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December 5, 1996 - P. Smith Originally diagnosed as lymphoma in April, 1996, a biopsy and other testing showed that I have Sarcoidosis. My father's fraternal twin suffered from this in the early 1950s and was off from work for 18 months. I am 42 years old and was on 30 mg of Prednisone and now am down to 10 mg a day, but I have had increasing side effects from the medication and the disease including fungal infections that take several months to overcome and then recur, sinus infections for which I had a CT scan to see if there is sarcoid tissue causing the problem and I have put off calling the doctor for the results, and corneal erosions of my eyes which are recurrent and about as painful as anything I have ever experienced. The top layer of the eye called the epithelial comes off exposing the nerves and then heals, but tears off again when I open my eyes as I awaken. The opthamologist states that the Prednisone has made the tissue thin and slow to heal, so that he punctured the eye with a 30 gauge needle in the area of the lesion about 40 times to give the epithelial tissue something to hold onto as it grows back over the area. I have other problems too, but they don't seem as serious right now. I am constantly fatigued and just don't feel like discussing the problem with anyone who doesn't have some knowledge of it. I have been missing work because of the ocular problems and wonder if I'm going to end up disabled, although my lymph node swelling in the lungs considerably improved through the Prednisone treatment. Psychologically, I am depressed, especially when I wonder if my children will have to deal with this illness. As far as trauma being causative in the condition, I wonder if the only reason for a thorough checkout was because of an injury and that finding the sarcoid was a coincidence. My other thought is that if the doctor asks about prior traumas, a link is made with the trauma even though it is unrelated. For example, there is some thought that MS is an underlying condition that is accelerated or excited by trauma to the neck, but this is only done from a perspective way down the road and I don't think has any scientific basis. But who knows. My ancestral background is Swiss and east Euopean, so I don't fit the profile. Hang in there everyone.
December 05, 1996 - P. Kohlie My mother is 57 years old and was diagnosed with sarcoidosis in June of 1996. She only has central nervous system involvement. She is not responding to steroid treatment and is getting progressively worse. Any info from anyone with only cns involvement and treatment ideas would be greatly appreciated. Has anyone ever heard of chemotherapy for treatment? Email address is Kohlie1@ix.netcom.com Thank you.
November 7, 1996 - Rebecca I am a 31 year old Australian woman with sarcoidosis. I was diagnosed five years ago because of recurring Iritis. I led an active normal life until about 14 months ago when the acute fatigue, shortness of breath and skin lesions set in, a mediastinoscopy followed thus confirming the presence of the mysterious sarcoidosis. I have been on Prednisone for two months and will continue for at least another four; 50 mg in the morning followed by a great surge of energy for a few hours and then an almightly drop (I'm like Jekyl and Hyde - nice and normal in the morning and an irrational, meanie in the afternoon). It is affecting my life enormously. What do the other 'Sarc' sufferers think of this, have you felt the same way? I would also like to hear from anyone regarding pregnancy and Sarcoidosis/Prednisone. Please contact me at: rebecca_slingo@acp.com.au
November 7, 1996 - Sheri I am a 25 year old female in the midst of being diagnosed with sarcoidosis. I'm a little scared, being that my open lung biopsy will happen within the next couple of weeks. If anyone has been through this or has any advise, please e-mail me at sheri@ayalon.com.
October 25, 1996 - G. Wolfe I am a 29 year old woman with active sarcoid of the lungs and lymph, mainly, with other symptoms on and off throughout the course of this illness. I was diagnosed 1.5 years ago, and have been on and off steroids (mostly on) ever since. I don't know of any TB in my family. I was diagnosed, however, shortly after starting work in a nursing home, where I am sure there were patients with active TB. Interestingly, I have a cousin who is 2 years older than me who was diagnosed a year before I was with sarcoid. We lived in the same city at the time we became ill. I wouldn't be surprised if my mother also has it, but undiagnosed. I am concerned about the effects of long-term use of the steroids. What are the alternatives? My pulmonologist seems to think steroids are the only option. I am functioning pretty well now, but want very much to have children. Where can I find information on pregnancy and predinisone or pregnancy and sarcoid? Have seen three physicians and all give different opinions. I am also very interested in starting a support group in my area. I was very excited to read the comments on this page, just to realize that I am not alone in this. If anyone has any information or would like share experience/information, please contact me at kwolf@freeway.net.
October 22, 1996 - D. Walden I am a 41 year old female and was initially diagnosed with sarcoidosis in April '96. That diagnosis was confirmed with a lung biopsy in July '96. For me, the disease started with a few years of chronic cough and a couple of rounds of what was then diagnosed as pnuemonia. I was extremely tired but continued to push myself until March of 1996 when I was awakened early one morning with severe stomach pains. Within a couple of days those pains grew to include my sacroiliac joint, and I had developed a rash on my legs. I feel very greatful that my dermatologist sent me to a rheumatologist for further testing. I have avoided steroids, but am taking arthritis medication which seems to help. My lungs have improved significantly in the last couple of months (after a real nose-dive), but the pains in my hands, feet, arms and legs are getting worse. I would like to start a support group in Kansas City and have talked with the County Medical Society about getting it off the ground. This is a disease of which little concrete medical information exists, and of which few people are aware.
October 18, 1996 - D. Wheeler The retina specialist that I saw last winter thinks that I might have sarcoidosis. I am almost completely blind in my left eye. I have a little peripheral vision left in my left eye. My right eye is 20/20 with glasses. I called my GP today to see if he would order a chest x-ray and blood tests to see if I have sarcoidosis and the receptionist told me that the doctor could not go on hearsay to order tests and would have to see me before ordering tests. I was born with VSD, spina bifida occulta,and pyloric stenosis. I suffer from anxiety attacks, gastric reflux, and a hiatal hernia. My doctor won't refer me to a cardiologost because the internist thinks the mitral valve regurgitation is normal that he saw on the echocardiogram. I think I need a new doctor. I am wondering if I have sarcoidosis and am interested in melatonin tx especially before I lose my eyesight in my right eye.
October 11, 1996 - D. Foster, Texas A&M University System I am a 38 year old healthy woman diagnosed with sarcoidosis about 4 years ago. Presented with painful, swollen ankles and discolored lumps on my shins. Biopsy confirmed sarcoidosis. I had also had bone spurs in both shoulder joints which is apparently uncommon. Was told no effective treatment and that it would probably never give me any problems, but am still very confused. When I inquire if other ailments could be related the doctors always say no and sort of ignore the sarcoidosis. I have not returned for X-rays or breathing tests b/c I felt stupid. I also have gastrointestinal problems which I'm told is IBS, but from reading other entries wonder if it could be related. Have also had hip joint pain which began with a severe burning and then just deep joint pain. Does this sound like these could be related to Sarc? Should I go back for follow up testing? It's been two years. I've never had shortness of breath, but am often fatigued which I relate to having a high stress job and being the mother of three!
October 11, 1996 - R. Gahan I have been reading through the comments page and there was one person who wondered if Sarcoidosis could be 'triggered' off by a trauma [Editor's Note: See June 30 Comment of D. Bye]. Does anyone know if this could be possible? Or if anyone is interested in my previous comments dated 08/10/96, I can be contacted via email: Rosemary_Gahan@interactive.sony.com
October 8, 1996 - R. Gahan I am 23 years old and was told I had Sarcoidosis 5 months ago. Basically, one day I had a pain in my elbow and a week later I was unable to walk or brush my own hair. I was seen by various specialists and had CT scans, X Rays, and blood tests. I was put on anti inflammatory tablets which reduced my swollen joints and enabled me to move again. I then started to have red lumps appear on my shins and ankles, a very bad cough and difficulty in breathing and I was still in pain when I walked. I was put on Pulmicort Turbohaler as well as the tablets and have regular check ups and now I am told that my lung is improving. I have an appointment coming up to see an eye specialist because my eyes are now sore and a bit itchy. I also cracked a rib and was told if I have any more fractures, I will be tested for Osteoporosis. I do also think I was so lucky with the doctors I had, they were great. My father and his brother had TB as a child so I don't know if there is a connection, but I was told there wasn't.
October 8, 1996 - M. O'Leary P.A. I am a 34 year old white male of Irish, Polish decent. I was diagnosed with "sarc" 3 years ago and it has changed my life. I would like to know more about treatment other than Prednisone, which I took 60 mg. a day for the first year. I am again experiencing shortness of breath, and tiredness and joint pain. I have not missed a day of work but cannot keep up any life outside of work without pushing myself to the limit every day.
October 5, 1996 - C. S. Harris In February of this year, I was diagnosed with sarcoidosis in my lungs after a lung biopsy. I am a 36 year old male. I do not know of any previous TB in my family history and I have never worked in an environment with chemicals or other matter. I have been on prednisone since being diagnosed. My symptoms include fatigue, shortness of breath, ankle pain. However, I am also a diabetic, and have high blood pressure. This net group has led me to bring up more questions. What are the problems patients are having with the prolonged use of Prednisone? People who have had this disease, do they generally become disabled due to the fatigue and shortness of breath? Very interested in getting more research on this subject.
October 4, 1996 - E. B.Levine I am a 52 year old female diagnosed with Sarcoidosis 2.5 years ago. I was symptomatic with shortness of breath on exertion and have been symptomatic since diagnosis. After repeat CT scans and increased ACE levels showed more infiltration and active disease, I was started on Prednizone. High doses produced a dramatic drop in the ACE but as the dose was tapered, the ACE rose and symptoms reappeared. Also side effects of the steriods were devastating. I was also started on an immuno-suppressant, Imuran, at first along with the steroids, now currently taking Imuran alone. I also recently started taking inhaled steroids. Initially I thought I felt better on the inhaled steroids, but that could be wishful thinking. Looking for others with pulmonary sarcoid with possible successful treatment.
October 3, 1996 - A. Leeson I am a 37 year old white Australian female. I was mis-diagnosed for ten years in having an auto-immune disease which the doctors have now told me I have never had. I was on chemotherapy for one year and steroids for five years, I am now steroid intolerant. Doctors have at different times mentioned Sarcoidosis to me but they have ruled it out due to only minor lung involvement. I have had granulomas, T.B type lesion on my lung, C.N.S. involvement, salivary gland, liver, spleen, and G.I. tract involvement. As Western Australia is so isolated can anyone offer me advice on what steps I should take to pursue a proper medical diagnosis regarding Sarcoidosis. Thanks.
September 30, 1996 - A. Grenier-Taylor, Founder Sarcoidosis Support Chat on AOL I am 51 and was misdiagnosed for 38 years. Just found out it was Sarcoidosis on Easter Sunday! Also, after I knew I was steriod intolerant, and intolerant to many drugs and substances. I have Sarcoid of the Central Nervous System (demylination, eyes, joints, liver, spleen (5th person to get ITP witb Sarcoid), gastrointestinal system, etc. Given 2 years to live. I am interested in anything you have on this since September 5, 1996. I am also founder of an international Sarcoidosis Support Group on America Online. We will be testing an mIRC connection soon so all can participate in live chats. I have a lot of resources on hand and lecture. I will be speaking at the Pacific Northwest Sarcoidosis Conference in Seattle on October 5, 1996. I also publish an electronic newsletter called the SARCOID BYTE each month. For more information contact me at AGTConsult@aol.com.
September 28, 1996 - R. Hathaway I am a 47 year old white American male of Irish/English ancestry and have been diagnosed with sarcoidosis since 1991. My symptoms are fairly general with respiratory and larynx paralysis being the toughest to deal with. I had a larynoplasty at the Hospital of the University of Pennsylvania (HUP) to help strengthen my voice but it deteriorates with use. Shortness of breath/wheezing,coughing (esp. in morning hours), seemingly permanent scalp lesions,decreasing vision, itchy eyes, bone spurs in joints, and ever present fatigue and a weight loss that has seemed to level off at 147 lbs. (but I'm 6', so definitely underweight, yet I eat more than most people I know). I'm in constant "stabbing/itching" pain which seems to INCREASE with the fatigue. I was told by the staff at HUP that the disease can take 15-20 years to manifest itself. I know that the disease is more prevalent in the Black community and often wonder if it might have been due to massive blood tranfusions I had due to surgeries in 73 and 75. I also had a splenectomy in 1988 due to car crash trauma. However, I do know that my maternal grandmother died of TB during a "plague" in the NE region in the early 1920's. I am definitely "disabled" yet look healthy in all aspects and appearances, but virtually speechless. A real paradox! I too am looking for that elusive cure but mostly looking for a support group. This WEB site looks pretty good. Keep me in mind if any pertinent info comes your way. Other than that I might try that AGTConsult@aol.com site on Sunday's at 8PM. Thank you.
September 24, 1996 - Lynch I am a 37 yr. old white female of Swedish, Irish, and Native American ancestry. Three years ago, I began experiencing symptoms of sarcoidosis, yet was not positively diagnosed until the Spring of 1996. My conjunctival tissue is affected, as are my lymph and salivary glands, right ear and lung. In July, I became part of a study on sarcoidosis being conducted by the National Institutes of Health in Bethesda, Maryland. There are 10 research centers across the U.S. who are participating in this study. I would encourage you to keep up your own individual search for answers and, if possible, volunteer to become a study subject.
September 23, 1996 - S. Campbell I am a 43 year old female. I work very hard, and love to be active. I cannot take the humidity though and therefore tend to stay indoors since we live in S. Florida. I was diagnosed with Sarcoidosis in 1994. I was also diagnosed with Hepatitus C in 1992. I have been very ill over the last 10 years of my life. This last year has been an improvement though after some intense therapy with NEWAYS products of Youthinol, Revenol & Liquid Mineral Solutions. But seemingly I am getting worse again. I haven't slept in a bed for 6 years (maybe only 2 times a month or so); the rest of the time is in a recliner. This is due to a feeling of breathlessness when reclining. I have never lost weight due to this though. I have however had lots of weakness & tiredness. I cannot stick with my workout routine due to easy exhaustion. Interestingly, my Grandmother (whom we never knew until my adult hood) had spent several of her younger adult years in a TB clinic. Also, my brother discovered while in the Navy that he was a carrier.
September 23, 1996 - J. Screws I am a 49 year old male who was diagnosed with Sarcoidosis in 1971. At first it was just a lesion on my chin, then later there was a bone lesion that developed on the end of my middle finder of my right hand. I began to get bronchitis and pneumonia and was diagnosed with pulmanory sarcoidosis. Altogether it was called Chronic progessive or stage sarcoidosis. I was treated with massive amounts of steroids which was mostly a roller coater of feeling good while taking the prednisone and feeling terrible while I was off of them. The disease finally seemed to decrease in intensity after about 10 or 11 years. The skin and bone lesions healed. I had an open lung biopsy about 5 years ago and they removed a calcified lymph node. They found no sarcoid lesions in the biopsy, but then diagnosed interstitial pneumonitis. They have had me on an anti leukemia drug. I no longer have problems with pneumonia, but I do have asthma and shortness of breath and wheeze. I also have some very intense pain in my feet, ankles, shoulders, neck, hands and wrists. I am presently taking 10 miligrams of prednisone. I gain weight like crazy when I take it. The pain was so intense that all I could do was lie in bed packed in ice. They finaly gave me some prozac which seems to help some. I fatigue easily and if I do not get enough rest the pain gets worse. I have just read about the melatonin treatment. Would like to hear from others with Sarcoid. By the way I was a drywall finisher for many years. As I understand, gypsum will cause a form of acute sarcoid, but mine seems to have continued even after I got away from drywall.
September 22, 1996 - GSR Your article does not give any useful information about how I can deal with this affliction. I have had an infected Right Maxillary sinus for several years and that never posed a problem. About three years ago, I suffered a severe cold and this developed into a wheezing coupled with a white frothy discharge from my lungs. My Primary Care Physician took X-Rays and told me that I had pneumonia symptoms and referred me to a pulmonologist who performed an endoscopy with the diagnosis of Sarcoids. The only medication he gave me was Prednisone and the more I took the sicker I felt and had to take antibiotics. I stopped taking all medication and then felt better. About every six months, I have had to take Prednisone because of shortness of breath. Every six months I have taken a blood test to check for two speciifc parameters, SED rate and Angiotension Converting Enzyme. The specialist uses this as an indication for activity of the disease. I have found no specific practical reseach article, nor any monitoring centers. If you know of any please let me know (asthma, cancer, other diseases have them).
September 21, 1996 - D. Valentine I am 58 years old and was diagnosed with sarcoidosis of the lungs (through biopsy) 21 years ago. I have had gradual shortening of breath over the years. The last 3 years, breath shortness, severe wheezing, an overall deterioration of appearance and an inability to hold my weight led my doctor to put me on Prednizone. The last two symptoms have improved greatly and I am not feeling any major side effects of Prednizone. The shortness of breath is still a problem. The wheezing is greatly improved, but still present. My familial history includes an exposure to T-B, but we're not sure who had it--probably my mother. I was living in Montreal working in a textile mill when the disease was diagnosed. Hope this information can prove useful to someone.
September 7, 1996 - A. G-Taylor As a founder of a large and growing Sarcoidosis Support Group who's objective is to provide up-to-date research sites and information to our members, I would like to request a full article. This synopsis is much too brief to be of value to the Sarcoidosis community. Our support group meets every Sunday at 8pm ET in the IMH Conference Hall on America Online. We publish a monthly newsletter called the SARCOID BYTE. For further information, please contact me at AGTConsult@aol.com.
September 5, 1996 - J. Holman I am a 42 year old male who was diagnosed with Sarcoidosis three years ago. Until three years ago I had always had excellant health. My Pulmonologist put me on Prednizone and told that it was the only effective treatment. This seems to have been effective, but now I am fighting the side effects of the Prednizone. I would very much like to learn more about alternative treatments. My doctor told me that Prednizone was the only effective treatment available. I found the mention of Turberculosis Mycrobacteria interesting as a possible link. My older sister was treated for T.B. when I was seven. I have always tested positive as a carrier. I appreciate the comments of other readers. I thought I was the only one who felt fatigue all the time. My doctor told me it was due to lack of activity. I would like any information on this disease.
September 5, 1996 - R. L. Ruhmann I have been diagosed with Sarcoidosis and am enthused about the possible new option of treatment you described. I have refused prednisone, and am currently trying the 21 mg per day melatonin program. I also take an immune system booster thru an IV once a week. It seems like the eosinaphils (sp) form of white cell goes crazy. The norm is 1 to 4% and mine is at 24%. Any thoughts on this being a virus driven disease? I am a 53 year old male professional. I will be happy to share any of my findings relative to this disease and certainly welcome your thoughts.
September 2, 1996 - M. L. Smith I have been diagnosed with Sarcoidosis for 15 years. Until recently, it was "quiet". Last fall I had severe joint pain and fatigue. After numerous tests, it was concluded that my sarcoidosis was active. I look forward to learning more from this page. It will also provide me with a support system that is not available in my area and state.
August 21, 1996 - J. Mortham Where in the US/World do they do research on sarcoidosis? Where can I find a specialist for treatment? After years of dealing with knowledable but not expert caregivers, I am seeking someone I have enough confidence in to try some of these new treatments. I'd be willing to go anywhere for this luxury. Also, has any research been done on the genetic probability of passing it on to our children? I have a daughter with very familiar early complaints I recognize but can't get a confident response from a pediatric doctor nor cooperation in further diagnosis from our insurance (HMO) provider. I have had S. for 30 years with many twists and have been on prednizone for 13 years, the only thing to ever work, and now I am dealing with the problems years of prednizone created. I want to get off the drug and have asked 5 different specialists and gotten 5 different plans, all very different. I need the opinion of someone who knows and works a lot with the disease. Where do I find such a person?
August 12, 1996 - L. Woltz. My mother was diagnosed with sarcoidosis in 1981 (it was a small spot on her skin). She was diagnosed with lymphoma in 1971, and was in complete remission by 1980 (after years of taking Leukeran). She has had cortisone shots, taken various steroids, methotrexate, medications for tuberculosis and malaria to name a few. She had to have some salivary glands removed also. She now has "sarcoids" all over her skin (80% of her body), and they are slowly moving internally (mouth & lungs). Her doctor does not want to give her more methotrexate (which helped for about a year) or steroids, and she doesn't have many options now. Any information about new treatments or testing being done would be greatly appreciated. She would be willing to try anything that won't kill her but will stop the sarcoids at this point. Thanks.
July 26, 1996 - P. Gunter. My husband has just this week been diagnosed with sarcoidosis. His illness is affecting his joints, specifically his knees, ankles and hips. He also has lymph nodes inflammed around his lungs, in his neck and under his arm. Our pulmonologist has basically told us to contact a rheumatologist for treatment. He doesn't want to put him on anything other than arthritis medicine. We don't know what to expect with this disease and would like some feedback on a prognosis.
July 21, 1996 - B. Kirouac. I would like more information. Sarcoid has affected my lungs, skin, and eyes. I am also tired of being tired. Any and all communication would be appreciated. Thanks.
July 21, 1996 - H. Degier. I would like some additional information on how sarcoidosis affects the functioning of the heart and any possible treatment available.
July 20, 1996 - B. Kirouac. I would also like more information on sarcoid. I was diagnosed after having a lesion removed from my chest in 1995. I have since had my tear ducts fused due to chronic dry eye caused by sarcoid scarring of my tear glands and I am currently on my third month of prednisone which is "killing" my stomach. I would appreciate some more information and contact with others going through similar situation.
July 6, 1996 - J. Towry. I was diagnosed with sarcoidosis in April 1993, after chest x-rays showed abnormalities in lungs. The disease has slowly progressed over the past three years. In November 1995, sarcoidosis diagnosed in skin after biopsy performed. I am interested in any information regarding treatment other than cortosteroids. As of yet, my pulmonologist has not begun treatment, as he says I am not a good candidate for positive results. I can honestly say that I am not eager to begin cortosteroid therapy. If ever you learn of a study being performed in the Eastern United States, I would appreciate information.
July 1, 1996 - K. Johnson. I have been diagnosed with Sarcoidosis, (found during a biopsy, I was first diagnosed with Lymphoma) and am looking for current information. I have worked in the fiberglass industry for 17 years and know of 3 other people with this disease that have also worked in this industry. I am interested in finding out the occupations and exposure to chemicals of other Sarcoidosis patients.
June 30, 1996 - D. Bye. I was diagnosed with sarcoidosis after being involved in a motor vehicle accident in which my lung was punctured. Immeditaly afterward I began having shortness of breath and other symptoms of sarcoid. I do not believe that I have this illnes but my doctors insist that I do. If anyone has any information on whether this disease can be triggered by a trauma please reply. Thank You.
June 28, 1996 - Glooe. Unsure of study purpose, would like additional studies/information on the effect sarcoidosis has on vision (e.g., tear duct gland).
June 24, 1996 - C. Lewis. This study sounds biased. I would like to know if there have been any similar studies done in the U.S. I have been diagnosed with sarcoidosis and would like to learn as much about it as I can.