidneys.
Source:  American Lung Association 

Dr. Sharma Fatique and Sarcoidosis

Another Fine Article On the 
Description Of Sarcoidosis

Sarcnet Has A Nicely Written
Article, That Is Brief,
And Easy To Understand

Please See Our Directory
For Other  Excellent Sites

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Technically Speaking
     Sarcoidosis is a chronic, multi system disorder of an unknown etiology characterized by the accumulation of T-lymphocytes and mononuclear phagocytes, non secreting epithelial granulomas and derangement's of the normal tissue architecture in affected organs. All parts of the body can be affected, but the organ most affected is the lung. Involvement of the skin, eye and lymph nodes is also common. A variety of infectious and noninfectious agents have been implicated, but there is no proof that any specific agent is responsible. However, available evidence is consistent with the concept that the disease result from an exaggerated cellular immune response (acquired, inherited or both) to a limited class of antigens or self antigens. 
      Cases of sarcoid have been described in both sexes, almost all ages, races and geographic locations. Females appear to be slightly more susceptible than males. There is remarkable diversity of the prevalence of sarcoidosis among certain ethnic and racial groups. In the United States, the majority of patients are black 10:1 to 17:1. Blacks are often younger than whites with the disease. In Europe, however, it affects mostly whites with higher prevalence in Sweden and among Irish females. It is most common between the ages of 20-40, but it can occur in children and in the elderly. Although it is rare in children, the disease is most frequent between 9 to 15 years of age. A small cluster occurs in children under age 4 years with one half less than 1 year of age. 

           Patients with sarcoidosis display a mixture of depressed cell mediated immunity and increased humoral system activity. The absolute number of circulating T lymphocytes is usually decreased. Levels of B lymphocytes may be normal or increased. The presence of increased T cells in the granulomas indicate that these are T-lymphocyte related granulomas. Measurement of the macrophage migration inhibition factor in patients wit sarcoidosis is further evidence of the presence of increased numbers of activated lymphocytes. Patients are usually alergic to skin test antigens. This deficiency of delayed hypersensitivity is persistent and often does not change when patients improve clinically. It has been assumed that replacement of lymph node tissue by sarcoid granulomas produces the lymphopenia and immune anergy dependent upon lymphocyte. Serum immunoglobulin levels may be normal but IgG is elevated in about half the patients. The humoral antibody response is not impaired and patients have no increased predisposition to infection as a result of T cell abnormalities. Serum complement, reflecting an acute phase reaction, may be increased in active sarcoidosis but are generally normal in sub acute and chronic cases. 

        Sarcoidosis is often acute or sub acute and self limiting, but in many individuals it is chronic, waxing and waning over many years. Sarcoidosis can be occasionally discovered in a completely asymptotic individual, but more commonly it presents abruptly over 1 to 2 weeks or the affected individual develops symptoms such as fever, malaise, anorexia or weight loss. These symptoms are usually mild but in 25% of the acute cases, these complaints may be extensive. Many patients have respiratory symptoms, including cough, dyspnea, vague retrosternal chest discomfort. Two syndromes have been identified in the acute group. The Lofgren's syndrome includes the complex of erythema nodosum and x-ray findings of bilateral hilar adenopathy, often accompanied by joint symptoms. The Heerfordt-Waldenstrom syndrome describes individuals with fever, parotid enlargement, anterior uveitis, and facial nerve palsy. The insidious form develops over months and is associated usually with respiratory complaints without constitutional symptoms. Chronic sarcoidosis occurs most commonly in patients with the insidious form. Ninety percent of patients with sarcoidosis have an abnormal chest x-ray at some time during their course. Approximately 50% develop permanent pulmonary abnormalities and 5-15% have progressive fibrosis of the lung parenchyma. Sarcoidosis of the lung is primarily an interstitial lung disease in which the inflammatory process involves the alveoli, small bronchi, and small blood vessels. These individuals typically have dyspnea, particularly with exercise and dry cough. Hemoptysis is rare, as is production of sputum. 

       Lymphadenopathy is very common in sarcoidosis. Intrathoracic nodes are enlarged in 75 to 90% of all patients; usually this involves the hilar nodes bilaterally, but some may only have unilateral enlargement,the paratracheal nodes are also commonly involved. Peripheral lymphadenopathy is very common, particularly the cervical, axillary, epitrochlear, and inguinal nodes. The nodes are non-tender, non-adherent, with a firm, rubbery texture. Unlike nodes in tuberculosis, they do not ulcerate. 

      Skin involvement occur in 25% of patients with sarcoidosis. The most common lesions are erythema nodosum, plaques, maculopapular eruptions and subcutaneous nodules, Similarly, eye involvement also occurs in 25% of patients and it can cause blindness. 75% of those patients have anterior uveitis and 25 to 35% have posterior uveitis. 

         The sarcoid arthropathy in children 5 years and older closely mimic those of JRA. The skeletal involvement in sarcoidosis has been reported with the most common sites being the hands and feet. Patients often complain of morning stiffness and pain and demonstrate limitation of motion. The bone lesions are variable size cysts, osteopenia and punch out lesions. Hepatomegaly and splenomegaly may present in 40% of all children. Parotitis occur in a minority of cases but should alert the clinician to the diagnosis. Cardiac involvement may be evident as a conduction defect on electrocardiogram. Central nervous system changes have been described, including diabetes insipidus and seizures. The most common presentations of neurosarciodosis relate to meningeal, hypothalamic and pituitary involvement. Cranial nerves involvement is commonly reported with the facial palsy as the most common. Myelopathy and peripheral neuropathy can also occur. Renal involvement is rare, however, these children are at risk for the development of nephrocalcinosis which may be asymptomatic. Serum and urinary calcium levels probably contribute to this development, but other factors are likely to be involved


Organ Involvement

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Sarcoidosis In Children

     If  I have Sarcoid, Can I get Pregnant, and What effect will it have on my child? If I am being Treated while pregnant, what effect will it have on my child?

     Although severe sarcoidosis can reduce the chances of becoming pregnant, particularly for older women, many young women with sarcoidosis have given birth to healthy babies while on treatment. Patients planning to have a baby should discuss the matter with their doctor. Medical checkups all through pregnancy and immediately thereafter are especially important for sarcoidosis patients. In some cases, bed rest is necessary during the last 3 months of pregnancy. 

Source For Article Above:
        Sarcoidosis in children is usually self-limiting disease that resolves over two to three years and some patients may require no therapy. On the other hand, patients with progressive pulmonary impairment, uveitis, myocardial disease, central nervous system disease and hypercalcemia, hypercalcuria or renal impairment will need therapy as soon as the diagnosis is made. Some consider disfiguring skin lesions and arthritis as relative indications for therapy. Prednisone 1-2mg/kg per day for several weeks to be tapered to an alternate day regimen. In older children, maintenance therapy of 5-15mg every other day is often successful. 

         The prognosis is more favorable than in adults but is generally less favorable in symptomatic patients. Mortality in childhood sarcoidosis has been reported in 5%, however, long-term sequelae may occur in 10-20%. The average duration of symptoms at time of diagnosis is approximately 6 months. The presence of skin lesion may be a sign of poor prognosis. The degree of pulmonary involvement is not always indicative of the ultimate prognosis. In addition, pulmonary function tests correlate poorly with histologic severity, and the initial values do not predict the course of the disease. 

      For children under 4 years of age, sarcoidosis is characterized by the clinical triad of rash, arthritis, and uveitis. Pulmonary complaints are infrequent but lung disease may develop years later. Sarcoid arthritis is persistent and nondestructive, affecting predominantly the large joints. Skeletal and eye involvement seem to be more frequent in this age group. Posterior synechia, uveitis, optic atrophy, miliary retinitis, and granuloma of the conjunctivae and optic nerve have all been described. Firm, painless, movable sarcoid nodule of the lower cul-de-sac, and rarely the bulbar conjunctiva may be present. Uveitis may be the initial and dominant manifestation of the disease. The activity of uveitis does not necessarily parallel that of the joint disease and may produce few symptoms. However, the most devastating complication is secondary glaucoma. 

             Biopsy remains the most important diagnostic procedure in children with sarcoidosis. Enlarged lymph nodes are an appropriate site for biopsy, but if none is present, biopsy of the scalene fat pad is most likely to reveal a lesion compatible with sarcoidosis. A conjunctival biopsy is good when typical nodules are present but the yield drops from 75% to 25% when they are absent. An enlarged parotid, skin, liver, muscle, tendon sheath, and minor salivary glands have all been biopsied. The classic biopsy finding is a noncaseating granuloma composed of epithelial cells and occasional Langerhans giant cells, lymphocyte, macrophages, and fibroblasts may surround the granuloma. Inclusion bodies are frequently observed within giant cells.

      The presence of skin anergy is typical but not diagnostic of sarcoidosis. The Kvein-Siltzbach skin test consist of the intradermal injection of heat-treated suspensions of sarcoidosis spleen extract. In a positive reaction, a slowly enlarging granulomatous papule appear at the injection site, usually reaching its largest size (3-8cm) in 4-6 weeks. A biopsy then yields sarcoidosis-like lesions in 70-90% of individuals with sarcoidosis with less than 5% false positive. However, the material is not widely available, and with the use of transbronchial biopsy for diagnosis, the Kveim-Siltzbach test is no more in general use. 

       Hypergammaglobulinemia can occur in 75% of children with sarcoidosis. Eosinophilia is present in up to 50% of older children. Hypercalcemia is noted in less than 20% of cases, however, hypercalcuria may still be present even when serum calcium is normal. Other possible laboratory abnormalities include leukopenia and elevated sedimentation rate and alkaline phosphatase. Serum angiotensin converting enzyme levels are increased in 75% of adult patients with sarcoidosis and decrease with corticosteroid therapy or resolution of the disease. Pulmonary function tests may show restrictive, obstructive or a combination pattern. 

      The most common radiographic finding is bilateral hilar lymph node enlargement, frequently with right paratracheal enlargement, but normal lungs. Other patterns of lung abnormalities include milia-size densities, micronodular lesions, large confluent mass lesions that may progress to cavitation, interstitial fibrosis, and a pattern resembling pulmonary edema and called "alveolar sarcoid". Gallium scanning is a sensitive but unspecific method for revealing pulmonary sarcoidosis. Gallium uptake over the orbits or parotids is not specific either, however, a concurrently increased uptake by the orbits, the parotids and the lungs has been considered characteristic. 

Source Of Artical Above:

Case Study Of Infant Sarcoidosi

Sarcoidosis In children
"National Jewish

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Clark KS. Sarcoidosis in children. Ped Derm 4: 291-299; 1987 
Gotoff SP. Sarcoidosis. In Immunologic Disorders in Infants and Children. Seconded. 
Karma A. Assessment of activity of ocular sarcoidosis by gallium scanning. Br J of Oph 71: 361-367; 1987. 

Nocton JJ. Sarcoidosis associated with nephrocalcinosis in young children. J of Ped 6: 937-940; 1992.

Scott TF. Neurosarcoidosis: Progress and clinical aspects. Neurology 43: 8-12; 1993. 

1. Crystal RG. Sarcoidosis, in Isselbacher KJ, Braunwald E, Wilson JD, Martin JB, Fauci 

AS, Kasper DL (eds). Harrison’s Principles of Internal Medicine, 13th ed. New York. McGraw-Hill, 1994. pp. 1679-1684. 

 Bardinas F, Morera J, Fite E, Plasencia A. Seasonal clustering of sarcoidosis. Lancet 1989;2:455-6. 

Adams RD, Victor M, Ropper AH (eds). Principles of Neurology, 6th ed. New York. McGraw-Hill, 1997. pp. 720-722. 

Delaney P. Neurologic manifestations in sarcoidosis: Review of the literature, with a report of 23 cases. Ann Intern Med 87:336, 1977. 

 Siltzbach LE, James DG, Neville E, et al. Course and prognosis of sarcoidosis around the world. Am J Med 57:847, 1974.

6Stern BJ, Krumholz A, John SC, et al. Sarcoidosis and its neurological manifestations. Arch Neurol 42:909, 1985. 

 Scott TF. Neurosarcoidosis: Progress and clinical aspects. Neurol 43(1):8-12, 1993. 

 Cariski AT. Isolated CNS sarcoidosis. JAMA 1981;245:62-63.

 Spencer N, Ross G, Helm G, Madison J, Urich H. Aqueductal obstruction in sarcoidosis. Clin Neuropathol 1989;8:158-161. 

 Day AL, Sypert GW. Spinal cord sarcoidosis. Ann Neurol 1977;1:79-85. 

 Sauter MK, Panitch HS, Kristt DA. Myelopathic neurosarcoidosis: diagnostic value of enhanced MRI. Neurology 1991; 41:150-151.

Terunuma H, Konno H, Iizuka H, Yamamoto T, Iwasaki Y, Youshimoto T. Sarcoidosis presenting as progressive myelopathy. Clin Neuropathol 1988;7:77-80. 

Vighetto A, Fischer G, Collet P, Bady B, Trillet M. Intramedullary sarcoidosis of the cervical spinal cord. J Neurol Neurosurg Psychiatry 1985;48:477-479. 

Clifton AG, Stevens JM, Kapoor R, Rudge P. Spinal cord sarcoidosis with intramedullary cyst formation. Br J Radiol 1990;63:805-808. 

Oksanen V. Neurosarcoidosis: clinical presentations and course in 50 patients. Acta Med Scand 1986;73:283-290. 

Israel H, Gushue G, Park C. Assessment of gallium-67 scanning in pulmonary and extrapulmonary sarcoidosis. Ann NY Acad Sci 1986;465:455-462. 

Shultz T, Miller WC, Bedrossian CW. Clinical application of measurement of  angiotensin-converting enzyme level. JAMA 1979;242:439-441.

Nosal A, Schleissner LA, Mishkin FS, Lieberman J. Angiotensin-I-converting enzyme and gallium scan in non-invasive evaluation of sarcoidosis. Ann Intern Med 1979;90:328-331. 

Kavannaugh AF, Andrew SL, Cooper B, Lawrence EC, Huston DP. Cyclosporin therapy of central nervous system sarcoidosis. Am J Med 1987;82:387.

Chapelon C, Ziza JM, Piette JC, et al. Neurosarcoidosis: signs, course, and treatment in 35 confirmed cases. Medicine 1990;69:261-276.

Gelwan MJ, Kellen RI, Burde RM, Kupersmith MJ. Sarcoidosis of the anterior visual pathway: successes and failures. J Neurol Neurosurg Psychiatry 1988;51:1473-1480.

Luke RA, Stern BJ, Krumholz A, Johns CJ. Neurosarcoidosis: the long-term clincourse. Neurology 1987;37: 461-463. 

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¿Que'Es La 
       La Sarcoidosis, Linfogranulomatosis Benigna o Enfermedad de Besnier, Boeck y Schaumann está considerada como una alteración granulomatosa multiorgánica, de causa desconocida, en el que se produce un incremento en los procesos inmunes celurares de los órganos afectados, que suele evolucionar hacia una resolución espontánea, o bien en la mayoría de los casos suele responder favorablemente al tratamiento esteroideo. 

      Dicha enfermedad fue descrita hace aproximadamente 120 años por un tal Hutchinson, y pese a todos los adelantos tanto técnicos como farmacológicos, su etiología (causa de la misma), evolución y pronóstico son hasta la fecha desconocidos. 

       La Sarcoidosis es en general una enfermedad de carácter universal, si bien los casos y su frecuencia varían de un lugar a otro, tal vez debido a desigualdades climáticas, étnicas, económicas, sanitarias, etc, no suelen existir dos casos iguales. 

     En España, unos primeros estudios arrojaron las cifras de 0,40 casos cada 100.000 habitantes, pero parece que posteriormente se han alcanzado cifras de 1,2, tasa más cercana a la media en países europeos. 

     Pese que que la enfermedad puede presentarse a cualquier edad, se suele dar con más frecuencia entre los 20 y 40 años y con mayor preferencia en sexo femenino. 

      Hasta el momento sigue siendo desconocida, aunque gran variedad de agentes infecciosos, e incluso no infecciosos (pólenes, maderas, virutas, etc) pueden ser la causa, aunque según estudios más recientes, parece que la primera sea la más lógica y probable.

      Se cual sea la causa de la Sarcoidosis, parece ser una respuesta inmune anormal, ya sea heredada o adquirida, a ciertos estímulos antigénicos. 

       Actualmente, se cree que la Sarcoidosis es una respuesta inmune anormal a estímulos de diverso tipo. El resultado final es la formación del denominado granuloma epitelioide, pudiéndose generar un proceso de fibrosis con destrucción, ya sea permanente o bien irreversible de la arquitectura celular tisular implicada. 

           Estos granulomas tienen la característica de metabolizar y segregar sustancias como la denominada ECA (Enzima Conversora de Angiotensina), siendo esta uno de los índices a tener en cuenta a la hora de observar la evolución de la enfermedad. 

      En general la evolución de esta respuesta, puede conducir a la fibrosis o daño estructural irreversible. 

Anatomía Patológica: 
      La lesión fundamental es el granuloma sarcoideo, siendo un agregado de células, más o menos compacto y localizado. 

     En el curso de su evolución, estos granulomas pueden permanecer inalterados y estáticos durante años, o bien desaparecer prácticamente sin dejar secuelas o cicatriz residual. En otros casos pueden proliferar, extenderse y hasta incluso fusionarse. En una fase final, se puede desencadenar una fibrosis progresiva, dando lugar a trastornos funcionales. 

Manifestaciones Clínicas:
     Dado que la Sarcoidosis es una enfermedad multisistemática, se pueden producir lesiones en casi cualquier órgano. 

     En general se distinguen dos formas de presentación de la enfermedad: Aguda y Crónica. 

1.Aguda: Suele darse en individuos jóvenes, y suele caracterizarse por su naturaleza benigna y que tiene a resolverse de modo espontáneo y sin necesidad de tratamiento. 

2.Crónica: Se observa en individuos de edad más avanzada, y por norma general suele afectar a varios órganos simultáneamente.

     Se establece con seguridad cunado unos datos clínicos, radiólogicos y de exploración funcional respiratoria, se apoyan en la demostración histológica de granulomas epitelioides, no caseificantes, dispersos en más de un órgano. 
  Marcadores de Actividad: 
 En la Sarcoidosis se emplean actualmente 3 marcadores: 

         - ECA (Enzima Conversora de Angiotensina).

         - Gammagrafía pulmonar con galio-67.

          - Lavado broncoalveolar. 

     Pese a que su evolución es muy variable, en general puede considerarse como bueno. 
     La forma AGUDA suele por norma general, retornar expontáneamente antes de un año. 
      La forma CRONICA tiene peor pronóstico, y normalmente sólo evolucionan de una forma expontánea entre un 25% y un 50% de los casos 
     La letalidad directa de esta enfermedad se sitúa entre un 1-10% de los casos, siendo la causa de mortalidad más dada, la insuficiencia respiratoria y las hemoptisis masivas o recurrentes. 

      Pese a la práctica unanimidad a la hora de prescribir el tratamiento, no existe criterio terapéutico en cuanto a que pacientes se les debe administrar, en que momento y hasta cuando. 

      El tratamiento consiste en Corticoesteroides, es decir PREDNISONA (Corticoesteroide que se obtiene por dehidrogenación microbiológica de la Cortisona). 

      En poco tiempo las manifestaciones clínicas se reducen conduciendo hacia una remisión de la enfermedad. No obstante esto es puramente sintomático, no cura el proceso y su beneficio a largo plazo no está claro. 

      El abandono del tratamiento suele por norma general venir acompañado de recaídad en un 80% de los casos aproximadamente, de ahí que el tratamiento debe mantenerse durante tiempo. 

Pautas a seguir en el tratamiento: 
En formas avanzadas de la enfermedad se recomienda iniciar el tratamiento con dosis de Prednisona entre 40 y 60 mg/día, normalmente en un única toma diaria por la mañana. Esta dosis inicial debe mantenerse entre 6 y 8 semanas para ir descendiendo lenta y paulatinamente en las cantidades (10 mg,s cada mes o 5 mg,s cada dos semanas), hasta lacanzar la dosis de mantenimiento de unos 15 mg,s/día; las reducciones posteriores han de ser todavía más lentas, rondando unos 2,5 mg,s cada mes. cuando se detecte una recidiva, deberá restaurarse la dosis previa o incluso superior. Se debe en general mantener la medicación durante períodos largos: cinco, diez o incluso más años. 

      Actualmente existen otras alternativas a la Prednisona como son los esteroides inhalados (budesonide), aunque la sustitución de estos por la anterior no está del todo claro pese a que la respuesta en casos de Sarcoidosis pulmonar es aducuada, así como que los efectos secundarios son escasos. 
      En Sarcoidosis que se manifiestan contra el tratamiento convencional, se ha empleado corticoterapia intravenosa en bolos (metilprednisona). 

      Parece ser que otra alternativa a los esteroides pueda ser la ciclosporina, capaz de evitar la aparición de granulomas, aunque su utilidad parece no superar la de los primeros. 

      En estadios finales de la enfermedad, puede plantearse la posibilidad del transplante pulmonar. 

      El autor de esta Página asegura que la información ha sido verificada, no sólo mediante estudio, sino porque en una parte de sus pulmones lleva la enfermedad que aquí se describre. No obstante el médico siempre es el que tiene la palabra, que para eso es médico. 

Gracias por verme - - 
Dr Klause Dieter


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Neurosarcoidosis (CNS)
Neurosarcoidosis is the abnormal deposit of tissue and inflammation in the nervous system. Only approximately 5% of Sarcoid patients will be effected by CNS (Central Nervous System) involvement.. 

      Neurosarcodosis can effect any part of the nervous system, and therefore is a significant manifestation of this disease, in that it can cause permanent disability and in some rare cases even death. Treatment is indicated if the symptoms are severe or progressive. The goal is to reduce the symptoms caused by the area effected  The use of an anti-inflammatory drug or immune suppresser can be of great help in controlling severe symptoms. 

        There are many ways for neurosarcoid to manifest itself  If the Cranial nerve or involvement in the Brain is the case. A common manifestation is facial palsy, or the drooping of the facial muscles.  Any nerve can be involved, to include the nerves that effect the eyes, taste, smell, or hearing. You may experience confusion, memory loss, seizures, headaches, dizziness, vertigo, or speech impairment. 

       In the case of the Pituitary Gland being effected. The patient may experience, a high urine output, changes in menstrual cycle, excessive thirst, excessive fatigue. 

       If the Peripheral Nerve is involved. The patient may have symptoms that cause the loss of movement, weakness, abnormal sensations, or loss of sensation in any body part. 

        The symptoms and treatment are HIGHLY variable. Any part of the nervous system can be involved. A single nerve, multiple nerves, or a generalized area. Signs may mimic diabetes insidious, hypopituitarism, optic neuritis, meningitis, space occupying lesions such as tumors, or other neuralgic disorders. A history of sarcoidosis followed by neuralgic symptoms is highly suggestive of neurosarcoidosis. 

        Many cases will spontaneously resolve in 4 to 6 months. Others will experience intermittent symptoms for the rest of their lives. About 5% of people with any kind of Sarcoidosis will die as a direct result of the disease. Most commonly when Brain stem or Heart involvement causes cardiac arrest. 

         If you have Sarcoidosis and experience any neurological symptoms or signs, such as sudden loss of sensation, movement, or function contact your health care provider for further evaluation. It's possible that it is not related to Neurosarcoidosis, but in either event it needs to be taken seriously. 

       One Final Note:  Please, if you are diagnosed with neurosarcoidosis, do not push the panic button. This Does NOT mean you will develop all or any of the symptoms described in this article, the effects of this involvement are wide and varied... Nor does it mean that it will be progressive.  It may very well be, as in most cases, that the symptoms will subside in a relatively short period of time, with no residual effects. 

         If your health care provider is uninformed about this disease, then you have two choices, 1) Help to inform him if he is willing, and, if he is willing to work with you. OR 2.) Find another Physician who is a specialist in the treatment of this disease. If you are having difficulty in finding someone in this field in your location, please use the link below, it will be most helpful.


        We sufferers of Sarcoidosis will continue to fight and help bring an end to this disease. Make it your resolve to Not give up, but rather to educate yourself and equip yourself to take control of your own treatment. I hope this article has informed you enough to do just that. 

For More Information On Neurosarcoidosis 
Please Visit These Web sites!




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of the Heart
     We would like to Welcome you to this Page on Sarcoidosis of the heart.  Our hope is, that this page will give you enough information, so you will be aware of some of the symptoms that you need to be alert to, especially those that have multi system involvement. 

      It is uncommon for a manifestation of heart involvement to be present without extensive multiple organ systems being involved. Generally the physical examination is normal except perhaps a mitral valve or a Tricuspid murmur.  Electrocardiogram will usually show nonspecific ST/T abnormalities and heart block, which is not a blockage in the arteries, but an interruption in electrical conduction. 

     Sarcoidosis of the Heart is found only in approximately 5%  to 10% of all Sarcoid patients.  Only 5% experience symptoms.  Sudden death occurs in 60% of the patients and for 30% of those patients, sudden death is the initial manifestation of Cardiac involvement. Needless to say this is a serious and possibly even fatal form of Sarcoidosis. 

      As in the case with many organs that are effected by sarcoid, the symptoms are dependent on the exact location of the granulomas. A common manifestation is to the Electrical Conduction of the heart ( Sinus Node).  Approximately 40% of patients, present with symptoms in any of the three levels of Heart Block.  Complete Heart Block, being the most severe, may require a pacemaker implant for a permanent solution to the problem. Other levels of heart block may require medications to control symptoms. For information on Heart Block, visit this site: 


     If there is granulomatous infiltration ( or tumor like growths ) of the Heart Muscle, the patient will present with Restrictive Cardiomyopathy, which is, and can be a very serious and even fatal manifestation of Sarcoidosis. The patient will experience, shortness of breath (on exertion) , palpitations, chest pain, fatigue. Restrictive Cardiomyopathy has no treatment available, and would require a heart transplant to resolve the problem.  It is important however to differentiate between restrictive cardiomyopathy and Restrictive Pericarditis, which can be treated surgically. For information on Restrictive Cardiomyopathy please visit this  site.. 


       There are many symptoms that can occur with Cardiac involvement that are not noted above, depending on the location of the effected area of the heart.  Some of these include, Ventricular Aneurysm, Tachyarrhythmias, and, Decreased Systolic Function.  Cortisteroids, and other Medications, Pacemaker, Transplants and Cardioverter defibrillators are some of the methods of therapy. Most case reports of ICD therapy (cardio defibrillators) have good results with a five year survival being well over 75%.. 

    If you have multiple organ system involvement, it is imperative that you consult with your health care provider if you experience, chest pain, fatigue, palpitations, or shortness of breath on exertion.  It would also be wise to have a complete cardiac examination on a regular basis, to include a physical exam as well as EKG. 

     While it is difficult to discuss one of the more serious faces of this disease, it does create awareness on the part of the public and on the part of  health care providers.  The severaties of this disease is finally driving the point home, that we NEED additional research and OUR continued efforts to make the public, physicians, and health care facilities more educated as to what we are living with on a daily basis. Lets work together to get the word out to as many as possible, so that a cure can be found for all who suffer from this and other auto immune diseases.

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Other Wonderful Websites
We are proud to join in the fight to make Sarcoidosis known to all.  Particularly to the health and research communities.  There is a great army out here, ready to support and encourage.  We are truely thankful that you have taken the time to educate yourself about this disease.  Together, we can make a difference.There are many many other sites online dealing with this disease, and we will be Adding to this list.
World Sarcoidosis SocietySarcoidosis Web 
Research Directory 
Sarcoidosis Online Sites
Mnt Sinai Sarcoidosis Support Grou
Sarcoid community News
Sarcoidosis and their Families
Joseph Mclaurin's Sarcoidosis Site
Sarcoid Research Institute
National Sarcoidosis Resource Center
MUSC Sarcoidosis Center
Loyola University. Dermatology
The Scleroderma & Autoimmune Digest
Cardiothoracic update
My Life With Sarcoidosis
Dr. Sharma  Fatique & Sarcoid
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If you know of a hospital that specializes in transplants, that we do not have listed.  Everyone will benefit from  your help. 
Questions & Answers Finical Assistance
Surgeon Referral Service Aged Recipients
Transplant Hospitals Caring Organizations
Success Rates Best Resource



Questions & Answers

 Q:  How Do I chose a good Transplant center? 
 A: http://www.transweb.org/qa/qa_txp/faq_find_center.html

Q:  Who are all the doctors on the transplant team that 
I'll see in the hospital before and after my transplant? What  are they all doing? 
A: http://www.transweb.org/qa/qa_txp/faq_txp_team.html 

Q:How does blood group matching work? 
A: http://www.transweb.org/qa/qa_txp/faq_abo_match.html 

Q:  Can I get AIDS from an organ transplant 
A: http://www.transweb.org/qa/qa_txp/faq_aids.html 

Q:   What Position Am I on the Waiting List 
A: http://www.transweb.org/qa/qa_txp/faq_pos_list.html 

Q: How to get a Medic Alert bracelet 
A: http://www.transweb.org/qa/qa_txp/faq_medicalert.html 

Q: Are  Card Carrying Organ Donors AT Risk If Emergency Care Is needed? 
A:  http://www.transweb.org/qa/qa_txp/faq_donor_care.html 

  Q: How Will Y2K Effect The Computerized Transplant Information? 
A: http://www.unos.org/frame_Default.asp?Category=y2k 

 Q: What Are The Side Effects From Anti rejection Drugs? 
A: There are multiple side effects of these drugs including: 

Acne Hypertension
Bone Weakness Hi Potassium Levels
Dreased White Blood Cells and Platelets Increased Fat Deposition of Face Back And Abdomen
Easy Bruisability Moodiness
Emotional Increased Risk Of Skin Cancer
Salt and Water Retention "Moon Face"
Sun Sensitivity Weight Gain
Hand Tremors
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Success Rate
     There are more than 19,000 organ transplants performed in the U.S. annually. Transplants have become a successful form of treatment for end-stage organ disease. Three-year patient success rates are estimated at: 
95% for kidney transplants, 
92%  for pancreas, 
91% for heart transplants, 90%  for liver transplants, 
81% for heart-lung transplants, 
76% percent for lung transplants. 
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Transplant Hospitals


Loma Linda University
Transplantation Institute, 
11223 Anderson Street, Room 1405 
Loma Linda, CA 92354 
Phone: 1 (800) LIVER90 
1 (800) 548-3790 
Fax: (909) 558-4252 

University of California at San Diego
Transplant Coordinator 
543-8208, 543-7777 
Fax 543-2917 

University of Southern California
1510 San Pablo Street, Suite 430 
Los Angeles, CA 90033-4612 
Telephone: (323) 442-5908 
Fax: (323) 442-5721 

Loma Linda University Medical Center 
 International Heart Institute
11234 Anderson Street, 
Post Office Box 2000, 
Loma Linda, CA 92354 
Telephone: (909) 558-0800 
Patient referral service: 
1-(800) 872-1212 
(909) 558-4011 
(909) 558-4201 

National Institute of Transplantation
St. Vincent Medical Center
2200 West 3rd street Suite 100 
Los Angeles  Ca. 

UC Davis Transplant Center
2525 Stockton Blvd., #2008 
Sacramento, CA 95817 
(916) 734-2657 
Toll-free 1-800-821-9912 
E-mail us at: 

California Pacific Medical Center

UCLA Medical Center Transplant Center
Telephone Numbers 
(310) 825-5296 
Information and referral 
(310) 825-6185 
Pediatric Physician Relations Liaison 
(310) 825-9524 

University of California at San Francisco
Moffitt Hospital, M 884 
 505 Parnassus Avenue 
San Francisco, CA 94143-0116 
Nancy L. Ascher, M.D., Ph.D. 
Chief, Transplant Service 

Children's Hospital Los Angeles
Affiliated with the University of 
Southern California School of Medicine 
University of Colorado School of Medicine
4200 E. 9th Ave. 
Denver, CO 80262 

Porter Transplant Service
Community-based transplant 
program located in the 
Rocky Mountain region. 
Denver, CO

University of Florida Health Sciences Center at Jacksonville 
University Medical Center 
655 W. 8 th Street 
Jacksonville, FL 32209

University of Miami Transplant Center 
University of Miami Transplant Program 
 1150 NW 14th St. Ste. 209B 
 Miami FL 33136 
 Mary Ann Lunde, 305-243-7591 

Tampa General Hospital
TGH Marketing at (813)253-4662 
Davis Islands 
P.O. Box 1289 
Tampa, Florida 33601 


Loyola University Transplant Center 
Medical Center Main Number - (708) 216-9000 
Find a New Physician - (708) 327-1000 
Information Service - (708) 226-4357
(Maywood, IL) 

The Rush Heart Institute 
1725 W. Harrison St., Suite 1159 
Chicago, Illinois 60612 
Phone: (312) 563-2230 
1-(800) 942-4144 
Fax: (312) 942-403 

University of Chicago
Call HealthLink toll-free
Or e-mail.  webmaster@uchospitals.edu 


Jewish Hospital Transplant Center 
A Network of Hospitals 
For informations E-mail  At:

University of Kentucky Transplant Center 
University of Kentucky 
Chandler Medical Center 
800 Rose Street C-416 
Lexington, KY 40536-0293 


Ochsner Multi-Organ Transplant Center 
New Orleans, La 
24-hour Hotline (800) 643-1635. 


The University of Maryland Medical System 
22 South Greene Street 
Baltimore, Maryland 21201-1559 
(410) 328-8667 

Johns Hopkins Hospital 
Transplant Resource Center of Maryland, Inc. 
1540 Caton Center Drive, Suite R 
Baltimore, Maryland 21207 


Brigham and Women's Hospital's 
Lung Transplant Program 
75 Francis Street 
Boston, MA  02115 
(617) 732-6824 


University of Michigan 
Transplant Center 
 Heart Transplant Evaluations 
Joan Meagher ...(734) 936-9562 
Laura Gorman ...(734) 936-8946 
Lung Transplant Evaluations 
Ros Florn ...(734) 936-8535
 Lung Transplant Coordinator ... 313-936-8535 
 Lung Transplant Coordinator .... 313-747-3359

Henry Ford Liver Transplant Program
(Detroit, MI)


Fairview-University Medical Center 
Transplant Services 
A Partnership Of 
University of Minnesota Physicians 
Transplant Program and Fairview Health Services 
(Minneapolis, MN)

Lung Transplant Program 
Telephone: (612) 625-9922 or 
(800) 888-8942, etx,5-9922 
Fax: (612) 626-6968 

The Transplant Center 
516 Delaware St. S.E. 
Box 398, Room 2-200 
Minneapolis, MN 55455

Heart Transplant Program 
Telephone: (612) 625-9922 or 
(800) 888-8642, ext. 5-9922 
Fax: (612) 626-6968 

The Transplant Center
516 Delaware St. S.E. 
Box 398 
Minneapolis, MN 55455 

New York: 

  Stony Brook University 
Hospital and Medical Center 
Stony Brook, NY 11794

Westchester Medical Center 
Valhalla, NY 10595 
(914) 493-7000 
 Transplant 914-493-1990 
Transplant  914-493-1990 

New York Presbyterian Hospital 
New York Weill Cornell Center 
525 East 68th Street 
New York, NY 10021 
Main Number: 

Columbia University
2960 Broadway 
New York, NY 10027-6902 

Chief-Clinical and Experimental Research 
525 East 68th Street, M-507 
New York, NY 10021 

Number For Each Building:
Main Campus 
622 West 168th Street 
New York, NY 10032 

16 East 60th Street 
New York, NY 10021 

CP Westside 
21 West 86th Street 
New York, NY 10024 

5678 Riverdale Avenue 
Bronx, NY 10471 

Allen Pavilion 
5141 Broadway 
New York, NY 10034 

New Jersey: 
Our Lady of Lourdes Medical Center 
 900 Haddon Avenue - Suite 100 
Collingswood, New Jersey 08108 
Phone: 609-869-3125 
Fax: 609-869-3129

UMDNJ-University Hospital 
(Newark, NJ) 
For information e-mail

Newark Beth Israel Medical Center 
(Newark, NJ)

Saint Barnabas Medical Center 
(Livingston, NJ) 

Robert Wood Johnson University Hospital 
One Robert Wood Johnson Place 
PO Box 2601 
New Brunswick, NJ 08903 
Hospital Voice number: 732-828-3000 


 Ohio State University Medical Center 
Help Desks for the complex 

Doan Hall 
(614) 293-3585 

Dodd Hall 
(614) 293-3800 

James Cancer Hospital 
(614) 293-3300 

Rhodes Hall
(614) 293-8300

University Hospitals Clinic 
(614) 293-8005 


University of Pittsburgh Medical Center 
(Pittsburgh, PA)

Albert Einstein Medical Center 
(Philadelphia, PA) 

Children's Hospital of Philadelphia
(Philadelphia, PA) 


University of Tennessee Memphis
Division of Transplant
(Memphis, TN)

Baylor Institute of Transplantation Sciences
 Kenneth A. Ausloos, M.D
Lung Transplant Medical Director 
3500 Gasten 4Roberts 
Dallas Texas 754246 

University of Texas 
Division of Immunology
and Transplantation

The Methodist Hospital
Baylor College of Medicine 
Multi-Organ Transplant Center 
Smith Tower #447 
Houston, Texas 77030-2707 
Phone: (713) 790-2501
Fax: (713) 793-1335 

Washington, DC: 

Georgetown University Medical Center 
4 PHC, 3800 Reservoir Road, NW 
Washington, DC 20007 
Phone: (202) 784-3700 

Howard University Hospital Transplant Center 
2041 Georgia Ave., N.W., Suite 42000 
Washington, D.C. 20060 
Tel:(202) 865-1443 
Fax:(202) 865-6442 

Washington State:

Sacred Heart Medical Center 
PO Box 2555 
Spokane, WA 99220

University of Washington School of Medicine
Division Administrator 
Don Gallagher 
Phone: 206-548-4902 
Email: dontx@u.washington.edu

Children's Hospital & Medical Center 
4800 Sand Point Way NE 
Box 359300 
Seattle, WA 98105-9300 
Phone: 206-526-2000

Providence Medical Center 
500 17th Avenue 
Box 358020 
Seattle, WA 98124-8020 
Phone: 206-320-2000 

Harborview Medical Center 
325 Ninth Avenue 
Box 359796 
Seattle, WA 98104-9796 
Phone: 206-731-3000 

Veterans Affairs Puget Sound Health Care System 
1660 South Columbian Way 
Box 358280 
Seattle, WA 98108-8280 
Phone: 206-762-1010

University of Washington Medical Center 
1959 NE Pacific Street 
Box 356410 
Seattle, WA 98195-6410 
Phone: 206-548-3300 

Wenatchee Valley Clinic
820 North Chelan 
4th Floor 
Wenatchee, WA 98801 
Phone: 509-663-8711 


University of Wisconsin Medical School 
H5/3 Clinical Science Center 
600 Highland Avenue 
Madison, WI 53792-3236 
Phone: (608) 263-1400 
Fax: (608) 263-0454 

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Other Caring Organization

American Council on Transplantation 
The address is: 
P.O. Box 1709, 
Alexandria, VA 22313

Division of Organ transplantation
 Health Resources and Services Administration 
Room 11A-22, 
5600 Fishers Lane, 
Rockville, MD 20857. 
Information is available 
24 hours a day, 7 days a week

American Society for Minority 
Health Transplant Professionals 
For additional information or 
to request a membership application, 
call (314) 991-1661 or write to: 
ASMHTP Membership 
  P.O. Box 8324 
St. Louis, Missouri  63132-0324 

American Society of Transplant Physicians
6900 Grove Road · Thorofare, NJ 08086-9447 USA 
Phone: 609-848-6205 · Fax: 609-848-4016 
E-mail: ast@slackinc.com 

American Society of Transplant Surgeons 
P.O. Box 510 
Thorofare, NJ 08086-0510 
Phone: 609-384-8256 
 Fax: 609-251-0278 

North American Transplant 
Coordinators Organization 
NATCO, P.O. Box 15384, Lenexa, KS,
66285-5384, USA. 

National Organization for 
Transplant Enlightenment 
P.O. Box 261466 
Tampa, FL 33685 
Open to all 

Tampa Bay Hepatitis and Liver 
Disease Support Group 
Columbia Edward White Hospital 
220 90th Ave. NE 
Auditorium Ste. 1G 
St. Petersburg, Fl 33702 
813-896-2400 ext. 225 

Tampa Bay Liver Transplant Support Group 
Columbia Edward White 
220 90th Ave. NE 
Auditorium Ste. 1G 
St. Petersburg, Fl 33702 

ALF Gulf Coast 
Columbia Blake Medical Center
3 East Classroom 
2020 59th Street West 
Bradenton, FL 

ALF Gulf Coast 
St. Anthony's Hospital 
1200 7th Ave. N. 
St. Petersburg, FL 

Second Wind Lung Transplant Association 
Tampa Bay Support Group
Tampa General Hospital 
Contact Paul Brooks 

Resourse Center
Requests for information 
may be directed to: 
Librarian UNOS/NTRC 
1100 Boulders Parkway Suite 500 
Richmond, VA 23225 
Telephone: (804) 330-8546 
Fax: (804) 330-8593 
UNOS News Bureau 
(804) 327-1432

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Surgeons Referral Service

 Worldwide surgeon referral service.

Cardiac Surgeons, and Doctors by State.. 
for children and adults 

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Financial Assistance

 National Foundation for Transplants 
(formerly Organ Transplant Fund).
If you or someone close to you is in need of f
Financial assistance to help pay for transplant related 
care or medications, call us toll-free at  1-800-489-3863. 

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Aged Recipients

Stanford University and 
the University of Maryland

As the candidate list for  transplantation expands, The use of older donors is being re-evaluated.  They are using a novel approach whereby Transplant from an older donor are transplanted as a "dual transplant" into an aged recipient. 
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Best Resource We Found
     This is by far the most complete and informative site on Transplants, that we could find, so PLEASE make sure  you take the time to visit 
       The Web's largest information resource about Organ Transplantation and Donation for Adults, Children and Medical Professionals, over 12,000 transplant related pages and links, Transplant News is updated daily, site hosts World Children's Transplant Fund, Nicholas Green Foundation, The Fourth International Society for Organ Sharing Congress, 1997  Transplant Congresses, World's Largest Website.. 
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and Treatments
We take pride in providing accurate, and  current information. The information below is taken from the 1998 Consumer Reports, Complete Drug Reference., USP. 
Corticosteroids  Non Steroid 
Immune Suppressive Treatment
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Description Use In Children
Side Effect Use During Pregnancy
Taking Other Medications? Other Medical Problems?
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     This medication is used to provide relief inflamed areas of the body.  It lessens swelling, redness, itching, and allergic reactions.  It is often used as part of the treatment for a number of different diseases, such as, Sarcoidosis, severe allergies or skin problems, asthma, or arthritis.  It may also be used for other conditions as determined by your doctor.

      Your body naturally produces certain cortisone like hormones that are necessary to maintain good health.  If your body does not produce enough, your doctor may have prescribed this medicine to help make up the difference. 

      This medication is a very strong medicine.  In addition to their helpful effects in treating your medical problem, they have side effects that can be very serious.  If your adrenal glands are not producing enough cortisone like hormones, taking this medicine is not likely to cause problems unless you take too much of it.  If you are taking this medicine to treat another medical problem, be sure that you discuss the risks and benefits of this medicine with your doctor.

These medicines are available only with your doctor's prescription. 
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Use In Children
Corticosteroids may cause infections such as Chickenpox or Measles to be more serious in children who catch them.  These medicines can also slow or stop growth in children and in growing teenagers, especially when they are used for a long time.  Before this medicine is given to children or teenagers, you should discuss its use with your child's doctor and then carefully follow the doctor's instructions.
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Side Effects:
     May lower your resistance to infections.  Also, any infection you get may be harder to treat.  Always check with your doctor as soon as possible if you notice any signs of a possible infection, such as sore throat, fever, sneezing, or coughing.

     Along with its needed effects, a medicine may cause some unwanted effects.  Although not all of these side effects may occur, if they do occur they may need medical attention.  When this medicine is used for short periods of time, side effects usually are rare. 

     The following  side effects may go away during treatment as your body adjusts to the medicine.  However, check with your doctor if any of those side effects continue or are bothersome? 

      More Common: Increased appetite; indigestion; nervousness or restlessness; trouble in sleeping.

     Less common or rare: Darkening or lightening of skin color; dizziness; flushing of face or cheeks (after injection into the nose); headache; increased joint pain (after injection into joint);increased sweating; lightheadedness; nose bleeds (after injection into the nose) unusual increase in hair growth on body or face. 

      When this medicine is used for short periods of time, side effects usually are rare.  However, check with your doctor as soon as possible if any of the following side effects occur. 

       Less common:  Decreased or blurred vision; frequent 
urination; increased thirst; rectal bleeding; blistering; burning; itching; or pain not present before used of this medicine (when used rectally) 
      When this medicine is used for short periods of time, side effects usually are rare.  However, check with your doctor as soon as possible if any of those side effects occur

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Taking Other Medications?:
     Although certain medicines should not be used together at all, in other cases, two different medicines may be used together even if an interaction might occur.  In these cases, your doctor may want to change the dose, or other precautions may be necessary.  When you are taking any corticosteroids, it is especially important that your health care professional knows if you are taking any of the following: 
  •  Aminoglutethimide
  • Antiacids (in large amounts) 
  • Barbiturates, except butabital
  • Carbamazepine (e.g.,Tegretol)
  • Griseofulvin (eg., Fulcicin)
  • Mitotane (e.g., Lyusodren)
  • Phenybutazone (e.g, Lysodren)
  • Phenytoin (e.g., Dilantin) 
  • Primidone (e.g, Mysoline) 
  • Rifampin (e.g., Rifadin )The use of these medicines may make certain corticosteroids less effective.
  • Amphotericin B by injection (e.g, fungizone) 
  • This medicine decrease the amount of potassium in the blood .  Serious side effect could occur if the level of potassium gets to low. Antidiabetics,oral (diabetes medicine taken by mouth)
  • Insulin This medicine may increase blood glucose (sugar) levels. 
  • Digitalis glycosides (heart medicine) This medicine decreases the amount of potassium in the blood.  Digitalis can cause an irregular heartbeat or other problems more commonly if the blood potassium get to low.
  • Skin test injections- This medicine may cause false results in skin tests. 
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Suffer From Other 
Medical Problems?: 
     The presence of other medical problems may affect the use of this medicine.  Make sure you tell your doctor if you have any other medical problems, especially the following: 
  • Bone disease These medicines may worsen bone disease because they cause the body to lose more calcium. 
  • Chickenpox 
  • Measles 
  • Colitis 
  • Diverticulitis 
  • Stomach ulcer or other stomach or intestine problems- these medicines may cover up symptoms of a worsening stomach 0r intestinal condition.  A patient would not know if his/her condition was getting worse and would not get medical help when needed. 
  • Diabetes mellitus- This medicine may cause a loss of control of diabetes by increasing blood glucose. 
  • Fungus infection or any other infection 
  • Herpes simplex  infection of the eye
  • Infection at the place of treatment 
  • Recent surgery or serious injury 
  • Tuberculosis (active TB, non active TB or past history of)- These medicines can cause slower healing, worsen existing infections, or cause new infections. 
  • Glaucoma-This medicine may cause the pressure within the eye to increase. 
  • Heart disease 
  • High blood pressure
  • Kidney stones- This medicine causes the body to retain more salt and water.  These conditions may be made worse by this extra body water. 
  • High cholesterol levels- this may increase blood cholesterol levels 
  • Liver disease 
  • Overactive thyroid 
  • Under active thyroid- With these conditions, the body may not eliminate the steroid at the usual rate, with may change the medicine's effect.
  • Myasthenia gravis - When these medicines are first stared, muscle weakness may occur.  Your doctor may want to take special precautions because this could cause problems with breathing. 
  • Systemic lupus erythematosus - This condition may cause certain side effects of steroids to occur more easily. 
  • See Book "Coping with Prednisone. It may work miracles, but how do you handle the side effects?" by Eugenia Zukerman and Julie R. Ingelfinger, M. D. St. Martin's Press, 1997. This book has many suggestions for dealing with the side effects of prednisone and for dietary solutions and alternatives.
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 Description Use In Children
Side Effect Use During Pregnancy
Taking Other Medications? Other Medical Problems?

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Nonsteroidal anti-inflammatory drugs (also called NSAD's) are used to relieve some symptoms caused by arthritis (rheumatism), such as inflammation, swelling, stiffness, and joint pain.  However, this medicine does not cure arthritis and will help you only as long as you continue to take it. 

    Some of these medicines are also used to relieve other kinds of pain or to treat other painful conditions, such as:

  • gout attacks 
  • bursitis 
  • Tendinitis 
  • Sprains, strains, or other injuries 
  • Inflammation from Sarcoidosis 
  •      Any nonsteroidal anti-inflammatory drug can cause side effects, especially when it is used for a long time or in the large doses.  Some of the side effects are painful or uncomfortable.  Others can be more serious, resulting in the need for medical care and sometimes even death.  If you will be taking this medicine for more than one or two months or in large amount, you should discuss with your doctor the good that it can do as well as the risks of taking it.  Also it is a good idea to ask your doctor about other forms of treatment that might help to reduce the amount of this medicine that you take and/or the length of the treatment. 

         One of the nonsterodial anti-inflammatory drugs, phenylbutazone, is especially likely to cause very serious side effects.  These serious side effects are more likely to occur in patients 40 years of age or older than in younger adults, and the risk become greater and the patient's age increases.  Before you take phenylbyutazone, be sure that you have discussed its use with your doctor. 

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    Use In Children:

  • For ibuprofen: ibuprofen has been tested in children 6 months of age and older.  It has not been shown to cause different side effects or problems than it does inadults. 
    • For indomethacin and for tolmetin:  Indomethacin and tolmetin have been tested in children 2 years of age and older and have not been shown to cause different side effects or problems than they do in adults. 
    • For naproxen:  Studies with naproxen in children 2 years of age and older have shown that skin rash may be ore likely to occur. 
    • For phenylbutazone:  Use of phenylbutazone in children up to 15 years of age is not recommended. 
    • Oxaprozin:  Oxaprozin has been used in children with arthritis.  However, there is no specific information comparing use of this medicine in children with use in other age groups.

    •      Most of these medicines, especially indomethacin and phenylbutazone, can cause serious side effects in any patient.  Therefore, it is especially important that you discuss with the child's doctor the good that this medicine may do as well as the risks of using it. 
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    Use During Pregnancy: 
         Studies on birth defects with theses medicines have not been done in humans.  However, there is a chance that these medicines may cause unwanted effects on the heart or blood flow of the fetus or newborn baby if they are taken regularly during the last few months of pregnancy.  Also, studies in animals have shown that these medicines, if taken late in pregnancy, may increase the length of pregnancy, prolong labor, or cause other problems during delivery.  If you are pregnant, do not take any of these medicines, including nonprescription (over-the-counter [OTC]) ibuprofen or naproxen, without first discussing  its use with your doctor. 
           Studies in animals have not shown that : 
    • Fenoprofe, floctafenine, flubiprofen, ibuprofen, ketoprofen, nambometone, naproxen, phenylbotazone, piroxicam, tiaprofenic acid, or tolmetin causes birth defects. 
    • Diflunisal caused birth defects of the spine and ribs in rabbits, but not in mice or rats. 
    • Diclopenac and meclofenamate caused unwanted effects on the formation of bones in animals. 
    • Etodolac and oxaprozin caused birth defects in animals. 
    • Indomethacin caused slower development of bones and damage to nerves in animals.  In some animal studies. 
    • Sulindac caused unwanted effects on the development of bones and organs.  Studies on birth defects and mefenamic acid have not been done in animals.
             Even though most of these medicines did not cause birth defects in animals, many of them did cause other harmful or toxic effects on the fetus, ususlly when they were given in such large amounts that the pregnant animals become sick. 

    Side Effects: 

           These side effects may go away during treatment as your body adjusts to the medicine.  However, check with your doctor if any of the following side effects continue or are bothersome.

    More Common: 
             Abdominal or stomach cramps, pain, or discomfort (mild to moderate); diarrhea (if taking mefenamic acid, stop taking it and check with your doctor immediately); dizziness, drowsiness, or lightheadedness; headache (mild to moderate); heartburn, indigestion, nausea, or vomiting. 

    Less Common or rare:
           Bitter taste or other taste change; bloated feeling, gas, or constipation; decreased appetite or loss of appetite; fast or pounding heartbeat; flushing or hot flashes; general feeling of discomfort or illness; increased sensitivity of eyes to light; increased sensitivity of skin to sunlight; increased sweating; irritation, dryness, or soreness of mouth; nervousness, anxiety, irritability, trembling, or twitching; rectal irritation (with suppositories); trouble in sleeping; unexplained weight loss; unusual tiredness or weakness without any other symptoms. 

    Stop taking this medicine and check with your doctor immediately if any of the following side effect occur:. 

           RARE: For all nonsteroidal anti-inflammatory drugs: 
    Fainting; fast or irregular breathing; fast , irregular heartbeat or pulse; hive-like swellings (large) on face, eyelids, mouth, lips, or tongue; puffiness or swelling of the eyelids or around the eyes; shortness of breath, troubled breathing wheezing, or tightness in chest. 

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    Taking Other Medications? 
        Although certain medicines should not be used together at all, in other cases two different medicines may be used together even if an interaction might occur.  In these cases, your doctor may want to change the dose, or other precautions may be necessary.  When you are taking a nonsteroidal anit-inflammatory drug, it is especially important that your health care professional know if you are taking any of the following: 
    •  Anticoagulants ( Blood thinners) 
    • Cefandole ( e.g., Mandol) 
    • Cefoperazone ( e.g., Cefobid) 
    • Cefotetan (e.g., Cefotan) 
    • Heparin 
    • Picamycin (e.g., Mithracin) 
    • Valproic acid ( The chance of bleeding may be increased ) 
    • Aspirin - the chance of bleeding may be increased if aspirin is used together with a nonsteroidal anti-inflammatory drug on a regular basis. 
    • Ciprofloxacin (e.g, Cipro) 
    • Enoxacin ( e.g., Penetrex) 
    • Itraconazole ( e.g., Sporanox) 
    • Ketoconazole (e.g., Nizoral) 
    • Lomefloxacin (e.g; maxaquin) 
    • Norfloxacin (e.g.. Noroxin) 
    • Ofloxacin (e.g., Floxin 
    • Tetacyclines, oral- The buffered form of phenylbutazon (e.g., Alka Butazolidin) may keep these medicines from working properly if the 2 medicines are taken too close together 
    • Cyclosporin (e.g., Sandimmune) 
    • Digitalis glycosides (Heart medicine) 
    • Lithium (e.g., Lithane) 
    • Methotrexate (e.g., Mexate) 
    • Phenytoin (e.g., Dilanitin)- Higher blood levels of these medicines and an increased chance of side effects may occur. 
    • Triamterenne (e.g., Dyrenium) - The chance of kidney problems may be increased, especially with indomethacin. 
    • Zidovudine (e.g., AZT, Retrovir) - The chance of serious side effects may be increased, especially with indomethacin. 
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    Other Medical Problems? 
         The presence of other medical problems may affect the use of nonsteroidal anti-inflammatory drugs.  Make sure you tell your doctor if you have any other medical problems, especially: 
  • Alcohol abuse
  • Bleeding problems 
  • Colitis, Crohn's disease, diverticulitis, stomach ulcer, or other stomach or intestinal problems
  • Diabetes mellitus (sugar diabetes) 
  • Hemorrhoids 
  • Hepatitis or other liver disease 
  • Kidney disease (or history of ) 
  • Rectal irritation or bleeding, recent 
  • Systemic lupus erythematosus (SLE) 
  • Tobacco use (or recent historyof ) - The chance of side effects maybe increased. 
  • Anemia 
  • Asthma 
  • Epilepsy 
  • Fluid retention (swelling of feet or lower legs) 
  • Heart disease 
  • High blood pressure 
  • Kidney stones (or history)
  • Low platelet count 
  • \Low white blood cell count 
  • Mental illness 
  • Parkinson's disease 
  • Polymyalgia rheumatica 
  • Porphyria 
  • Temporal arteritis - Some nonsterodial anti - inflammatory drugs may make these conditions worse. 
  • Ulcers, sores, or white spots in mouth - ulcers, sores, or white spots in the mouth sometimes mean that the medicine is causing serious side effects; if these sores or spots are already present before you start taking the medicine, it will be harder for you and your doctor to recognize that these side effects might be occurring. 
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    Immune Suppressives:

    Description Use In Children
    Side Effect Use During Pregnancy
    Taking Other Medications? Other Medical Problems?
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          These medications are used to reduce the body's natural immunity in patients who receive organs transplants.  It is also used it treat rheumatoid arthritis.  They may also be used for other conditions are determined by your doctor. 

         These meds are very strong  You and your doctor should talk about the need for this medicine and it's risks.. Even though they may cause side effects that could be very serious, remember that it may be required to treat your medical problem. 

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    Use In Children: 
     This medicine has been tested in children and, in effective doses, has not been shown to cause different side effects or problems than it does in adults.
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    Use During Pregnancy: 

     Use of these medicines is not recommended during pregnancy.  It may cause birth defects if either the male or female is using it at the time of conceptions.  The use of birth control methods is recommended.  If you have any questions about this, check with your doctor.

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    Side Effects

          Along with its needed effects, a medicine may cause some unwanted effects.  Some side effects will have signs or symptoms that you can see or feel.  Your doctor will watch for others by doing certain tests.. 

         Also, because of the way these medicines act on the body, there is a chance that they might cause other unwanted effects that may not occur until months or years after the medicine is used.  These delayed effects may include certain types of cancer such as leukemia, lymphoma, or skin cancer.  However, the risk of cancer seems to be lower in people taking them for arthritis.  Discuss these possible effects with your doctor. 

          Check with your doctor immediately if any of the following side effects occur: 

    More Common: Unusual tiredness or weakness

    Less Common: Cough or hoarseness: fever or chills; lower back or side pain; painful or difficult urination. 

    Rare: Black, tarry stools; blood in urine or stools; fast heartbeat; fever (sudden); muscle or joint pain; nausea, vomiting, and diarrhea (sever); pinpoint red spots on skin; redness or blisters on skin; stomach pain (sever) with nausea and vomiting, unusual bleeding or bruising, unusual feeling of discomfort or ills (sudden) Check with your doctor as soon as possible if any of the following side effects occur: 

    Less Common: Liver problems.  For patients taking this medicine for rheumatoid arthritis: signs and symptoms of blood problems (black tarry stools; blood in urine or stools; cough or hoarseness fever or chills; lower back or side pain; painful or difficult urination; pinpoint red spots on skin; unusual tiredness or weakness; or unusual bleeding or bruising) are less likely to occur in patients taking these medications for rheumatoid arthritis than for transplant rejection.  This is because lower doses are often used.

    Rare: Shortness of breath; sores in mouth and on lips; stomach pain; swelling of feet or lower. 

         Other side effects may occur that usually do not need medical attention.  These side effects may go away during treatment as your body adjusts to the medicine.  However, check with your doctor if any of the following side effects continue or are bothersome.

    More Common: Loss of appetite:; nausea or vomiting.

    Less Common: Skin Rash 

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    Taking Other Medications? 
    Although certain medicines should not be used together at all, in other cases two different medicines may be used together even if an interaction might occur.  In these cases, your doctor may want to change the dose, or other precautions may be necessary.  When you taking any of the following: 
  • Allopurinol(e.g,; Zyloprim) - May interfere with removal of these meds from the body; effects of these meds ( including toxicity) may be increased. 
  • Chlorambucil (e.g.; Luekeran) 
  • Corticosteroids (Cortisone - like medicine) 
  • Cyclophosphamide (e.g.; cytoxan) 
  • Cyclosporine (e.g.; Sandimmue) 
  • Mecaptopurine (e.g.; Purinethol) 
  • Muromonab - CD3 (monoclonal antibody) e.g.; Orthoclone OKT3- There may be an increased risk of infection and cancer because these meds reduce the body's  ability to fight them.
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    Other Medical Problems:
     The presence of other medical problems may affect the use of these Medicines.  Make sure you tell your doctor if you have any other medical problems, especially: 
    • Chickenpox (including recent exposure) 
    • Herpes zoster (shingles) - risk of severe disease affecting other parts of the body. 
    • Gout - Allopurinol (used to treat gout) may increase wanted and unwanted effects of these medicines. 
    • Infection - These medicines decreases your body's ability to fight infection 
    • Kidney disease 
    • Liver disease - Effects of these Medsicines may be increased because of slower removal from the body
    • Pancreatitis (inflammation of the pancreas) - They may cause pancreatitis 
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    How is Sarcoidosis Treated?
         Treatment depends on which symptoms are present and how severe they are. People with the acute form of sarcoidosis may need treatment to relieve discomfort from such symptoms as skin nodules, joint inflammation and muscle pain. The treatment for joint inflammation includes medication to reduce inflammation and physical therapy to maintain function. Medications used to treat inflammation include salicylates and nonsteroidal anti-inflammatory drugs (NSAIDs). NSAIDs not only treat joint inflammation, but also help relieve pain. 

          For people who have more troublesome symptoms or whose disease has spread to internal organs, corticosteroids also may be needed. These drugs reduce pain and inflammation and help keep granulomas from forming. Doctors may prescribe corticosteroids for patients who do not respond to aspirin or other NSAIDs. 

          Still other medications have shown promise in the treatment of sarcoid arthritis. Oral colchicine (COAL-chi-sin) is another type of medication prescribed for acute sarcoid arthritis. Studies indicate that methotrexate given by mouth in low doses once a week may be useful for lung problems. Chronic arthritis and skin involvement may benefit from treatment with chloroquine or hydroxychloroquine. 

          Researchers also are investigating the reported benefits of methotrexate, azathioprine and cyclosporine in altering the lesions that threaten critical areas of the body, such as the central nervous system or other internal organs.


    This site is a collection of treatments and discussions between  doctors

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    My Brother
    Chris Bohn
    In Memory of
    My Father
    Warren Ratcliff

    Ask McDougal is Dedicated
    To My Father

    Warren Ratcliff




    We are all winners!!
    Handling low self esteem due to the effects of sarcoid
    Is there hope on the horizon
    What is your most diffcult task, and 
    how do you handle it?
    How do I handle fatique?
    How I handle the possiblity that this disease may take my life?
    How I handle the fears and the unknowns of this disease
    How I deal with the ups and downs, and do I ever get down
    How I handle pain
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    Handling low self esteem 
    Hi Friends,
          This is a busy time of year for most of us, and there are days when we could all use a few extra hours.  This is also the time of year when many of us are attending family functions and parties. Because of this, a woman fighting sarcoid asked me the following question.  "I love the holidays, and all the events surrounding it, but I am fighting a bad case of self esteem due to the side effects of sarcoid.  Do you have this, and how can one overcome these feelings?"
          Great question, and the simple answer to this, is you bet I do.  Weather you have sarcoid or not I think all people, if they are honest, have days when their self esteem is less than what they would like it to be.
           With sarcoid, like many illnesses, there can be problems that are visible to others, be it arthritic joints, skin lesions, difficulty getting around, or any number of problems.  The thing I have found when I am having a "bad Dee day," is to remember everyone has them regardless, and to remember we are our own worst critic, and we always see things in ourselves no one else sees.  Something that helps me when I am having one of these days is I work real hard on not dwelling on this imperfections that are looming over me like a big black cloud, and I tell myself over and over that I need to focus on the things that make me who I am, and not whatever it is that might be bothering me that day.  I might add here, when you are having a really bad hair day, who doesn't, it is pretty hard to not focus on that, but this is what helps me. As a child I was taught that more often than not things are never quite as bad as I would like to believe they are, and if I dwell on them it will only make the problem worse.
           Something I have said before in my articles, but I think is worth repeating, is that no matter what happens to us in our lives, we must all remember we are the same people we were before we got sick. Okay so granted there are changes, and our lives get turned upside down at times, but who we are deep inside, this is what really counts.  As long as we don't lose sight of this, we can face and deal with almost whatever it that life hands us.
           Poor self esteem hits us all from time to time, but it will pass.  If only we smile, we can outshine those around us.  Until next time, remember you are all in my prayers and heart. God bless you.

    Love and Hugs,
    McDougal Bear

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    How to handle fatique

    Hi  from Sun City, Arizona. 

            Dolores O'Leary sent me an e-mail yesterday asking me to "try my mind with a bit of exercise," as she called it.  She wanted me to write an article on fatigue.  She was correct in that I did have to try my mind, because fatigue is just there, not something we try to break down and really think about. 
           The best way for me to define fatigue would be for you all to think about all the work that is involved in preparing for a big dinner or event.  For example Thanksgiving or Christmas.  For days you work on all the preparations, and by the time the event arrives, you are so tired all you can think about is a nice long nap with lots of pillows and your favorite comforter.  There is just one problem to doing this, with people arriving and last minute details there is no way you make this picture become a reality.  All you can do is put on a happy face and forge ahead.
          Fatigue for many of us is not just when we have overworked or prepared for a special event, but it is something we live with day in and day out, hence the words forge ahead really fits.  For many of us this is how we live our lives. 
           It is very emotional for us to feel like this because of the pressure we put on ourselves to be the person we once were, and many people expect us to continue to be.  It is like being a candle that flickers when a breeze hits it. It doesn't quite go out, almost but not quite.  This is fatigue.  We flicker but we don't quite burn out, hence the pressure of being different from we once were causes extreme stress and anxiety, and it can be very difficult at times. 
           To explain how I cope, is like most of you cope. We push our bodies to their limits and then we pay physically.  For me, I know this will happen, yet I am as guilty as many of you, again and again I push perhaps trying to prove to myself that I don't have this problem, or whatever it is you like to call it, and I try to overcome it.  To give in to it for me would be like giving into sarcoidosis, and I refuse to give in to either one of them, or let them beat me. 
           Dolores asked how my family copes with this.  Everyone gets tired so we don't make a big thing of it.  It is simply something that happens and we go on with our lives.  I have never allowed my life to revolve around this disease. I am Dee, not a disease with a strange name as I have said so many times, so sarcoid and all the side 
    effects is not something we dwell on. 
           Because I also suffer from fibromyalgia, arthritis, and costochondritis along with the sarcoid, fatigue is my constant companion.  One thing I do that seems to help me is that I try to pace myself and realize everything does not have to be done yesterday.  Being an A+ type personality this is something I have had to work on and continue to work on.  By taking what I refer to as a rest time helps me. 
          Pain also causes a lot of fatigue so something as simple as sitting here at the computer is something I have to monitor each and every day.  When I become overwhelmed with the pain and fatigue, I stop and drink a cup of mint tea, listen to some music, read a book, or play with my cats. 
          All of the above are great stress relievers for me and help the fatigue as well.  Keep in mind all of the above are very relaxing and they can put you to sleep, but if they do this is okay.  Sleep is healing, and there are times when this is the only thing one can do when dealing with this malady called, "fatigue." 
          I hope this has helped in some small way define how I define fatigue. Until next time, may God bless you all.

    Love, your friend, 
    Mcdougal Bear

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    How I handle the fears and 
    the unknowns of this disease
    Hi everyone,
          Once again it is time to chat with you. I have been asked by a lot of you the following questions, and how I deal with them.  I will answer them to the best of my ability.
     I've been asked, how do you handle the fear of sarcoidosis, and the fact you live with so many unknowns in regards to the disease?
              Each day that passes we all face fear in some dimension, be it fear something will happen to family or friends, the fear of not doing what is expected of us at work or home,  the fear of saying the wrong thing to someone and  hurting their feelings, and  last but not least, the fear illness will strike, and our lives will be turned upside down.
                These are but a few of the fears we face, and it is something no one can escape.  For many of us,  one of these fears became a reality, and this reality hit us like a roaring lion.
    The name of this fear is a disease, many have not heard of, a disease called, sarcoidosis. Because doctors do  not know what causes this disease, we are constantly being plagued with unanswerable questions. 
    The medication we are given to help ease the problems we face, often are not tolerated, and even if it is, we pay in regards to the side effects.  This it itself constitutes fear, not to mention more questions as to why we aren't getting better.
                It can be difficult facing the unknowns of sarcoid, and dealing with it on a daily basis, but with each day that passes, I know thanks to research, there is more knowledge on this insidious disease, and this gives us all hope. 
    This disease with the strange name has been my companion for over twenty-two years.  It is not a companion I chose, and it has been one I fight each and every day.  My goal is to one day rid myself of this unwelcome factor in my life, and you bet I am going to fight until this becomes a reality.
          Having said this, I believe answers are close at hand.  Living with this unwelcomef guest is difficult at best, and for many of us with chronic sarcoid, our dreams, and what we were once able to do has become something of the past.  One thing before I continue, is that this does not mean our life must end, and we can't focus on dreams that are with-in your reach, because we can, and this is what I have done for the past twenty-two years.  Had I not this disease would have controlled every aspect of my life.
               I live with sarcoid and the fear it imparts one day at a time.  I try not to dwell on the negatives, and thanks to the internet, and of course the old fashioned way, I write letters, and I try to give hope to friends, and others who are also fighting this disease.  By doing this it is also gives me hope. 
    As we all know, we gain strength in numbers. I believe each day is a gift from God, and living with sarcoid, I have come to realize what a special gift it is.  I'm thankful for the good days, and when it is "bumpy" I try and not dwell on it. This only makes the journey worse. Do I always succeed?  Of course not. There are times I become really discouraged, and frightened, but like a bad storm, if I tough it out, and not succumb to the fear I am feeling, I can fight my way through this difficult period and be stronger.  Just like winning in a game or in sports, there is a good feeling knowing you have tried your best.  Even if you don't win, the fact you have worked hard and been part of the team gives you immense self satisfaction.
    Something else to remember,  the sun always shines bright after a storm. If you think about it, the two things we all have that no one can take from us is a fighting spirit, and hope. Regardless of what we face in  life and the circumstances we are facing, this hope and the belief it is going to get better will get us through the rough times.  This is how I have learned to live with sarcoid.
    I chose from the onset of this disease, in as much as I could, to control it and not let it control me.  Having family, friends, and the support of others battling this disease has also helped me.  You bet sarcoid is difficult to deal with, as are all illnesses and problems we face in life are, but together as a team, we can and we will defeat this monster called sarcoidosis.
            I hope this has helped you.  I look forward to hearing from you soon with your questions. Until next time, you all have my prayers, my  friendship, and my love.  God bless you.
    Love,Your friend
    Mcdougal Bear
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    Is there hope on the horizon

    Hi there.. 
          I don't know about all of you, but it is hard for me to believe fall is upon us.  Living in Arizona, we continue to be the one-hundred's, so for us it is still very hot.  The one thing I continue to miss about Wyoming is the beautiful fall colors and the crisp air that fall brings.  Each season has its own beauty, but for me, the fall has special magic.
         As I write you, my heart is filled with optimism.. Along with all of you, having read about the latest research on rebooting the immune system has given me hope.. I am thankful for the researchers, their dedication, and the hard work they have put in to finally allowing those of us fighting an autoimmune disease to have the hope we have so long awaited.. 
          When I read the article sent on the Internet, I was so excited you could hear me for a city block.  Just think about it, now we really have something to hold too, and one day all of these diseases that have been so devastating will be something of the past.. Truly we all have much to be thankful for.
          Like all of you, it is a busy time.  Now that my Anthology is out, it seems the busier I go, the behinder I get, and there are never enough hours in the day.. It seems the older I become the busier I am.. I thought it was supposed to be the other way around.. Oh well, who am I to question.
          Although my mother is on a special diet, there are times we need to treat ourselves to something we really like.. With the positive news we have just received on research, I think this gives us all reason to celebrate, and so I wanted to close my column with a recipe of mother's that is sure to be a winner in your home..

    Crunchy Pie
     3 egg whites.... beaten stiff
     1 teaspoon baking powder
     1 cup sugar
     12 graham crackers.... rolled fine
     1 cup chopped walnuts
     1 teaspoon vanilla
          Mix all of the ingredients well, and put into a greased pie pan.  Bake at 350 degrees for 30 minutes.  Let cool and cover with whipped cream sweetened with powdered sugar.. Enjoy....
          I hope you will try my recipe and enjoy it.. Until next time, you are in my prayers and heart..

    Mcdougal Bear

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    Handling the possibility that this
    disease may take my life

    Hi Everyone, 
         Sure is nice to be back with you to chat.  It's always nice to be with friends and talk about our fears, concerns and sometimes just get a hug.  I always look forward to writing to all of you. 
         Boy did I get hit with a tough question to answer this week, the question is : "How do you deal with the possibility that the disease you have may take your life?"  Although it is tough to answer it is important to talk about, so I will do my best to explain how I feel about it.
        We are all going to die.  As the old saying goes, no one is going to get out of this alive. With that said, I will proceed. 
         When I was first diagnosed with sarcoidosis, it looked rather grim especially since I weighed just a bit over seventy pounds.  It was a difficult period in my life, but I decided I would look at this as a battle, and battles can be won. Oh sure, you may get beat up a bit, and even knocked out once or twice, but regardless of what it is you are facing in life, you can fight, and I think this is the key. 
         There have been times when it has been really difficult, and sure that little voice somewhere deep down in my inner most depths would say, "Mcdougal, maybe you won't beat this disease," and I would say, "bet me I won't," and one more time I would be back in the war, and I would fight for all my worth. 
         In battles the leaders have to make choices, and they best be the right choice, or it could cost them the lives of the men they have under them.  We also have choices.  If we listen to the doctors, learn our limitations, and also accept them, then we have control over this disease.  If we decide we can do it alone, and without supervision then we have to be willing to accept the circumstances. 
         In my case,have I always made the right choice?  Of course not.  There are times I become very impatient with this disease, and I want my life to be as it once was, but for now that cannot be, so I am listening to the doctor, I am learning I do have limitations, and I am accepting them, and I believe that to some degree by doing this it gives me control over my destiny. 
          To dwell on death is not part of my make-up.  I do not fear death, because I believe that this body and my life is just temporary, and one day as the Bible says, there will be no more suffering or death.  This gives me hope, and has always erased any fear that I might have of death.  This does not mean any of us should rush our deaths, and I think we all should make the most of the time we are given here on earth. To dwell on dying all the time, takes away from the wonderful life we have all been given. 
         In a perfect world, which this is not, we would have no sickness or suffering, but since we do, I think we all have the choice as to how to deal with it.  It isn't always the easiest thing to do, but with faith in God we can do it. Death is as much a part of life as breathing, but it is not something we need think about each and every waking hour. 
          I don't think God wants us to do this. Be ready, yes, but to fear it so much we miss out on each beautiful sunrise and sunset, and all the beauty God has given us would be so sad.  I have chosen to accept this disease as being something I have to live with, but not something that totally controls me. 
            I hope my answer has helped you.  Never give up hope, because tomorrow is a new day, and it well may be the day answers are found.  Until next time, you all have my prayers and my love.  God bless you. 

    Love, Your friend
    Mcdougal Bear
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    How I handle pain

    Hello my friends

      My name is Mcdougal I am a bear, but you are more than welcome to ask me any questions you would like.. I will do my beary best answer them. I was asked how Mcdougal handles pain.
    This is a tough one.  Pain wears you ouy physically as well as emotionally.  I don't want any of you to think I am a super bear, because I'm not.  I'm just a regular bear, but my faith the Lord won't give me anymore than I can handle.
     Sometimes I wonder, But I really believe this.  I try to not dwell on pain, because I find that when I do it will consume me all the more.
      I just happen to be a writer, so when the pain is really bad, when I can, I sit at my computer and work on my books.  Getting lost in my plot lines helps me a lot. When the pain is really bad, I head for water. I have been told I am part Duck, and I use the heating pad. I also listen to music and try to be quiet. 
            I have a little game I would like to share with all of you.  A long time ago I was given a real cute box with a top on it.. I was told that when the pain gets bad, to write it down on a  piece of paper, put it in the box, put the lid back on the box.  And when I do, I say "Lord I am giving this to you."  With that I let go of it, and get on with the day.  It is funny but by writing it down and putting it in the little box, I feel better.  I have shared this with other people with sarcoid and also with diseases through the years, agrees this does help.. At the end of the week throw away the little pieces of paper.. Sometimes there are lots of pieces of paper.. Sometimes there very few, but I promise if you will try it that it will help you.  Just be certain your little box has a top on it, so you can close your troubles and pain away after you put your paper inside.  I do hope this helps you.
           Well my friends, for today I will close, but please e-mail me with any question you might have...Have a great day, and may God bless you..
    Love, your friend,
    McDougal Bear
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    The ups and downs


      Can you believe summer is here?  Trust me, living in Arizona, I believe it.  Quickly the temperatures are inching their way up into the three digits... I don't mind the heat, but  am having a bit of a problem with the grass hoppers which are being blamed on El Nino. Of course, lately, everything is blamed on El Nino.
            Recently I was asked how I deal with the ups and downs of sarcoid, and did it ever get me down.
     I have always been positive, and I credit my parents for this.  I was raisd believing it is just as easy to look at a glass of water as being half full as half empty. These values have helped me deal with the many changes of sarcoid. I have learned to deal with the changes sarcoid brings one day at a time and not let this disease be my whole life.. 
    If by chance I find I am thinking about it too much, it is a given I will feel worse and my syptoms will intensify.  Some days are hard, really hard.. No one likes being in pain.  The limitations this disease have put on my life is  not pleasant.
    Putting this aside, I feel I have so very much to be thankful for, and I refuse the let the can nots control my life.  It makes life so much easier when I  focus on the can do's.
               If I find I am getting down emotionally or physically, then I know it is time to talk to my doctor, and  have him settle my fears. It doesn't do either one of us any good if I let these fears fester. 
    My cat, The Muffin, has been diagnosed with diabetes, and I was told he would be on insulin shots for the rest of his life.Holding my nine year old pet in my lap made me thankful for the insulin, and the fact that by giving him the shots I will have my dear pet for many years to come.  Again it is seeing the glass as half full.  The Muffin's vet is great, and will be helping me deal with this facet of The Muffin's life. To dwell on how bad it will be is not going to help The Muffin, and it will only stress me...  I know he will be fine, but keep in mind I am not very big, and giving a twenty pound cat a shot each day may prove a bit interesting.  If you think about it this makes for an excellent visual.
        Sarcoid is difficult, but when you think about it, even during the "bumpy" times,  we all have so verymuch to be thankful for. Until next time. God bless you.
     Love,Your friend,
    Mcdougal Bear
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    We Are All Winner

            Hi Everyone,

          It's great to be chatting with you today.. Always, before I get up in the morning I say a prayer for all the readers of this newsletter.

           Yesterday was a day for growth in my life.  I think we all have days that stand out more than others, and yesterday was my day.. Sometimes we have them when we talk to another person, or we see something that touches us in a certain way, or possibly we read something.. For me it was spending two awesome hours watching the Iron Man from Hawaii on TV with my mother.  To watch all these athletes in itself was magic, but when you look beneath each person taking part, and look into the whys he or she was doing this then this is when you were really in awe.  All said they grew being part of this, and as a spectator I grew as well, because in them I could see myself.

          Each person had his own goal, and the goal wasn't necessarily to be the first one over the finish line, but rather to overcome an obstacle he might be facing in his life.  This is what touched my heart.  One man was paralyzed and could not walk, yet he completed in all the competitions and he made it over the finish line smiling all the way.  Another was a man that had lost his leg, but all one could see was the victory he was feeling, and this is what you saw in him.  Another was a woman who tried to compete last year but failed due to her weight.. She made up her mind to overcome her weight and enter again this year, and she did.  She too made it over the finish line smiling all the way.. Last but not least was the father and son team who won the hearts of the world not only for entering the Iron Man which was a feat in itself, but because the son who is in his thirties, has muscular sclerosis, and his dad is 59.  He had depended solely on his dad to be in this contest of strength.. We watched at the father swam pulling his son in a boat, as he peddled the bike with his son in front, and last running pushing his son all the way.  Even when the bike broke down they completed what they started out to do, they finished the race. These people in my book are all winners because they finished what they started out to do, and the smiles each had as they crossed the finish line would certainly light up an entire city without any problem.. They all had a special glow and their glow lite up my heart as well.. To all of these fine athletes I commend you.

          Fighting a chronic illness is tough.  There are days when you think you just can't, but just as the father and son team said, "yes, you can." Can't is not part of their vocabulary and it showed in the love they both had for each other.  To attain one goals it takes faith, work, determination, and belief in one's self.  It makes you realize watching these people you don't have to come in first to win, but you have to try.. This is the key, trying.  So long as you are doing the very best you can with each day you are given you are a winner.  We are all winners.  Our goal a cure for sarcoidosis, and with each day that passes we are getting closer to that reality, but we all have to stay in there, do our part, and yes, fight.  Yesterday was a good day for me because once in a while I need to be reminded there are a lot of wonderful things I CAN still do, and I'm not giving up just because it happens to be a bit "bumpy."  I will forge ahead to the finish line, not because I want to be first, but because I want to live to see a cure, and I will.. I owe a lot to these courageous men and women of Iron Man because along with them I also grew as a person.

     Until next time,

    Love and McDougal hugs

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    Diffcult tasks, and how to 
    handle them!

    Hi there,
           I was asked the following question by several of you.  This proves many of us deal with many of the same problems. The question was:   McDougal, what is the most difficult task you face, and how do you handle it?
           This is an excellent question, because for the most part I think I am on auto-drive.  I've had to make so many changes through the years, most of what I do, I do automatically.  Certainly, I might add, some things are more of a challenge than others. 
           Having a perfectionist type personality has definitely gone against me.  The things I could once do in minutes now takes longer.  There are also things I can no longer do at all, which was a big adjustment, but I have still found ways to accomplish what needs to be done.  I believe this is important for us all.
           I have a lot of joint and muscle involvement.  Sweats and fatigue are also a constant reminder of my limitations.  To work around this, each day I set goals, and write them down on a "to do" list.  One thing I learned was not to make my expectations to high, because it was a given if I did, it would be a certain "stress giver."
           I have no choice but to move more slowly, and in the early morning when my two cats are yelling to be fed, it can be annoying to them that I no longer move as fast, but they do get fed and things do get done.  Okay, so my days of moving like Super Man are over.  That's okay.  It's not what you can't do that is important, it is what you can do, as I have so often said.  If it takes you longer, so what.... If you find you  aren't able to do all that is on the list, due to a "bumpy" day, that is okay too.  As we all know, the things we have to do aren't going anywhere.  They will still be there tomorrow.  I've learned to put what is most important in my life first.  The thing that has helped me most, is that I make every effort not to clutter up my life with things I know I am unable to do.  Speaking of stress, this is it.
           Living with a chronic illness is a challenge, but we must never lose sight we are the same people we were before we got sick.  All that is changed is how we approach life.  You know, maybe that's not so bad.  Going more slowly, and even stopping to smell the roses, and yes, even having that second cup of coffee or tea is nice, and with a chronic illness we can take this precious time.  Anyway it is food for thought.

          Until next time, I hope you all have a healthy and wonderful summer. 

    Love, your friend, 
    Mcdougal Bear

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    Founder Cheri
    My Brother
    Chris Bohn

    Co - Founder Dee
    In Memory of
    My Father
    Warren Ratcliff