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February 27, 1997 - K. L. S. I am a 39 year old white female who was diagnosed with Sarcoidosis 2 years ago today. I have been on Prednisone for the past 2 years and I have gained a lot of weight and my self-esteem has hit bottom. I feel bad all of the time. My stomah burns constantly and my ankles swell and my joints ache and I have absolutely no energy at all. I live in a very small North Louisiana town where there are 5 ladies I know of, who live in a 4 mile radius, who have been diagnosed with Sarcoidosis. My first symptoms were red nodules on the lower part of my legs (erythema nodosum), fever, aches and pains, swollen ankles, tiredness. I had a medianoscopy and was diagnosed with Sarcoidosis. There are no specialists here and my doctor's only treatment is prednisone. We raise and lower and raise and lower the dose, it is a never ending battle, I never feel good and I am having a hard time coping with everything. I am very interested in alternative treatments. I would love to talk to others with the same disease. PLEASE CONTACT ME.
February 25, 1997 - Jane I am interested in any research that is currently being done on this disease. I am not linked to the net. I live in Australia. I have been suffering from this condition for 2 and a half years and I am not aware of any research being done on this condition in Australia. If you could assist me or refer me to someone, please write to me at my home address.
February 23, 1997 - Dawn I am a 49 year old African-American female who was diagnosed with Sarcoidosis in 1991 after a breast biopsy. I had been complaining of fatigue, joint pain, night sweats, and general malaise for over 20 years. I was told that I was a malingerer and that I needed to talk with a psychiatrist. My symptoms continued progressing to the point that I was having to reduce my work load because of my fatigue. I have been on prednisone for the past six years off and on. Whenever I stop prednisone, within one to two months I relapse and am worse than before. In June of 1996, I went into congestive heart failure secondary to Sarcoidosis as well as pulmonary hypertension or cor pulmonale and I am now on oxygen therapy. I was hospitalized from June, 96 to Dec., 96 four different times. Currently I am unable to work and the doctors have determined that I am permanently and totally disabled. I am fighting with the Veterans Administration as well as Social Security. We have been able to form a support group with the Atlanta VA and publish a quarterly newsletter. Anyone who would like to receive the newsletter or be listed on our pen pal list please e-mail me and I will be glad to send you a copy and include your name and address. I look forward to communicating with others who have Sarcoidosis.
February 21, 1997 - C. Potthoff I am a 28 yr. old female (white) and was diagnosed with sarcoidosis 1 year ago. I was very sick with a low-grade fever, dry cough, wheezing, severe joint pain which only vicadin would relieve. I was in bed for over a month till a family doctor did an x-ray and the next day I had a medianoscopy to find my lungs were covered with sarcoid. I took prednisone for 2 months and I now am starting to have pain in my side, shortness of breath, and some chest pain. I assumed that I would not have a recurrence but after reading your letters it looks like I may be getting the symptoms again. I am very scared. These letters help me to not be so afraid and I know there are others out there. It's true that no one at work or family or friends really understands. Thanks for listening.
February 11, 1997 - Jane Information needed on the use of melatonin in the treatment of sarcoidosis.
February 11, 1997 - Carol Thank you for this website! I was diagnosed 20 years ago when I went for my annual employee screening. I was working at a medical clinic for a major HMO, and thought I had become infected by a patient. The doctors that I worked with told me that it was not contagious. I didn't know what to think. I had never heard of this condition. I ran to the medical library to get all the information I could, only to find a few brief paragraghs. No one really had much information. I thought I was the only one in the world with this disease. The sarcoidosis has affected my respiratory system. I've been in and out of remission three times, each time it comes back being worse than the last. I began the prednisone treatment four years after I was diagnosed. The prednisone, even though it works to treat the problem, takes me on a real rollercoaster ride. It's "Murphy's Law" what can happen does, excessive weight gain, high blood pressure, potassium wasting, and severe muscle spasms throughout my body. On top of that I became addicted to the prednisone. The weaning off period takes years. When I tried to get off the prednisone, skin lesions begin to form all over my face. Around my eyes, nose, mouth and ears. Then I started the injections to try and keep them at a minimum. I've been on and off oxygen therapy. I'm tired all the time, and haven't been able to keep a job. I, too am looking for a support group in the LA area. Please share any information you may have. Thanks to all of you for sharing your experiences.
February 6, 1997 - Sam As others have mentioned, it is somehow a relief to see this resource out there. Let me share who I am, what I have experienced, and what I have learned in as few words as possible. I am a 38 year old male of Norwegian / English / Bohemian / American Indian decent. I am healthy other than the sarcoid that is advancing in my body. I suffered a lung collapse in 1991. That is when they did the biopsy and discovered the disease. I was fine until 1992 when I experienced night sweats and weight loss. My doctor put me on Prednisone (40 tapering down to 5) for six months. I puffed up like a blow fish and experienced other side effects from the steroid. My doctor wanted me to continue on Prednisone at 5 for an indefinite period. I said no and looked around for another possibility. I found a Chinese herbalist who gave me a nasty tasting tea to drink twice a day. Mind you, this was no new age feel good hipster. He was a trained doctor from the ancient schools of medicine in China. Anyway, I kept up with the tea for about three months and kept in touch with my doctor. My x-rays and blood work suggested that the disease was held in check. I stopped taking the tea and was fine until this past month when my wife noticed a mark on my back. The biopsy proved it to be sarcoid. Now they think they have found another lump in my neck. They haven’t decided if it is sarcoid or a slow leak in my lungs causing air bubbles in my body. I am going to go back to my herbalist, but I will bring all the ideas I have found on this list to my doctor’s attention as well. (Thanks to all who shared!) I will ask my doctor to look into the treatment of sarcoid using: millimeter wave therapy, DHEA, Solu-Medrol, methotrexate, immuran, and melatonin. I have no idea what these things are, so I cannot recommend any of them yet. My eye doctor researched sarcoid and believes that it can be caused by the spore of a particular pine tree that grows in clay soil. I think that this is evidence that it can be caused by respiratory irritants. I believe the reason more research is not available is because it primarily attacks women of color (at least here in the States). My pulmonary therapist tells me that she has seen a remarkable increase in patients diagnosed with sarcoid in the past two years. I don’t know if this is due to better diagnostic measures, greater awareness, or an actual increase in the stricken population. Just one more note - I’m not sure what this means. D. Robish said (on 1/25 on this list) that he is sensitive to electricity and magnetic energy. I found this interesting because I cannot explain why electric watches stop running when I wear them for any length of time and why getting shocked when wiring my house never hurts that bad. I would welcome any e-mail related to the subject of sarcoid, its treatment, and coping with the problem.
February 4, 1997 - Gloria Yesterday I was released from Loma Linda University Medical Center after receiving a pituitary resection on Mon., Jan. 27, 1997. At first, it was thought that I had one giant tumor growing on my pituitary gland, and that it was non-functional. After several days' wait for the pathology, it was diagnosed as two tumors and they were sarcoids. Starting in early 1994, and continuing to the present, I developed allergies. I never had allergies all my life, and here I was now allergic to dust, dust mites, mesquite, and Johnson Grass. From 1994, when my health began to decline, I always blamed the allergies. I have to admit where I live now there is a lot of dust. Previously, I always lived near the ocean. My periods stopped in May, 94. July, 94 I had the worst headaches in my life for 3 weeks straight and then they just left. I lost 18 lbs. while sick in bed, and I continued on a low-fat diet and lost 75 lbs. So from '94 to the present I was plagued with allergies. Even the shots didn't work on me. In June, '96 while visiting the doctor for a routine sinus infection, I told him about the absence of periods. I had to receive a referral for an OB/GYN for possible post-menopause. Finally I got the appointment in Aug.'94 and did all the routine tests. All my hormones weren't there. I finally received another referral for an endocrinologist. Again, more blood tests. Finally, Oct. 7 I had an MRI. It showed a mass 1.5 x 2 cm. I received another referral for a neurosurgeon at Loma Linda, and took another MRI in November. Surgery for removal was Nov. 18. On my 2nd MRI, it showed that I also had pansinusitis, that's a big sinus infection in all my sinus cavities, and four days before the scheduled surgery, it was cancelled. On Dec. 5, I had surgery on my sinuses for removal of all that junk. On January 15, I was scheduled for neurosurgery Jan. 22nd, and Jan. 23rd, another MRI. Couldn't believe it but my sinuses were all back to the way they were originally, infected. They went ahead with the surgery on Jan. 27th. I came home yesterday, Feb. 3rd and I'm doing very well. I'm on prednisone-only at this time until I get back to the doctor in 2 weeks. I'm a 47 year old female and now my family gets to look at Mom bald; actually I have peach fuzz on my head now. Please feel free to email me about your story.
February 3, 1997 - Lazaro My mother has been diagnosed with cancer. She has had several tumors removed from her thyroid glands. During the routine examinations, some dark regions were found in both of her lungs. My mother explained to her doctors that as a young girl in Cuba, she was exposed to tuberculosis fairly frequently, and that in fact she had been treated for the disease. The regions that are in the lungs have not reacted to treatment with radioactive iodine given her in order to treat her thyroid after her operation. We now have several conflicting diagnoses and are not sure what to believe. My mother had the regions in her lungs diagnosed 2 to 3 years ago as cancer. Now, because of the cancer in her thyroids, the doctors are saying that there is a good chance that she has lung cancer. This seems really odd for several reasons. 1. She has had a bronchoscopy which came back negative. 2. And most important, my mother has a sister who recently passed who suffered from sarcoidosis. 3. There are almost no cases of terminal cancer in our family history. Now, I know this is a tall order, but is there anywhere we can turn? Thank You.
January 30, 1997 - J.M. I've written once before. I was diagnosed in 1989 with no real symptoms until last year. Since then I've had more events and more severe events. I lost my peripheral vision for a while, constant headaches, nausea comes and goes, weakness and fatigue (right now), swollen liver, heart stabbing (my sarcoids were originally diagnosed in my para-cardial lymph nodes with biopsy). My eyes are tearing and scratchy on and off. I also have pain and on again off again swelling in my bone joints. I'm afraid that this disease is spreading. I'm currently not on prednisone or any other drug. I live 250 miles ouside Anchorage, Alaska and am in good health. I don't seem to have involvment in my lungs. A small node was seen on x-ray on my kidney. It's been a hell of a time. I'm about to go to Seattle for an exam and whatever. I see others going thru the same difficult issues and my heart and good wishes go out to all of you. It has helped just to read that I'm not alone. I'll write again after my trip. Be well.
January 30, 1997 - Joanna I am a 58 year old female. I was diagnosed with sarcoid after a lung biopsy about 27 years ago. I was immediately put on prednisone. Nine months after the treatment was started, I had 4 kidney stones removed (in answer to the question about stones). One more kidney stone developed after the 4 were surgically removed. That one has remained in my kidney all these years, with no apparent ill effects. I continue to remain active and take a great deal of nutritional supplements in hopes of preventing stones and just staying in as healthy a condition as possible. Hard to believe, so many of us and no studies to try and narrow down a possible cause. Interesting to read some of your possible causes. For myself, before I was diagnosed I did a lot of craft work, and work with various spray glues, and thought there might have been some connection. Of course, I never had anyone to discuss these ideas with. All these many years later, I now share them with you.
January 30, 1997 - R. Whitney I am a white male, age 45. I have had sarcoid for over 10 years. From reading the comments that other people have written, I can thank god that my condition isn't worse. The negative effect that I have from the sarcoid, is kidney stones. Apparently, my sarcoid creates excessive calcium in my system, which causes the kidney stones. I am being treated with 5 mg of prednisone daily. I am not having symptoms that some of the other writers have. I had a pulmonary test done a couple of years ago and I had a little better than average lung capacity. I would like to hear from any others that have kidney stone problems.
January 29, 1997 - D. B. Reid, Jr. I was diagnoised with sarcodious in 1989. I'm 46 now. I went through TB therapy for a year in 1989 and also went through fungus treatments for about a year using medicine used to treat women for yeast infection. Then they thought I had hystoplasmosis. After about 2 years, I went into remission for about 2 years. During this time, I had 2 bronchoscopies done. Then in December 1993, I failed my pulmonary functions test at work so my doctor decided to put me in the hospital and do open lung biopsy on me. At the time, I was taking Prednisone at 40 mg per day. After surgery, I didn't heal right and was in the hospital for 2 weeks with draining tubes in my side. They sent me home with a Hymlic bag on me for 2 more months. I ended up being off work for 7 months in 1994 and on disability. Since then, I seem to have this in the upper 1/3 of both lungs. I'm still taking Prednisone, but only 10 mg alternating with 5 mg. Also, he started me on DHEA at 50 mg everyday. I went for my 3 month checkup 2 weeks ago and he did another pulmonary test on me. According to his diagnosis, I will be a cripple in 3 1/2 to 4 years. We don't know how I got this, but I remember being treated for pluresy about 20 years ago. Any thoughts on this, please e-mail me.
January 29, 1997 - J. McLaurin This page is wonderful. Thank you very much for posting my letter. I have been using your page for months and always send your address to people who have sarcoidosis. This page should be awarded for it's dedication to allowing others to voice their concerns.
January 28, 1997 - J. McLaurin Sometimes when not much is known about a subject, not many organizations, people, etc. will take a risk and raise awareness to that particular subject. That’s why I must congratulate everyone that’s involved in this website on what you are doing for sarcoidosis awareness. It's great to be able to read information about sarcoidosis written by the professionals. They supply you with the statistics. They tell you how they believe this condition begins or how it can be treated. That’s all great, but when you can read from those who are fighting this condition each and every day, it gives you a more personal insight. Just reading the entries of this site gives you a feeling of how desperate we are to find treatment that works. Or better yet, a cure. I have been personally affected by sarcoidosis in my life. This is why I am so involved in spreading the word about this mysterious condition. I have created a webpage for others to view. I wear my purple ribbon and keep a sarcoidosis awareness button on my computer backpack. It’s great for starting conversations. People are always interested in knowing exactly what sarcoidosis is. Within the last several months, I have met quite a few people who have been diagnosed with sarcoidosis. Or know of someone who has the condition. This leads me to the conclusion that the statistics are incorrect. These statistics are not even close to accurate. I worked with my sister several Saturdays at flea markets in the Philadelphia area. These were not large flea markets. During these weekends, we met quite a few people who have sarcoidosis. We noticed that a large portion of them were in the hair business such as beauticians or barbers. We also noticed that many of the affected people worked in the medical field. I often wonder if there is something in hairspray that can cause it in some cases. Well, in closing, I know that nothing is going to happen overnight. However, the more we educate others about this condition the better. Reading the entries on this site alone tells me that many people with sarcoidosis are misdiagnosed. It’s scary to think of the people who believe they presently have some other condition who will later be diagnosed with having sarcoidosis. The more aware we are about it the less likely the misdiagnosis will occur. Thank you all. Keep fighting and let's make sarcoidosis a disease of the past. If you know of some information that I can use please e-mail me.
January 26, 1997 - B. Fernandes I was diagnosed in 1989. Many stories are so similar that I am surprised that the medical community has not made a connection for this horrible disease.
January 25, 1997 - D. Robish So grateful to find this on the net. Anyone know of any support groups or research groups in the LA area? I am so desperately miserable and have been putting up with this apparently since the age of 2, now 45. I have not knowingly been exposed to TB but interestingly enough my father had lymphosarcoma and my mom had melanoma when I was conceived. I was diagnosed more by history than anything else 'cause the biopsies always come back non-diagnostic tissue. I surly have a lot of the symptoms you all describe. The hardest thing for me is the burning pain that nothing helps. Doctor's will not try to relieve the pain, because it is a chronic condition and they worry about addiction. I'm more worried about suicide from inability to tolerate pain day in and day out. Don't worry, that goes against everything I believe in, but the temptation is hard sometimes. Not only do I have to put up with people thinking I'm lazy and faking, but, as the doctor's say: "Don't ask what it is cause we don't know and we don't know how to treat it, so just ignore it." Yeah, right. Intriguingly, I am very sensitive to electricity and magnetic energy and am able to quite often pick up earthquakes when they are coming (they exude EM energy before rupturing, so don't think I'm a complete flake. I feel wonderful after they occur). Only other relief I ever got other than very strong pain medicine was a wopping dose of Solu-Medrol they gave me thinking I had an asthma attack. My chest x-rays are almost always abnormal, but the bloodwork for the sarcoid test is always normal. This is nuts. I am presently off work due to shoulder surgery that is not healing, but I'm terrified because I don't think I can work anymore. I can't do anything without drugging myself and even then I never have relief. I am asking to go to a pain control clinic when my shoulder is healed because I don't need to be a drug addict as well as dependent. Anyone who wishes to E-Mail me is appreciated especially if you have any research info (it would have to be free as I have no insurance except worker's comp) and have been out of work for a year. I just want desperately to get back to my old happy self with just normal aches and pains. I'm 45 not 105. Help please!
January 24, 1997 - F. W. Johnson My son has been diagnosed with Sarcoidosis and it is affecting the nervous system. Does this in fact help in this case. Also we have been searching for a specialist in Sarcoidosis who is experienced in the nervous system. Any information may be sent to me at the above e-mail address. Thank You.
January 17, 1997 - Susan I am 29 years old. I was diagnosed with sarcoidosis 5 years ago. My condition is getting worse, and I would like any information on treatment. I am currently taking Prednisone, without any results. I have granulomas around the lungs, and erythema nodosum in my legs and arms.
January 16, 1997 - F.Reynolds I was having problems with a chronic cough for months which my GP and an allergist could not control with antiobiotics, change in diet to control allergies, a one week dose of prednisone, etc. There was still no change in my cough and my allergist recommended a chest X-Ray and also told my GP about a lump in my right gland that I had pointed out to the allergist. My GP said the X-Ray didn't show anything and that the lump was just a swollen lymph node. I was insulted by the fact that he took all of 5 seconds to look at the X-Ray and check out the lymph node and said everything's fine. After much persistence on my part and after my GP took another look at my X-Ray - he said there was a "fullness" in my right lung and thought I should have a CT scan. I was finally diagnosed as having Sarcoidosis in my lung with the CT scan showing Scarring - No active node. I had a bronchoscopy done January 3, 1997 and was diagnosed with Sarcoidosis. My GP said that I should have been sick years ago. I have been put on Prednisone for 6 months. After reading the histories of people with this disease on the Net, I am very scared. My pulmonologist told me that I would probably live a normal life expectancy (that it was not cancer) and that Prednisone was the only known drug to help with the symptoms but wasn't guaranteed to prevent it from coming back. It sounded as though most of my problems would come from the Prednisone and not the symptoms people described on the Net. I think I have been naive to think I won't have any more symptoms once I start the Prednisone. I am still coughing, however. I now see from reading these medical histories that a whole host of problems exist from the disease itself and can be very debilitating and in fact, life threatening. It sounds as though there can be many connections between TB (which my Grandparents died from) as well as trauma. It also seems as though no one knows what the heck causes it and that there is no cure for it. I have also picked up some clues from the medical histories about possible symptoms which fit my history i.e. bronchitis, bone spurs, chronic cough, headaches (pms, stress or otherwise related). I don't think my family and I are fully prepared for what I could possibly face from this disease, other than the fact that my husband is worried I'll gain weight (am already about 50 lbs. overweight). I too am interested in whether this is a hereditary disease. Do I warn my sister who is also plagued by allergies? What about my children? I am very worried about what the future holds for all of us sufferers if no one knows much about this disease. Having just been diagnosed (January 8, 1997), I haven't done any real research on Sarcoidosis until today. It sounds like (just from reading the medical histories only) that nothing much is being done in the way of research and finding a cure for the disease. It seems as though there has been much misdiagnosis and people have suffered treatments which seem to fit other diseases, like chemo which I thought was only a cancer treatment. I would appreciate any information related to this subject and where to look for it. I do not have the Net at home, so I am researching the Net when I have "Twiddle Time" at work (that's few and far between). Is there an advocacy group actively working on finding a cause and cure for this disease? What can we do as sufferers to help in this regard?
January 16, 1997 - J. M. I am a 47 year old male diagnosed with sarcoidosis and a large malignant melanoma in 1989. The sarcoidosis was discovered in my para-cardial lymph nodes. I have become very "chemically intolerant". I have read some of the symptoms others have written about and have had various symptoms myself. I was self employed as an artist and designed and built "energy homes" for most of my working life. My exposure to some pretty heavy-duty chemicals was in both my art and the homes I built. I no longer do art nor can I be around most of the products we take for granted as safe. I was very touched in reading comments from others with this condition and just thought I'd share some also, thanks.
January 12, 1997 - Marion I am a 62 year old female. I have been diagnosed with sarcoidosis in conjunction with my lungs about two years ago, although I believe I had symptoms 10 years before that. I was treated at first with 60 mg/day of prednisone for several months, then down to 5 mg/day after 6 months. I was off prednisone for 5 months then put back on. I don't have breathing problems, nor are any of my other organs involved. I do get skin lesions at times. My eyes have been affected. This past December, I had a cataract operation in one eye. However, it is difficult to explain to anybody as I lead a completely normal life. I am very active. I walk daily. I semi-retired at the age of 61 and am now working part time. My cataract operation is successful, and some time in the near future, I will have to have the other eye done. After reading some of the other comments, I guess I shouldn't complain about my problems. [Additional comment added January 14, 1997] In regards to tuberculosis, my father died of miner's asthma and TB at the age of 37. My mother and brother contracted TB from him and both were hospitalized for pneumo-thorax treatment. At the time my dad was diagnosed, it was noted that I had healed lesions on my lungs. I was ten years old, so that was at least 45 years ago. I find it interesting that there seems to be some correlation between TB and sarcoidosis. For the past 15 years or so, I have been susceptible to inflammatory disease. I was treated for costochondritis during my menopause. I had some arthritis and disc degeneration in my neck when I was about 35 years old. I still have some bouts with arthritis, but not debilitating. I have been healthy otherwise and lead a very active life.
January 7, 1997 - A. Ferguson I am a 34 year old male residing in Australia (English descent). I was diagnosed with Sarcoidosis 4 years ago through a biopsy of the liver. I have the disease in the lungs but more so in my liver. I have been on Prednisone for about two years reduced now to 5 mg per day. Apparently the disease has been somewhat retarded by this treatment but the swelling of the liver and continual discomforture has not. The pain is caused by the swelling of the stomach after meals pushing the liver into the rib cage. This has led me to the unfortunate position of having to either lie down or walk around after eating. I am getting increasingly frustrated given that my medical specialists are sure that due to the disease seemingly being held in check, that I am getting better. I have heard that another patient with Sarcoidosis in the liver has experienced exactly the same symptoms. Anyway thanks for this newsgroup, I will follow it with interest.
January 6, 1997 - J. Turemis I was diagnosed with sarcoidosis in November 1994 and have been on prednisone ever since. I have never been able to completely get off prednisone for more than two weeks. I have signs of this dreaded condition in my eyes, lungs and now the liver. The major problem I have experienced is trying to explain this condition to others. People who do not suffer from it, do not understand what it is, or how you feel. On the face of it, I look like a normal healthy person, I try and exercise and eat healthy. I find it hard to explain to people who I work with, family or friend, how I got this condition, how long I have to be on medication, etc. I would desperately like to start a support group for sarcoidosis sufferers or find out about one that may have already started. I would dearly love to hear from fellow sufferers and maybe establish a support network where we can assist each other.
January 6, 1997 - R. Gahan Some good news. I have posted comments on this page in the past (October 11, 1996) and told you of my Sarcoidosis details. I am now very pleased to say that my Sarcoidosis on my lung has cleared and I should now be well on the way to the road to recovery. The doctors said I responded exceptionally well to the Pulmicort 200 Turbohaler which I will continue to take and will be reviewed in April, 1997 following a lung x-ray. I was told that it may 'come back' but no-one would be able to tell if and when. Good luck to everyone.
January 6, 1997 - Caren I am 31 and I was diagnosed with sarcoidosis in 1991. I have an identical twin sister, Carol, who was recently diagnosed with sarcoidosis in 1994. My sarcoidosis first presented itself in my eyes and parotid gland, then settled into my lungs. Over the years my lungs worsened until I was put on Prednisone to reduce the inflammation in my lungs. My chest x-ray shows improvement, however, the Pulmonary Lung Function Test results have stayed the same. I do not like being on prednisone and will not go on it again unless it's detrimental to my life if I don’t. My twin sister suffered from severe chest pain, fatigue and dry sore eyes for about 2 years before a chest x-ray was done and the sarcoidosis diagnosis was made. She has not had to go on prednisone as of yet. We both suffer from headaches, back and neck pain, shortness of breath, wheeziness, and dry cough. We both have been on and off steroid inhalers. We are very interested in hearing about alternative treatments - other than steroids - such as melatonin. We would greatly appreciate any more information on sarcoidosis. Hearing other peoples accounts of this disease has been enlightening. Please e-mail me.
January 6, 1997 - Anonymous I am a 36 year old white female diagnosed by open chest biopsy with sarcoidosis in June 1994. I have probably had the disease much longer, but was misdiagnosed with other conditions. The first two years have been trying, but I managed a full time schedule as a medical social worker. Over the past year, I have become progressively more ill, relapsing each time I attempted to ween from steroids. In May, the steroids just stopped controlling the symptoms the way they used to. I began using injected methotrexate in September along with prednisone. In August and November, I was so sick that I required hospitalization. Now, it has attacked my joints, and it is difficult to walk. I have had to quit my job (which has been devestating financially and emotionally). I continue to be ill and no one knows quite what to make of my condition. Does anyone have any information on alternative drugs to prednisone, methotrexate, and immuran? Has anyone else had prednisone just stop working -- and if so, have you been given any explanation for why it happened? Anyone found any effective treatment for sarcoid arthritis? I have been sick for several months, I am ready for something new. I have very good doctors, but they are stumped. Anyone out there interested in exchanging information about sarcoidosis please contact me.
January 6, 1997 - J. Connolly I believe I have had sarcoidosis most of my life in one form or another. I had a very bad time during my puberty years with chronic depression, anorexia, itchy eyes, fatigue, bruising etc. I have, for the most part been in remission with the exception of flare-ups during my pregnancies. I am now 42 years old and last January I experienced a very bad flare-up that lasted 3 months. My legs were covered with Erythema Nodosum (painful nodules, or bruises). My lungs were affected, and the depression was unbearable, not to mention the fatigue. I find the medical profession somewhat closed-mouthed about this disease. I am not sure if it is because they do not know a great deal about sarcoidosis or because they can only treat the symptoms. It is great to connect with others who are just like I am. I am interested in hearing more about sarcoidosis.
January 5, 1997 - J. Genova I am a 39 year old white male. I have been diagnosed with sarcoidosis since 1988, and have been on prednisone therapy ever since. My condition seems to have taken a turn for the worse. It seems to flare up more in the winter than the summer months; that is, when my doctor increases dosage to 30-40 mg from 10 mg per day over a 12 month period. I would stay off for a few months, then my condition would worsen, and back on prednisone. This time I know when I go to my next appointment at the end of the month he is going to increase my dosage, this happens every year the same song and dance. The doctor keeps saying that it has to burn itself out and that there is no other treatment, there is no cure. I have increasing side effects from the prednisone and this condition does not want to go away. There seems to be no hope in sight for me, it has taken a toll on my life, I am in misery and no one understands. The following are the areas of involvement: lungs, lymph nodes, skin, and nasal. Because of the continued use of prednisone, I have developed kidney stones, stomach ulsers, weight gain, and sinus headaches. My immune system is very low and I am always catching a cold and constantly fatigued. If anyone knows about the use of melatonin and has any information or would like to share experiences or information, please contact me.
January 4, 1997 - A. Elvrom Glad to see so much information on the Net. I have had Sarcoidois since 1982, lungs, which did not require treatment at that time. The past few years have been another story. My joints are now effected and I am unable to go past three months without prednisone and a flare-up. I am using a lot of vitamin supplements, strict diet (no dairy, sugar, chocolate) which has helped with the weight.
January 2, 1997 - M. Uretsky I was diagnosed with Sarcoidosis just last week after a mediastinoscopy. A broncoscopy a week before that was inconclusive primarily because the laproscope wasn't working properly at the time of the procedure. Anyway, I am down to 5 mg of prednisone/day but am not sure of treatment just yet. P.S. I'm a 35 year old male in otherwise good health. Glad to see this forum exists.