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March 21, 1999 - Randy
I am a 52 old caucasion school teacher diagnosed with pulmonary sarcoidosis in 1987. I took prednisone until 1994. My life was a living hell. Every breath was tough and the drugs made me psychotic. Ever try to teach special education children while you are loaded on prednisone? I was goofier than the kids! But an absolute miracle happened to me in 1994. I went to India on vacation. I took a drug called chloroquine for protection against malaria. I had a immediate response to the drug. I breathed better and had less lung pain. When I returned to America I read where chloroquine had been used successfully in some sarcoid patients. I emphasize the word some. Yet no doctor, some 20 in number, had ever mentioned this drug to me. I took the drug - one 500 mg tablet every 4 days in the beginning. Progress was slow at first. There was absolutely no side effects to the drug. None. Within 6 months I was off prednisone although it took 1 year to feel normal again. Chloroquine was the magic bullet discovered completely by accident. Many a doctor told me it was a miracle. They never heard of chloroquine being used. If you try it--just stay on it. Go from 4 days to once a week. Do not take the drug every day. It can hurt your eyes. But there is no toxicity if taken every few days. The drug works because it is believed to raise your pH level in cells and alter your immune response. Many doctors won't give it. They are unfamilar with it. But you can find it in any medical library text as a drug used in treatment of sarcoid--and not just skin sarcoid. So if the doctor won't prescribe it, well, tell him you are going down the Amazon. You need something for malaria. I swear by this drug. You can take it forever. No side effects. Once a week. To all sarcoid patients--today I am pain free but I do have stiff lungs. Yet I swim one mile a day and run 2 miles on the treadmill on a 15 percent incline. Top that. Do not despair. Get on this drug and stay on it. Good luck!
Webmaster's Note: The manufacturer of chloroquine tablets recommends one 500 mg dose per week, taken on exactly the same day each week. Irreversible retinal damage has been observed in some patients, especially after prolonged usage; patients taking chloroquine must have frequent eye examinations. In some cases chloroquine has caused nerve damage resulting in deafness, blindness, or convulsive seizures. The drug is fatal to children in doses as low as 750 mg; tablets must be kept locked up and nursing mothers must not take it.
March 13, 1999 - Ginger I am a 41 year old white woman of Scandinavian descent. I was diagnosed with Sarcoidosis two years ago, but I think I have been sufffering with this since my early twenties. After the birth of my first child in 1980 I developed a severe cold and developed a scar on the retina of my right eye. A chest x-ray was done at that time and showed nothing. Based on the scar, a diagnosis of Histoplasmosis was made. Nothing could be done about the blindness. Over the years I suffered from arthritis-like pain and skin rashes that went undiagnosed. In 1996 I developed severe swelling and redness and nodules under the skin in my joints. Also started running a fever, had sore eyes and fatigue. Blood tests only showed a low positive for Rhuematoid Arthritis. I was taking 12 Ibuprophen a day and doctors watched me until March 1997, when I developed severe facial paralysis, and a tremendous increase in my other symptoms. I was losing vision in my good eye, couldn't swallow, hear or eat. I lost 45 pounds. I had an MRI and bronchoscopy and Sarcoidosis was diagnosed. I took 60mg of Prednisone a day for five months and am currently at a dose of 10 every other day. I also take 1500mg of Relefen daily. I developed high blood pressure from the meds and take something for that also. My face has not fully recovered and I still have lots of pain and fatigue. My breathing tests are improving (my lung involvement was in the lymph glands). I have occasional flare-ups and my dose of prednisone is increased when those occur. I have a wonderful Rheumatologist, Neurologist, and Opthamologist, but my lung specialist doesn't seem to have a good understanding of this disease. I am seeking information and support. Please e-mail me.
January 25, 1999 - Sherry I did not read all posts here, but I was diagnosed 3 years ago last October with Phase II sarcoidosis. I woke one morning to what looked like someone had taken a baseball bat to my legs and beat me up. I had arthritis type pain in my joints. I did not go see a doctor because I do not like them. I finally was dragged into a doctor's office by my husband a week later, when I could barely move. The doctor diagnosed sarcoidosis through CT scan and MRI. I couldn't get much info from him except that I had 'maybe 2 years to live' - that was over 3 years ago. I decided I would not waste another $1,800.00 by visiting doctors who couldn't do anything anyway, and I began looking things up in the medical libraries. Nothing seemed promising. I started looking on the net as soon as I got my computer and found a world of info. I called some natural lifestyle centers for natural things I could do. I began taking 500 mg per day of proanthenols (grape seed/pine bark extracts) and 20 mg per day of melatonin. I also take 2000 mg per day of echinacea (4 days taking this, alternating with 3 days off). I drink lots of cold green tea, mixed with ginger root (I simply put a tea bag in my water bottle and a couple of slices of fresh ginger root.) In short, I am still here and feel no worse than I did 3 years ago, if anything, I feel better. I could do more by getting more exercise than I do, as this is a disease of the lymph glands and exercise helps the lymph glands. Another thing these lifestyle centers told me to do was short fasts (1-2 days) and to do them frequently (once per week). After all this, I AM STILL HERE, considering I should have died about a year ago. Hope this helps. Good Luck!
January 24, 1999 - C.P. Jordan I was diagnosed with sarcoidosis last spring, but my doctors tell me there is nothing that can be done. I live in Kentucky and if there is anyone out there who can give me some information please respond a.s.a.p. P.S. I found out January 1999 that it has now spreaded to my lung. Thank you
January 20, 1999 - Anonymous I was diagnosed with Sacro in November of 1996 and was treated with 40 mgs of predisone which took me from a size 6 to a size 12. My weight increased from 130 lbs to 175 lbs in approximately 3 months. Every week I experienced a different kind of side effect, which left me very ill at times. My worst experience with predisone was the eating disorder and constant soreness of joints while trying to support my weight. It's been 2 years since I've been diagnosed with Sacro and the only response I get from my doctor is "I don't know if I can ever take you off of the predisone". I asked him if I'm getting better or is the predisone helping. His response was I don't know. So, I decided to gradually take myself off the medicine. Before I was diagnosed with this disease, I was very active. I roller skated 3 times a week, I skied every winter, I walk a lot, I dance a lot. But due to the side effects of the predisone, I have been limited to not doing anything physical. According to my x-rays from 14 years back, the Sacro has always been there and has been misdiagnosed over the years. I am fortunate that my illness is not severe as others but I also know that staying on predisone for a long period of time can cause permanent damage and that is why I stopped taking the predisone. I'm giving myself approximately 3 months off the medicine and I'm trying to resume my physical endunace to exercise the lungs where the Sacro is present. Actually, it is in the lining of my left lung and my left lymph node. I don't know whether I'm doing the right thing, but I cannot depend on the doctor at this (HMO) clinic who sometimes makes me feel like he does not know any more than I know. It is very important that we learn how our body functions in order to help these physicians with diagnosing our illness. Again, I am very fortunate that I have not suffered to the degree like others. But I feel that I struggle with the side effects of the predisone instead of Sacro. Please feel free to respond with any information, suggestions, or advice. Good luck and God Bless!
January 16, 1999 - Anonymous Hello to all readers. I am a 39 year old black female who suffers from sarcoidosis in the lungs. I was diagnosed 3 years ago. I also have high blood pressure, extreme lower back pain, insulin dependent diabetes, asthma, bronchitis, and depression. I can't take predisone because of the insulin so I just suffer from the sarc, you know, the joint swelling, headaches, full of phelgm, always tired. I tried to get disability but was rejected twice. I was told that I am not sick enough, that my illnesses would get better. How can I work? I am always vomiting up phelgm? I need a support group and some friends who know some of what I am going through to call me so we can help each other. Call me! I am waiting to hear from you.
January 14, 1999 - Berneil I am so happy to have found this site. I was diagnosed with sarcoid in 1983, and no one could tell me much about this disease. I was so lifeless and short of breath. I was told it was common in people who lived in the hot tropics, yet I have lived in Indiana all my life. Then they suggested I was exposed to toxic chemicals. I worked in a dry cleaner when I was a young girl, 18 years old. I took predisone for while and gained a lot of weight. I have had two bouts of pneumonia and two bouts of bronchitis in the years following 1983. Today I no longer smoke and really am not limited to what I can do. I have more breath since I quit smoking, and can do anything. I do have hip pain and chest pains on occasion but always dismissed it until reading some of these comments. It is still something that is baffling to the doctors. I don't feel sick, and sometimes have days when I cough a lot, but to be around me you would not know I had anything wrong. My brother on the other hand, who is 10 years older than me at 62, is on medication for the rest of his life. My sarcoid affects my lungs and his affects his liver. He is sickly most of the time and has low energy. I read here of another family that had 2 people with sarcoid. My doctor found this strange. I hope this info has helped someone. I am doing great with no medication. When I first got sick I was so tired and lifeless and depressed but none of that now. God bless.
January 08, 1999 - Wayne Five years ago I was diagnosed with sarcoid. My problems started when I would exert myself and lay down to sleep. I would get short of breath and cough. I went to my local physician who ordered a chest x-ray. This revealed bilateral hilar adenopathy etc. I was then sent to a pulmonologist and had a scope which confirmed sarcoid. My understanding is that when sarcoid starts in the lungs, it is less likely to be somewhere else. I am currently taking no treatment but still see my pulmonologist. From reading all of the other cases I consider myself very thankful. Is there any additional information you can give me?