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(a) If you don’t trust your doctors knowledge about your disease and his/her competence to prescribe a suitable treatment, you must try to find another doctor that you can trust. It is essential that patients rely on their doctor and that doctors can be sure that patients are following the prescribed treatment exactly as recommended during the various states of the disease.
(d) If you have been on steroid therapy for several weeks, NEVER discontinue the treatment by an abrupt withdrawal and NEVER without the supervision of an experienced doctor. If you are not following this rule, you are putting yourself into a very risky situation, where for instance an usually harmless infection can be direct life threatening with a fatal outcome. A withdrawal of steroids, like Prednisone, should always be done by tapering down the size of the dose over a sufficient period of time. This time can be from a few weeks up to one year or longer, depending on the amount of administrated steroids and for how long a time the steroids have been administrated. When steroids have been taken for a longer time, say several weeks, the body’s own cortisone production will be stopped and the adrenal glands, that normally produce this hormone, will fall into sleep mode. With an abrupt withdrawal of administered steroids, the adrenal glands will not be able to produce cortisone and inject this to the bloodstream to prepare the body to handle various stress situations, for instance infections, wounds, surgery or other physical or mental traumas. Any of these situations can then eventually turn out to have a fatal outcome. By tapering down the dosage the body's system, involved in the cortisone production and release, will get a chance to wake up and hopefully be brought back to its normal function.
From what I have said above, it should be clear that it is extremely important that no one should walk around with a sarcoidosis disease without having the disease regularly and carefully controlled by an experienced physician, no matter if any medication is administrated or not. The same is equally important for patients whose disease has disappeared, because relapses are very common.
In some letters, the writers are mentioning treatment of sarcoidosis with a medicine called Methotrexate. To my knowledge, Methotrexate is a substance that is used during treatment of some cancer types. If this substance has ever have been tried for sarcoidosis treatment, I am quite sure this has been done in cases where Prednisone and other drugs have failed. Anyhow, Methotrexate should be considered as a far more hazardous substance than Prednisone and far more severe side effects should be expected from treatment with that drug. I can not even imagine a situation where a doctor would prescribe Methotrexate as a treatment, without having tried Prednisone and every other possible medication with a negative result and even then I think the patient should be in a very severe incapacitating condition if a treatment with Methotrexate is considered at all.
It is however very important that the patient is informed about all possible side effects of any treatment, no matter what drug or drugs are used in the treatment and that the doctors are readjusting the steroid dose and/or prescribing complementary medicines and/or readjusting the patient's diet and nutrition to control any intolerable side effects caused by the treatment. Now, there is for sure a few occasions where sarcoidosis patients are not responding to steroid treatment or, as a side effect, are developing uncontrollable diabetes. If the patient is not responding to steroid treatment, then of course the steroids should be withdrawn. If for instance diabetes will pop up as a side effect, then the doctor first should try to reduce the dosage or, as a last resort, discontinue the administration of the drug. Anyhow, if an experienced doctor finds it essential to try steroid treatment for your sarcoidosis and such treatment is showing up to give the expected and wanted result, (this is to my knowledge the most common outcome), and any eventual serious side effect can be controlled by supplemental medication or dietary changes, then you had better follow your doctors recommendations to the point.
Finally, for this time, I strongly recommend any patient diagnosed with sarcoidosis or any other chronic disease to try to make the disease a friend that needs careful attention from both the patient and the managing doctors.
I will be back on this page, I hope within a few weeks, with a very speculative discussion about some ideas I have developed during the years about what could be some causing factors in the development of sarcoidosis. Until then, take care of you all!
October 22, 1997 - S. Wright I am a 46 year old black female who was diagnosed with Sarcodosis in 1992 after having a lump on my neck removed and biopsied. At the time, I also had several lumps on my head. Once I was diagnosed, my doctor told me that the primary treatment for Sarcoid was steroids. I hesitated. I went to the medical library and read about the disease and the side effects for steroids. The thing that stood out in my mind was the fact that in some people steroids can bring on diabetes. Diabetes runs rampant in my family, the older members having been ravaged by it. My mother suffered and died from diabetic complications. After talking with my doctor who was non-committal about the effectiveness of steroids, I decided that I would forego steroidal therapy. To date, I have experienced the following symptoms for which I am not altogether sure are related to Sarcoid. Some could be due to other conditions, or maybe even the passage of time. The lumps on my head disappeared the same year as the diagnosis. I have a pinkish "bruise" above my right eyebrow and one on my shoulder. I figure those are related to the Sarcoid. I had sinus surgery 1 1/2 years ago. The doctor who did the surgery said my sinus problems were not related to the Sarcoid, and he found no indication of Sarcoid in the tests done on my sinuses. My biggest complaint this year has been the hoarseness in my voice. I cannot tell if this is related to the Sarcoid, because it seems to be seasonal, and since the surgery, I have contracted allergies for the first time in my life. It's fall now and my voice is normal except maybe first thing in morning. I frequently have swollen ankles. But is it in my mind or could this be due to excessive consumption of caffeine? It seems when I lay off the high octane Coca Cola, the swelling subsides. Sometimes my vision in one eye is less than perfect. But then I have worn glasses for reading or close work since I was a child. Putting on my glasses does help. I do not need them all the time. I guess I am saying all this to say, maybe I am over this mysterious disease? Could it be? I bought a treadmill several months ago, and people tell me I am looking better and seem more energetic. I certainly feel more energetic. It wasn't always this way. I remember dragging around to do just about anything and experiencing shortness of breath. Now I get by on six hours sleep and feel ready for the day. I also feel that not taking the steroids made a difference in my life. I was not comfortable with all the listed side effects and decided at that time that the sarcoid was less of a threat. I wonder if this decision may explain why I generally feel good. Or could there be more Sarcoid symptoms waiting in the wings? Oh yeah, I try to eat properly, again because I want to stave off diabetes as long as possible. Oh did I mention that I am one of those people who really doesn't like going to the doctor? And my basic health philosophy is "quality over longevity." I would appreciate any comments. Especially from those of you who felt just fine after the diagnosis. I'd like to know how you feel today. Any change?
October 18, 1997 - T. Falkenberg Three months ago I started acupuncture and when the Chinese doctor felt my pulse, he told me; your spleen, lungs and liver have problems. Of course he knew because I had told him; except for the liver problems, I had no liver problems. I consulted a doctor at the hospital and after an ultrasound, an enlarged liver was discovered. Weird to feel liver problems through my pulse. This is what has happened since. I am not cured. But my tiredness is reduced by 40-50%. My parents used to drive me to acupuncture. Now I go by bus or by bike to see my friends and the Chinese doctor. I live in Copenhagen. I can go shopping every day, do not cough and have no low-grade fewer. Only once a week I get the tiredness so I have to stay in bed. Acupuncture can not cure the disease, but it sure can get your body in balance. So that the body can cure itself. The doctors wanted me to start on prednisone again, but now they have changed their minds because of the way I feel. In 3 months time I can start working again without prednisone. Acupuncture is now a part of my life, and the impact of sarcoidosis is getting smaller. I believe acupuncture can reduce everyone's tiredness. Here are the points my Chinese doctor uses. Liverpoints (S36 SP6), (SP9 SP4 S37), (B20 B21), Spleenpoint (B20), Kidney and adrenal Gland (S median + K10 or K7), Liver + Kidney + Spleen balance (K7 posi+), (SI3 Nega-), (G41 Nega-), (LI4 Nega-), (LI2 Nega-), Skin problems (LI4 LI11 LIV3 G38 S36), (S36 S44 SP6 SP8 SP10).
October 11, 1997 - J. D. Kattar I am a 42 year old white male who has suffered from sarcoidosis for the past 3 years. After some period of stabilization, the disease rapidly started to get worse about a year ago. I suffered from extreme shortness of breath, fatigue, and weight loss. I experimented with herbal remedies and accupuncture, to no avail. Finally, I started prednisone treatments at 40 mg/day. The effects were almost immediate. After 3 months of prednisone, I have tapered down to 15 mg/day, and feel well. My pulmonary function tests have improved only modestly and I am still not perfectly well, but at least I am able to lead a normal life. For the most part, I feel normal. Side effects have been few, limited to very slight and occasional shaking in the hands and some upset stomach. I realize that prednisone is a powerful drug that can have long term injurious effects, but for me it has been the right treatment. After much research into this disease, I am convinced that there is a wide range of response to any therapy, depending on each individual's body chemistry and circumstances. I have read so many negative things about prednisone, but I would urge all who suffer from this disease to not reject it out of hand. Experiment with different treatments to find the one that is right for you. To all of you with sarcoid: don't give up hope, and may God bless you all.
October 8, 1997 - K. Morris I was diagnosed with Sarcoidosis 4 years ago when doctors X-rayed my lungs because of a bout of pneumonia. The lymph nodes in my lungs were swollen and my ankles were swollen. My doctor decided not to put me on steriods because of the side affects. We treated the swollen ankles with Lodine. The symptoms never worsened, in fact, they seemed to disappear. However, I didn't continue with medical treatment, since the lymph nodes seemed to go down, but not disappear. However, about 2 months ago, I started getting extremely tired after any amount of exercise. I could barely drag myself out of bed in the morning. A month ago, when I started coughing, I knew it was back. I'm not sure if it ever went away or not, but I feel worse than I did then. I can barely breath anymore, so the doctor has given me an albutarol inhaler. I do not want to try steroids, but I have been reading some of the comments about methotrexate. What is this drug? What is it used for and what symptoms does it treat? Does it work on all types of Sarcoids or just neurological? My sarcoidosis is primarily pulmonary, but I have had some joint pain and the overwhelming tiredness is wearing me down. I would welcome any help I can with trying to control this, since it seems it will never go away. Thanks.
October 1, 1997 - A. DeLong I am a surviving son of a victim of Sarcoidosis. Yes, I said victim. About 5 years ago, my dad was diagnosed with sarcoid and was treated with steroids. I have no idea what kind, and it didn't seem to help him. As his condition continued to deteriorate, he was sent to Johns Hopkins Hospital for another lung biopsy. It turns out his sarcoidosis had changed into pulminary fibrosis and within 3 months he was dead. Two years before my dad was diagnosed, my friends mom who lived next door to us was diagnosed with sarcoidosis and just 6 months ago, my friend who is my age was diagnosed with it. I am afraid to ask my doctor to check me, for fear of finding out the possibility of me getting it. Thank you for this page, I liked reading that I or I should say my dad, is and was not one of two people to have this rare disease. By the way, we are all caucasion. I understand this is a predominately African American disease.
September 26, 1997 - C. M. Powell I am a 34 year old, African American female with larynx sarcoidosis. I was first misdiagnosed in July 1994 as having cancer, than later diagnosed with sarcoidosis. I was put on prednisone for six months. Although my voice cleared up, the predisones made me feel sick the whole six months. Last year my voice got hoarse, but was untreated due to pregnancy. Now, I'm waiting to see if laser surgery can be done, also my eyes were watery constantly and I found out two days ago it's sarcoidosis. If anyone can help me with any information on larynx sarcoidosis or an alternative treatment besides predisone, I would highly appreciate it.
September 23, 1997 - M. Caillouet The National Heart, Lung and Blood Institute is a part of the National Institute of Health and a division of the U.S. Department of Health and Human Services. This department is doing a study to determine the cause of sarcoidosis. Anyone who has sarcoidosis or thinks they have this disease needs to be very aggressive about following up on ways they don't feel well because the disease can take many forms. For more information about this disease the address is: The National Heart, Lung and Blood Institute, Division of Lung Diseases, 2 Rockledge Center, 6701 Rockledge Dr., MSC 7952, Suite 10018, Bethesda, Md. 20892-7952. They can provide information on scientists and doctors specializing in Sarcoidosis. They also provide a pamphlet listing other resources and describe the disease. Don't be afraid to be your own advocate and try to find a pulmonary specialist who can help you and report to him or her any changes in your physical state of any kind including even things like diarrhea that won't go away. Don't lose hope.
September 21, 1997 - G. Capps I am a 44 year old female recently diagnosed with sarcoid. I was immediately put on 40 mg of prednisone. After a month on prednisone, I am having trouble with numbness in both hands, weakness down both legs, my axillary lymph nodes are very swollen. I have recently been diagnosed with diabetes, so with the prednisone, I havn't been able to get my sugar below 300 no matter what I do or don't eat. I am having trouble with my vocal cords, choking, abnormal liver readings. I started coughing a week ago and havn't been able to get it stopped either. My primary care physician doesn't want to treat me because I am on 40 mg prednisone. I live in North Carolina near the the capital, Raleigh. Does anyone out there know of any doctor that deals with sarcoid? If so, please E mail me. Any information would be appreciated.
September 11, 1997 - Gregory I am desperately looking for some "cure" or more information on this disease. My niece, Kimberly has been treated with Prednisone for some time and now she's in Intensive Care fighting for her life. She had fluid retention in her brain due to a blood clot. Now, the doctors are painting a fatal picture. I thought this was a "non-fatal" disease, in terms of "quality of life" and "death". Is there anyone in the world who really knows about this that I can call and talk to?
September 9, 1997 - Clay I was diagnosed with sarcoidoisis in 1994 at MD Anderson Hospital in Houston, Texas. Since then the illness has affected my eyes, caused lesions on my nose, and severe bone pain in my arms, ribs, and upper back. I have received steroid therapy. I have had bone scans, MRI, and CAT scans. To make this short I have been through every test and drug. Right now my bone pain is getting a lot worse and I need help. Pain killers help but the doctor makes a big issue out of that instead of the pain itself. I go to UT at Tyler, Texas. Can anyone relate to my problem? If so please give me some advice; I am sick of the pain. The constant coughing and shortness of breath is bad enough. I use a nebulizer, inhalers, fosamax, vitamin D, calcium and on and off prednisone, also Z-pac antibotic for infections I get pretty often.
September 5, 1997 - Pete Hi, everybody at Information Ventures. First of all, I would like to express my thanks to the editor who corrected and re-arranged my letter of September 3 (see below). I am very much impressed with the professional work he or she did to make my letter more easy to read and perhaps more interesting to other readers. Thank you! As the editor correctly noticed, one of my web addresses is wrong. The correct web address is presented here: (Webmaster's Note: the website is no longer available.) Association for the Study of Scleroderma and Fibrosing Diseases. Again thanks a lot for your great work and attention.
September 3, 1997 - Pete
Hi, my name is Pete Olsson, a 56 year old white male, born and living in Sweden. I found this great web page a few days ago. I think this kind of information source and place for experience exchange, can be of great importance for us sarcoidosis victims. During the time I have used to read the dozens of letters on this page, my mode has shifted thru all possible states.
.....My story begins in 1964, (33 years ago), after a routine health check up, that at the time was offered free for all adult citizens in my home town. My wife and I went together to a big ambulating truck that was moving around in the community for some time. The truck was equipped with all the necessary equipment, such as X-ray machines and of course nurses and doctors. Chest X-ray pictures were taken on both of us and, if I remember correctly, also blood samples. We also had to fill in a form with questions about our own opinions of our health status. After that, we went home and forgot the whole thing. A few weeks later, a nurse from the hospital phoned me late in the afternoon and asked me if I had influenza at the time I was X-rayed in the truck. I answered that I could not remember if I had or not. Then, she told me that the pulmonary specialist, who inspected the X-ray picture, found some evidence of tissue abnormality in my lungs and the doctor decided to call me in to the hospital for investigation. During the phone call I did not get any name of any possible cause to the doctors findings. A few days later, I went to the hospital to see the pulmonary specialist who found the abnormalities on the X-ray. He told me that his preliminary diagnosis was sarcoidosis and that he needed to do some more tests before he could confirm the diagnosis. He then used more than a hour to tell me all that was known about the disease at that time and he assured me that this disease in most cases was extremely benign and in many cases spontaneously disappeared by self healing. He also pointed out that I should not be upset and scared by the diagnosis and should not change anything in my way of living. As I think most of you know, this is not as easily done as it is said. However, I immediately decided to at least give it a try. I think I was very lucky that I, from the very start, got a very good impression of the professor's great experience with the disease and his straight and open description of the possible varying prognoses for the disease. He also told me that there was no known cause to the disease but some research was going on. During the following week, I was subjected to a new X-ray and several other tests including blood samples and finally, I was informed that the diagnosis of sarcoidosis was confirmed. The professor then informed me that he had put me on a list for regular check-ups every 6 months, to follow-up the course of the disease. He also informed me that, should the disease become intolerable, steroid treatment would be started in order to arrest the progress. At that time, I had gotten used to the diagnosis and put all the initial frustration behind and started to do my own information "research" on the disease.
.....During the following three years, I was called in every six months for new X-rays and blood tests. Each time the result showed no changes, compared to the nearest previous result, or a small but noticeable progress/movement in my left lung, but no progress that called for any steroid treatment. During the following years, I moved between two areas in Sweden to different positions in the company I was working for and therefore, I was doing the check-ups on my sarcoidosis at several different hospitals, all the time with doctors having a wide experience in the disease. During one of these check-ups, the blood samples showed a significant elevated calcium level, often seen as a complication to long standing sarcoidosis and believed to be a result of an augmented calcium absorption, due to an increased sensitivity to vitamin D. The doctor I had at the time then informed me that the increase in the serum calcium required treatment with Prednisolone because of the risk for kidney stones and possible kidney damage. I was hospitalized for about four weeks, (this was 1969) and put on Prednisolone, 60 mg taken daily in two 30 mg doses. I also was instructed to avoid food containing large amounts of vitamin D and to avoid subjecting my body to direct sunlight. (It is a well known and documented fact that vitamin D and cortisone have a conflicting relationship). No big deal, I have never in my adult life been a milk lover so I have been following the doctor's instructions since then. During the four weeks at the hospital, regular blood samples were taken and during the fourth week a new X-ray was taken. The blood samples and the X-ray showed that I responded very well to the steroid treatment and I remember that I felt very strong and healthy when I left the hospital.
.....Following my doctors instructions during the following weeks, I tapered down the Prednisolone dose to a daily maintenance dose of 5 mg, that I was on until 1977 when I moved myself and my family to another town in the southern part of Sweden and was put on a follow-up list at the hospital in that area. When I went to the hospitals for a check-up, I for some reason went into the hands of very young doctors, who were very reluctant to use steroid therapy, or at least did not have any wide experience with such. I had to force my last doctor to renew my Prednisolon prescription. After that occasion, when I only had a few pills left, I did one of the two most stupid mistakes I have ever done. I decided to step down the steroid dose and to finally, when I ran out of pills, stop taking it. Some months later, I moved together with my wife and children to a new town and there I did the second stupid mistake. I did not make any contact with the hospital in that town, (a hospital at which I some years earlier did my follow-ups).
.....During the following months, I had several, what I belived, colds and finally, I contacted the hospital to complain about this and informed the doctor about my previous contacts with the hospital. The doctor immediately asked a nurse to find my prior health journal and after a few minutes the nurse stepped in with the file. After a few seconds of reading the papers in the file, the doctor ordered blood samples and an X-ray. The new X-ray showed massive sarcoid progress in both lungs and the doctor decided to hospitalize me. During the first days at the hospital, I was again put on Prednisolone and several repeated blood samples were taken. The blood samples showed abnormal elevated levels of some enzymes, indicating that my liver and possibly spleen were affected by the sarcoidosis. I was then subjected to a computer scanning of my liver, and tissue samples were taken from the liver and spleen by fine needle biopsy and a tissue sample was taken from a small skin lesion on my right knee. All these samples showed sarcoidosis involvement. During the rest of the month that I stayed at the hospital, a new X-ray and repeated blood samples showed excellent response to the steroid therapy and I finally left the hospital in what I felt was a very good condition. As before, the Prednisolone dose slowly was tapered down, this time to 7.5 mg daily. I also got instructions from the doctor that I should increase the Prednisolone dose to 20 mg daily on occasions when I got influenza and then slowly decrease the dose to 7.5 mg after recovery. He also told me to contact the hospital in case a cold or influenza did not cease within seven to ten days. Since then, I have used Prednisolone, with a basic dose of 7.5 mg daily, with a higher dose during infectious periods, as the doctors instructed me.
.....In 1983, my family and I moved back to an area we previously had been living in (and where I am still living). I contacted the hospital to be put back on the previous follow-up list. Since 1983, the regular check-ups have shown none or only small progress in the disease. All serum values are at normal levels and I have, for my age, perfect blood pressure levels. However, I have developed some fibrosis in my lungs that has reduced my lung capacity to about 50%. During the period 1995 to 1997, I was hospitalized three times for severe pneumonias, from which I have not physically recovered. I am now also using an inhaler (Pulmicort). The inhaler decreases the dyspnea I nowadays experience, even at moderate exercise. Except for the dyspnea and fatigue, I feel good and I am still very happy with my life. I have until now been very active, mostly in my profession. I am an electronic engineer and I develop and write PC-programs.
.....From a great number of letters on this page, I find an overwhelming reluctance to steroid treatment and that makes me feel both angry and sad. From my own experience with 30 years of Prednisolone treatment, I am absolutely convinced the doctors did the right thing when they put me on Prednisolone in 1969. I am however, aware that there are many doctors out there who are reluctant to use steroid treatments and I have found it peculiar that these doctors usually are very young, having none or very little experience in steroid treatment. As many of you know, treatment with Prednisone or other corticosteroids is purely palliative and NOT curative. When a doctor, having experience in steroid treatment and even better, also has a great interest in managing the disease, decides to prescribe Prednisone, he has carefully weighed the possible and wanted benefits against the risk of unwanted side effects. He has also evaluated all possible contraindications that would prohibit use of steroids in the treatment. In short, when your doctor prescribes Prednisone, he is doing that with the aim to put the disease into remission, or at least to arrest the progress of the disease and you will do better following his instructions.
.....During this treatment, initially at higher daily doses, the doctor or doctors will be closely monitoring the result of the treatment, by taking regular blood samples, X-rays, etc. and watching for any serious intolerable complications due to the treatment. If your body is not responding to the treatment, or should any serious complication appear, the doctor will stop the steroid administration. In most cases, from what I have learned, the steroid treatment will successfully suppress the active inflammatory reaction when tissue involvement, (by its site, type or degree) interferes with the following abnormal states, caused by the sarcoidosis: active ocular disease, progressive or persistent pulmonary involvement, significant liver disease, cardiac arrhytmias, CNS involvement and hypercalcemia. The aim of treatment is always to prevent progressive and irreversible fibrosis and tissue damage and at present there is no other known effective drug than corticosteroids, however some research is being done in using Melatonin as a treatment. (I will come back to this below).
.....As you may know, pulmonary fibrosis means that the involved lung tissue will be permanently damaged and put into a non-functioning state and thus reduce lung capacity. Even more, the affected lung areas will stiffen and make the lung less elastic and therefore obstruct the ventilation capacity of the affected lung (that is the state I am facing today). The aim of steroid treatment is usually not complete palliation, but to control the progress of the disease with a minimum of unwanted side effects. The principle of the treatment should be the shortest possible course together with the lowest feasible steroid dose that will control the manifestations of the disease.
.....In my case the course seems to be that I have to be on a maintenance dose for the rest of my life. So far during my 30 years of experience with Prednisolone treatment, I have developed no serious side effects other than a slight deterioration of wound healing (it takes a little longer for wounds and scratches to heal). During my searches on the Internet for new information regarding sarcoidosis, I found two interesting reports having the titles:
- "Use of Melatonin in the Treatment of Sarcoidosis", issued by Matteo L. Cagnoni, Dept of Dermatology University of Siena, ITALY. This report describes two cases of sarcoidosis patients not responding at all to steroid treatment. Instead the two patients were treated with Melatonin with very good results. I strongly recomend getting hold of this report and showing it to your doctor. It can be obtained from:
- "Treatment of the Articular Manifestations of Rheumatoid Arthritis
with Melatonin (N-acetil-5-methoxitriptamine)", issued by the Association for the study of Scleroma and Fibrosing Diseases, c/o Instituto di Clinica Medica IV Viale Pieraccini, 18
50139 FIRENZE ITALY
E-mail: assmaf@peggy.mt.unifi.it
.....Finally, I hope that all of you, like me, are in the good hands of an experienced doctor that you can trust. I also recommend you to not be scared by your diagnosis, because with the right professional management and treatment you are likely to live a normal life and possibly the disease will disappear by self healing after a while. I would be very happy to receive E-mail from any one of you.
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