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September 20, 2001 - Greg I would refer anyone with Sarcoidosis to the WASOG web site which presents a comprehensive review of the natural history of the disease, diagnosis and treatment - www.pinali.unipd.it/sarcoid. In most cases (70%) the disease spontaneously goes into remission. If you also have big red lumps on your skin (erythema nodosum) then your prognosis is very good. There are a lot of drug treatment options and it's important to note that what works for one person may not work for another. In the absence of any good scientific studies the best thing your doctor can do is go by the book, start at the top of the list with the best known treatment and work down from there. For the record I am a 33 yr old male and I was diagnosed about 12 months ago with chronic stage 4 disease after an abnormal chest x-ray. It's a difficult disease to diagnose because it is necessary to exclude other diseases first. I had blood tests, CAT scans, chest x-rays, lung function tests and a bronchoscopy which confirmed the presence of active granulomas in the lungs. I also had an ultrasound to check my other major organs and this picked up an enlarged spleen which is commonly associated with sarcoid. An echocardiogram was also done to check my heart and to check the pulmonary artery pressure. Early on I had a gallium scan which didn't really tell us anything and recently I had an MRI done on my brain to check for neurosarcoid. I was eventually put on 50mg of prednisolone a day. Because cortcosteroids can cause osteoporosis I had a bone density scan before starting the steroids. Unfortunately the bone scan showed that I already have osteoporosis for which I am taking vitamin D2, calcium and alendronate (Fosamax). I also take an antibiotic (doxycycline) to combat the acne side-effect of the steroids and Ranitidine to prevent stomach ulcer. At one stage I started on methotrexate but I reacted severely to that, coming down with methotrexate-induced lung disease which reduced my DLCO transfer factor to 40% of predicted. Fortunately I recovered after stopping the methotrexate. We then tried azathioprine (Imuran) but I ended up having a hypersensitivity reaction to that involving severe headache, chills, fever, severe joint pain and red spots on the skin. Regular lung function tests have shown that the treatment isn't doing anything in my case so I will shortly be going off all treatment. Then I'm going to get on with my life - just won't be climbing any mountains any time soon.
September 11, 2001 - Bill I have been reading the comments here, it brings back the nightmares I have had with this disease. I would like to add some comments to people who are having trouble getting disability -- you will almost certainly be turned down, as I was, on the first few filings. It took me a long period of time to get it. It is definitely not easy to get, but it can be done. I think that having a very good lawyer is the most important thing. Mine was provided by my employer and is from another part of the country. On another issue from Ann about throwing up unknown contents -- I did that constantly for quite a while. My spouse wanted me to go the the ER all the time over it. Throwing up was the least of my worries. My heart goes out to all of you. When people hear I am on disibility, they act angry because they cannot see what is wrong with me. I think I will send them to this page. May God bless you as he has blessed me.
September 10, 2001 - Toni I'm 25 yrs old and I was diagnosed with sarcoidosis in 1999. By that time it was in stage 3. I started out on 50mg of prednisone and went down to 10mg. I had a relapse so now I'm on 40mg and I have to have oxygen for at least 18hrs a day. There are days when I get up I don't even want to dress my son for school let alone to go to work. I"m scared I might lose my job because I'm out so much, but I can't help it; some days my hole body hurts. I'm weak and can't do anything about it. I would like for somebody to e-mail my boss and let her know the difficulties that I go through. I can't stop working because I have bills to pay and disability don't give you anything. I would not even be able to pay my rent with that.
September 01, 2001 - Firstsym My mother has this disease for years and yes, she has the malar skin rash and thining of the hair. But, her doctor also gave her an insight that she has a touch of lupus. Lupus has been around and the symptoms that you all are describing are ONE AND THE SAME. So, the question is, which has been around longer? I'm living in the Atlanta area and have done research on Lupus and I've found the clinic that is doing testing on Lupus. I would like to get my mom off the steroids. Although, it's keeping her going for now, the long term effects will not do her much good. She has already had bladder surgery that helped for a little because of the steroids the situtation has returned.
August 24, 2001 - Deenise My sister has been hospitalized for 2 weeks now, they did find she has retroperintineal fibrosis. She also has two small spots on her lungs and a small pencil-lead size spot on her brain, near the pituitary gland. The doctors are doing a lumbar puncture today to determine if she has sarcoidosis. I have read several of the posts, does anyone have any similiar experiences? She has lost almost 40 lbs in the last 3 months, high fevers, complete loss of appetite.
August 20, 2001 - Greatful I am a 53 year-old black female who was diagnosed with Sarcardosis in 1978. It was confirmed by a broncoscopy. Since that time I have scaled over on my legs like a fish; I have had lesions in my eyes, been under glaucoma watch; worsened Asthma condition. Recently after being taken off of Predisone my blood presure went sky high. It is now controlled by medication. A few months after that I went into adrenal failure, was hospitalized for more than 20 days before being diagnosed, by then I had lost over 60 lbs. (I needed that, Smile.) After almost dying, I am doing well, thanks to the prayers of many people and God hearing and answering those prayers. It has been about 6 months since the bad times. Oh yes, I went through a period of having high blood sugar levels while taking high doses of cortisone, and also experienced high pressure (glaucoma) levels in my eyes for a month or two. But after tapering my steriod dosage these levels have returned to normal. Now I have several new developments (1) Lesions on my face (and I think maybe in my nose too, (2) Severe arthritis in my left hand and (3) Developed pea and grape size little bead-like bumps under my skin on both hands. Oh yes, I'm also going to see an eye plastic surgon because I have granulomas in my eyes that have grown and need to be removed before they interfere with my sight. I use oxygen for exercising, house work, etc. I try to get plenty of rest. Have not been able to work on a regular or extended basis for over 10 years. But I thank God I am as well as I am. I encourage all of you not to give up or give in. Keep fighting. Any info you have about the little pea like things on my hands would be appreciated. Is anyone using medications other than steriods to treat this stuff yet. For the face lesions? God Bless. Greatful.
August 18, 2001 - T.R. My father was diagnosed with sarcodosis of the central nervous system back in the mid sixties. Since I was quite young, I don't remember exactly when. However, he was unique in that it did NOT show up in his lungs. Unfortunately, he slowly deteriorated until he died in 1972. He had been taking steriods (I think that it was prednisone), though nothing else. I'am happy to see that most people are living with it, though painfully. However, I was wondering if anyone knows of anyone dying of it?
August 10, 2001 - Faye Dear Ones I am a 56 yr old white female and would like to say that I wish I had an answer for all of you. I also have sarcoid and have had it for several years. The only thing my doctor gives me is Imuran 200 mg a day and that now bothers my stomach when I take it. I went to doctors this Tuesday and found I now have damage to my heart and they think to the brain. I am to have a c-scan done next Wed. and a complete liver panel. I do know that I have sarcoid in my eyes to the nerve stem and I have tiny tumors on the palms of my hands and arms and hips. I pray every day that they will find something to help us all but have been told the chances are very slim. I would like to hear from any one who would like to form a support group. God Bless all of you Hope to hear from some of you soon.
August 02, 2001 - Govendet Hello good people. I have just been diagnosed with Sarcoidosis. I am presently taking Pregnisone, I was on 8 a day and now I am taking 6 a day. My symptoms are shortness of breath, fatigue and pains in my shoulders. I missed one day of the pregnisone and I got very sick. I was feverish, weak, nausia and night sweats. Both my lungs are effected. I am not sure how bad my situation is as yet due to the fact that I am going to a lung specialist (palmanologist) on 6/8/2001. I also have to discover if my other body organs have ben effected. Anyone with more information please contact or e-mail me. Or does anyone in South Africa know doctors that I can seek advice from that knows about this illness.
July 30, 2001 - Gloria I was diagnosed with sarcoid in September 1984 at the age of 34. Needless to say, this type of web site was not available at that time. It was indeed a frightening experience due to the lack of knowledge that I possessed. Thank God, that I had a wonderful practitioner who knew immediately what my problem was. The health system in Boston, MA is quite phenomenal. In any case, I experienced a number of set-backs or reoccurrences of the disease and it did indeed effect my life financially and professionally. But I am pleased to say that the reocurrences finally stopped in 1992. I am also pleased to say that I have been sarcoid free since then. So do not lose hope because hopefully "this too shall pass". I would advise anyone who has developed a relationship with this illness as I had, to constantly be vigilant regarding your own health, because sometimes we are more in tune to the reactions of our bodies to the medication than our doctors are. For example,one of my reoccurrences happened in my liver and I was in a great deal of pain, could not eat food properly and lost weight down to a size 2, (prior to that, I was a size 9). I was sent to a liver specialist and he informed me that my sarcoid had indeed returned (this of course was after a biopsy) and suggested that I start taking 75 mg of prednisone. At this time I had been living with sarcoid for a number of years and knew the effects of prednisone quite well. I did not object to taking prednisone again, while weaning off the medication , but I did object to the amount. He in essence felt we needed to start high and work down. I on the other hand knew exactly what would work for me and "my old friend". I told him that I would not take 75mg but I would indeed take 20mg. I was right, I knew how much prednisone my body needed to fight the symptoms of this disease. So ultimately we must try to educate ourselves as to this disease called Sarcoid. That is truly our best defense in addition to finding a wonderful, caring, informed physician as I did to alleviate our fears. Good luck to you all.
July 30, 2001 - Clauida I would like to know what other test can be made to rule out Sarcoidosis. Can the Ace test be normal and you still have Sarcoidosis. Other test have been ruled out along with this. I just read my x-ray report and notice hemangioma on my spine. Does this mean that I have Sarcoidosis? Any information would be helpful. I know you aren't Doctors, any advise? Thanks,
July 27, 2001 - Barbara My brother has had this disease for about seven years. We live in Orlando, Florida. We would like to know of support groups in this area, also nutritional information. He does not want to take steroids. He has a hearty appetite, but can't seem to gain any weight. Your help/knowledge of this is greatly needed! Thank you very much.
July 18, 2001 - Karen I am a 47 year old black female who was diagnosed with sarcoidosis back in 1987. My involvement included the lung, possible liver, and now maybe my brain. I was diagnosed after I worked in a hospital where they were removing asbestos from the bulding I was working in. At that time I was not sure what they were doing other than remodeling that part of the hospital. I worked there at night, they would turn the heat off and all I had to keep warm was a small space heater. I began with some pains in my legs so I would take tylenol every night to keep from aching and then I started with a pain in my chest which later I was hospitalized for and then they decided that I had sarcoidosis. To make a otherwise long story shorter, I was put on predisone which I was winged off a couple of times and then began to take it every day for the last 14 years. I also developed asthma and then began coughing up blood by the cups full. However, I now have a very good doctor who cares about me and is doing everything he can to make my life better. At work I am eligible for Family Medical Leave because of the difficulties that occur with having sarcoidosis. I hope this helps in your fight for all of us with sarcoidosis.
July 17, 2001 - Cynthia Hi, I don't know if this is the right place to post but I'll give it a try. I was sick for 11 months before finally getting a referral to a lung specialist who then suggested surgery for diagnosis of Sarcoidosis or Lymphoma. In Jan 2001 (1 year after first presenting) I was told that I had Sarcoidosis and within weeks started taking Prednisone. I am a 36 year old female. In the past 6 months I have put on 25 pounds - mostly in my abdomen, but also have a puffy face and stretch marks on my thighs. I also have the acne on my face, back and chest. There are other side effects but the weight gain is most disturbing, especially in the abdomen area as this is difficult for women to counteract. I exercise (walking & strength training/toning) but nothing seems to help. Just put on another 5 pounds in the past week. This is discouraging because I never had a weight problem prior to taking Prednisone -- I was the same size for years - now I don't know what to do. I eat a low-salt diet free of pork and red-meat. Don't know what else to do. Just found out that I will be on prednisone until at least March of 2002 -- so at a minimum, I will be on the meds for 1-2 years based on my last doctor's appointment. Does anyone have any suggestions for what I may be able to do to control the weight gain, stretch marks and mood swings?
July 15, 2001 - Alice My sarcoidosis is acting up again. My ankles are starting to ache. I was diagnosed in August of 1999. I have gained a lot of weight, but my doctors have never put me on predisone. I suffer with my symptoms in hopes it will go away .I also suffer with emphysema. Is there anyone out there having similar symptoms?.
July 11, 2001 - Jaymes My mom recently passed away due to complication from Sarcadosis. For the past seven years she had suffered with the illness. Despite her failing health, she was denied disability benefits. Now, there is an appeals case to determine if she was eligible for benefits. Can it be proven that Sarcadosis is considered a disability? And are there documented facts proving this fact?
July 10, 2001 - Jeff In June of 2001 I was diagnosed with Sarcoidosis. It actaully started with a visit to my eye doctor to get a new glass prescription in April. I had picked up my glasses and the the prescription seemed all wrong so I went back to the doctor and in examining my eyes he told me I had Uvitious. This is a situation where the immune system is attacking the eye. Cause unknown cure unknown but steriods could reduce the symptoms. The drops did control the symptoms but he and my primary care doctor did a series of tests to try to find a cause. The first battery of tests showed nothing. Then I had a back spasm and he prescribed the usual muscle relaxants. This caused me to become very short of breath and I reported it to him. So he had me take another chest x-ray. This x-ray compared to the first showed a growth or inflamation of my lymph glands. A MRI was done and confirmed the condition. Fearing that it could be lymphoma a bioposy was done which identified my problem as Sarcoidosis; better then lymphoma but with no known cause or cure. I have started predisone treatment of 40 mg for one week and decreasing by 10 mg each week afterwards to zero. I am a white male 46 years old. I also am a kidney stone maker in that I pass them regularly, foutunately the medicine I am using now keeps them small. I have night sweats every night, at least one fever a day to deal with every day now. I am unable to sleep an entire night as I need to visit the restroom 4 to 5 times nightly. Does anyone else have this complication?
July 06, 2001 - Ann I have been ill for about 13 months now. My symptoms are left chest pain, shortness of breath, fatigue, Mortons' Neroma, elevated CEA test. I was diagnosed for having a pulmonary tumor in January, 2001 and then advised I didn't have one in March, 2001. I have had numerous nodules which have been removed surgically from the groin and abdomen or they have simply disappeared on their own. I am seeing a ENT this week to see if perhaps he could shed some light on this troubling health situation. I suspect he will find a nodule in the neck or larynyx since, I have had some swelling, hoarseness and expelling of chunks of something upon coughing (not stomach vomiting). Bronchoscopy, MRI and monitoring of CEA and Gastroscopy Endoscopy would seem the appropriate action plan. So I'll make a very insistant plea for help! Pain is at times unbearable and frightening. Hope this helps!
July 05, 2001 - Odeal I am a black male 39 years old and have been diagnosed with sarcodosis in 1995. It affects my wrist, hand, hips, and sometimes my mood swings. What I would like to know has anyone claimed disablity from this disease? If so, please give me details on how to go about it. thank you.
July 03, 2001 - Mike I was diagnosised with sarcoid in 1989, and fortunately it has partially gone into remission after 5 years of great fatique and joint pain, skin rashes, etc, etc, etc. I was lucky that I do not have any lung involvment. It took me years to even get my PCP to agree that I have sarcoid. The only thing I have found that helps is to try to organize your life to be as stress free as you can, and get plenty of sleep. Also, find a good naturopath to work with. Doctors will not figure out what to do. We all have to figure it out what works for us. Good luck.