Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Lowelle, Aisha is VERY SICK right now-- and has just started another type of TB protocol drug. She may not be able to answer your post right now. As far as the Vitamin D info, I will include an article that goes over the stats from one of our MD's that is familar with Vit D and sarcoidosis. Believe me, there isn't anything they haven't run in the way of tests on Aisha. And because of her excellant research on NS, which was proofed and inspected by several MD's- all of us have a resource that we can take in hand to our MD's. I hope you've looked at the NS site: http://www.elderwyn.com/neurosarcoidosis/. I am glad that this antibiotic works for you. I know that several years ago, my MD tried me on it, just in case this had a secondary infection component. All it did for me was to give me such a systemic yeast infection that we had to discontinue it and treat me for the systemic yeast. It took months, literally, to get my body back to normal. When I say systemic, I mean vaginal yeast, rectal, oral, every lymphnode, sweat gland, under my breasts, behind my knees-- not a good thing at all. As for me, I've had pulm sarc since 1992 or so, it was also affecting my eyes. After 3 1/2 years of prednisone, I went into remission. Four years ago it came back, again starting with my eyes, and my lungs, and had gone systemic to muscle, ligaments, joints, bone, and brain. My pulmonologist at the time, insisted on prednisone again, and all we did was feed the granulomas- and make me nuts. Finally, I got to a pulm that put me on Imuran, and referred me to specialists in Sacramento. I now have the head of the Pulmonary Dept, the Neurology, and the Rheumitology/Immunology depts at UC Medical School working on me. They have checked everything from my Vit D and Calcium levels, (unfortunately, I don't remember the results) and they fell into the normal range. My PFT's, neuropsych testing, EEG's, EKG's, ACE, CRP and many, many other tests confirmed that there is muscle, nerve, brain damage. The ACE and CRP showed extreme systemic inflammation. Several of the antibody titers were also out of range, but did not confirm Lymes or MS. Lowelle, all of us have been put thru the medical ringer here, some of us with a dx some still waiting on one. Most of us grew up on antibiotics for some form of chronic something. I do know that when I was initially dx with pulm sarc, my pulm put me on two antibiotics, so that both bacterial and staph or whatever could be killed if that was the cause. I probably had a low grade infection, so I got a little better for a while, but it still didn't improve my PFT's, so it was pred over a long period of time. I'm sure that some of the people here will ask their MD's about the Minocycline therapy from what you've posted. I wish that antibiotic therapy would work for me-- it hasn't been the answer in my case. One of the things we try very hard to do with this website is to share info that is showing improvement in patients with serious NS. We have a couple of MD's, several nurses, and a few of us that have been researching this disease for a long time. The info we share comes directly from the encounters with our MD's. It also comes from spending thousands of hours behind this screen. Every one of us wants to be healthy. What I'd suggest to you is that you kick back, read some of the archived posts- there is a tremendous wealth of info there, and relax. I know you're excited about what has worked for you. What we won't tolerate is online arguments. Sincerely, Tracie NS MODERATOR Ask the Doctor Our online physician answers questions about sarcoidosis Preface: We were contacted by many patients that there was a method of eliminating flare-ups of sarcoidosis by simply wearing sunglasses and avoiding sunlight, even to wear special clothes to cover up and making our homes as dark as possible to avoid exposure. They were told to avoid all foods with vitamin D and calcium as this would deter flare-ups of sarcoidosis.We called upon Dr. Norman Soskel to help us in explaining the correlation of vitamin D, exposure to sunlight and ingestion of calcium and how it affects patients with sarcoidosis. He was generous in writing an article exclusively for this newsletter and explained it in layman’s terms. It appears as though for a select few there may be a link, but it is far too early to come to any drastic conclusions. Dr. Norman Soskel’s best advice for these few patients is in addition to medication, to refrain from overindulgence in exposure to sunlight and ingestion of calcium and vitamin D, but indicates that total abstinence is usually not required or recommended. Of course he recommends talking to your health care provider as a first step.Dr. Norman Soskel runs a non-profit organization and an information rich website at: http://www.sarcoidcenter.com.that helps give credible information to sarcoidosis patients and caregivers.The Significance of Calcium and Vitamin D in SarcoidosisNorman T. Soskel, MD, FACP, FCCPSarcoidosis CenterMemphis, TennesseeFebruary 4, 2003Calcium metabolism in patients with sarcoidosis has been studied since the first intriguing reports by Harrell, et al in 1939 demonstrated elevated serum levels of calcium (hypercalcemia) in those patients. Even more common is hypercalciuria (elevated calcium in the urine). Exposure to sunlight is believed to contribute to this by way of vitamin D metabolism and is counteracted with therapy by avoiding sunlight as well as corticosteroid ingestion. Newer data suggests immunological functions of vitamin D with respect to granuloma formation. The exact significance of these will be discussed in this communication. A detailed scientific discussion is beyond the scope and intent of this article. The major purpose is to discuss in terms most people can appreciate, the way in which calcium is handled by the body in normal individuals and in people with sarcoidosis, what health concerns result and how and when they are treated.A certain amount of scientific/medical jargon is required but this will be kept to a minimum.Calcium and Vitamin D Metabolism Calcium is taken in orally and is absorbed in the gastrointestinal tract. It is excreted through the kidneys into the urine. Additional calcium can be reclaimed from the bones. This process is regulated by vitamin D and parathyroid hormone, among other factors. Vitamin D enhances absorption in the GI tract but not excretion in the kidneys. The latter is determined by calcium fluxes from the gut and bone. Vitamin D is produced in the skin as a result of exposure to ultraviolet B rays from sunlight in the form of a precursor that is inactive. It spontaneously converts to vitamin D3 which is initially inert. In order to become biologically active it must undergo addition of two chemicals called hydroxyl groups. The first is attached in the liver forming 25 hydroxyvitamin D3. The second is added in the kidney to form 1,25 dihydroxy-vitamin D3 or 1,25(OH)2-D3 which is the active form of the hormone, sometimes referred to as calcitriol. A major finding was that the macrophages (cells) can convert the inactive to the active form of vitamin D in the granulomas of sarcoidosis.Hypercalcemia and Hypercalciuria in Sarcoidosis While it is true that hypercalciuria is three times more common than hypercalcemia in sarcoidosis, several important discoveries aid our understanding of the uniqueness of the findings in that disease. The site of overproduction of calcitriol is extrarenal. Alveolar macrophages (cells in the lungs) make calcitriol in sarcoidosis, specifically the macrophages in the granulomas themselves. Another important observation is the fact that hypercalcemia can occur in other granulomatous diseases. Hypercalciuria may occur without hypercalcemia, but the reverse is not true; that is, hypercalcemia is always associated with hypercalciuria. Hypercalcemia, if extreme, can cause severe health problems, however, this rarely occurs even in the worst cases of sarcoidosis. Development of kidney stones can occur, especially with hypercalciuria, and, if left unchecked, could lead to kidney damage and even kidney failure. But, again, this is very uncommon and can be avoided by monitoring very simple parameters such as serum and urine calcium levels and paying attention to flank pain and other symptoms of kidney stones.Additional Effects of Vitamin D in Sarcoidosis Recently it has been demonstrated that calcitriol affects the immune system in a manner that favors granuloma formation. Various immune cells have receptors for vitamin D. When vitamin D binds to these receptors, lymphocytes (a type of white blood cell) proliferate, immunoglobulin (antibody) production increases and monocytes/macrophages differentiate into the types of cells that form granulomas. One reference demonstrates that calcitriol stimulates macrophages in the granulomas to make angiotensin converting enzyme (ACE) which has been used as a marker for sarcoidosis for many years. In turn, ACE may stimulate macrophages to perform many of their protective functions. Overall this suggests that calcitriol may favor mechanisms that protect against invasion by foreign bodies. However, the data could also be interpreted as being detrimental or even just neutral to the whole process. Clear-cut ramifications of these findings awaits further study as it is too premature to formulate conclusions at this time. Clinical trials involving patients (not only cells in culture) need to be performed.Therapy and Other Recommendations Not everyone with sarcoidosis needs therapy. Furthermore, not everyone with hypercalcemia or hypercalciuria needs therapy. The magnitude of elevations of calcium levels as well as the duration of elevation will determine the need for therapy. Frequently, elevations are transient and require no therapy. Chronic elevations might need to be treated. Prednisone (a corticosteroid) is usually the drug of choice since it can reduce production of calcitriol fairly quickly. Usually the effect on lowering serum calcium is noticeable within 3-5 days. The effect on urinary calcium occurs shortly thereafter, about 7-10 days. This short duration of therapy usually minimizes the side effects, but, if the side effects are unbearable, chloroquine or hydroxychloroquine can be used. Ketoconazole has been used but with variable results, and most physicians do not use it for this purpose. Dietary restriction of calcium is needed but not total elimination of calcium from the diet. The same can be said for sunlight; it is not necessary to totally avoid sunlight, just to minimize excessive exposure.Summary Hypercalcemia and hypercalciuria occur in a minority of patients with sarcoidosis. Usually the consequences are minimal, but, if left unchecked, could lead to kidney stones and even kidney failure. Mechanisms suggest a broader role for vitamin D than just hormonal, and may include various immunologic regulatory functions. While these functions are intermediary and not causal, suppression of some of them by corticosteroids or other immunosuppressive medications could play a role in controlling some of the manifestations of sarcoidosis. More accurate and more clinically oriented studies are required before further implications can be made at this time. In addition to medication, simple measures may be of benefit in a subgroup of patients. These include refraining from overindulgence in exposure to sunlight and ingestion of calcium and vitamin D. However, total abstinence from these substances is not usually required or recommended.References 1. Harrell GT and Fisher S. Blood chemical changes in Boeck’s sarcoid, with particular reference to protein, calcium and phosphatase values. J. Clin Invest 18:687-693, 1939.2. Scadding G. Sarcoidosis. Eyre and Spottiswoode, London., 1967, pp. 193, 338, 340, 341, 346, 347, 348, 349, 352, 353, 354, 509.3. Barbour GL, Coburn JW, Slatopolosky E. Hypercalcemia in an anephric patient with sarcoidosis. Evidence for extrarenal generation of 1,25-dihydroxyvitamin D. N Engl J Med 305:440-443, 1981.4. JS, Sharma OP, Gacad MA, et al: Metabolism of 25-hydroxyvitamin D3 by cultured pulmonary macrophages in sarcoidosis. J Clin Invest 72:1856-1860, 1983.5. Selroos OBN: Biochemical markers in sarcoidosis. Crit Rev Clin Lab Sci 24:185-216, 1986.6. Nishimua M, Hara A, Nojima H, Mashimo M, Hori Y. Possible role of the hormonal form of vitamin D3 in the granuloma-associated angiotensin-converting enzyme activity. Sarcoidosis 1991 8:101-4.7. Basile JN, Liel Y, Shary J, et al: Increased calcium intake does not suppress circulating 1,25-dihydroxyvitamin D in normocalcemic patients with sarcoidosis. J Clin Invest 91:1396-1398, 1993.8. Sharma OP. Vitamin D, Calcium, and Sarcoidosis. Chest 109:535-539, 1996.9. Costabel U, Teschler H. Biochemical Changes in Sarcoidosis. Clinics in Chest Medicine 18:827-842, 1997. Reprinted by permission. Norman T. Soskel, MD http://www.sarcoidcenter.com The above questions are taken from Dr. Soskel’s site linking the online book entitled "Sarcoidosis" by Dr. Sharma.Ed. Note: A patient should consult with his or her personal physician before changing or considering any medical treatments or health related changes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Good Morning! Tracie, First, thank you for getting the spelling of my name correct. I do appreciate it. Second, I did not start my posts on this site as " an online argument " . If you go back and read my posts, from the beginning, I started out to share the information of what happened to me. I am sorry that my enthusiasim, for how well I am feeling, has become offensive. I got defensive, when the fact, that I have been seeing Dr. Baughman and he agrees with my improvements and told me to continue the minocycline, was put into question (actually, it was implied). I felt that I was being called a liar. I am not. Taking the minocycline protocol has not been a piece of cake. I am on a Monday, Wednesday, Friday dosing. I DO get the Herximer reaction, so do not feel as well on those days, after taking the meds. However, I can do whatever I want (including a 10 day Trans-Atlantic cruise in Sept. '03) on Tuesday, Thursday, Saturday and Sunday. Was the Herx bad at first? Yep. Do I still have days when it is bad? Yep. But, the difference in how I feel and what I can do now, when compared to this time last year, is like night and day. When my body catches up to the dose level for the Herx, I have good health/energy for the whole week. It is only when I increase the dose or add another abx that the Herx reaction comes back. When you say that the antibiotic made you sick and gave you a terrrible yeast infection, could you have been having a Herx reaction? Did you take a Mulitidolpholus (you can eat yogurt, but these are more effective) to add good bacteria back in to your body and counter act what the antibiotic was taking out? If I forget to take the Multidolpholus, I get yeast problems, too. In fact, I was very nervous about starting on this protocol, for that very reason. I have always had yeast problems after taking antibiotics, but this has solved that problem for me. Everyone has to be responsible for their own health. I listened to my intuition about what, in my heart, I knew was the right thing for me. Ultimately, it was the right choice for me. It was not easy finding a Doctor who would do this protocol, for all of the reasons that you have stated. Even Dr. Baughman questioned me about it, when I first saw him in May '03. Ultimately, he did agree, as did my DO, for me to give it a 6 month trial. As I said before, Dr. B was so impressed with my progress, when he saw me in Nov. '03, that he told me to continue. He is the one who explained to me the reasons why there have been no clinical trials on the minocycline/benicar protocol. He is the one who said that he will run one, if I can find the funds for him to do so. My original intent was to inform and hope that someone else, who has neurosarc, might benefit from my experience. It only turned confrontational, when my integrity was questioned. I ride/teach and train horses/people for a living. A natural horsemanship trainer once asked me, " What's your life worth? " , when I was working with a dangerous horse. Mine is worth everything to me! Taking charge of my own health issues, doing the research myself and following my instincts were what was right for me. Everyong has to make choices in this life. In Sarcoidosis, they can be worth your quality of life. If this was too confrontational for you, I will not bother you again. Please keep an open mind and be happy for my success in improving the quality of my life. Sincerely, Lowelle -- In Neurosarcoidosis , tiodaat@a... wrote: > Lowelle, > > Aisha is VERY SICK right now-- and has just started another type of TB > protocol drug. She may not be able to answer your post right now. > > As far as the Vitamin D info, I will include an article that goes over the > stats from one of our MD's that is familar with Vit D and sarcoidosis. > > Believe me, there isn't anything they haven't run in the way of tests on > Aisha. And because of her excellant research on NS, which was proofed and > inspected by several MD's- all of us have a resource that we can take in hand to our > MD's. I hope you've looked at the NS site: > http://www.elderwyn.com/neurosarcoidosis/. > > I am glad that this antibiotic works for you. I know that several years ago, > my MD tried me on it, just in case this had a secondary infection component. > All it did for me was to give me such a systemic yeast infection that we had > to discontinue it and treat me for the systemic yeast. It took months, > literally, to get my body back to normal. When I say systemic, I mean vaginal > yeast, rectal, oral, every lymphnode, sweat gland, under my breasts, behind my > knees-- not a good thing at all. > > As for me, I've had pulm sarc since 1992 or so, it was also affecting my > eyes. After 3 1/2 years of prednisone, I went into remission. Four years ago it > came back, again starting with my eyes, and my lungs, and had gone systemic to > muscle, ligaments, joints, bone, and brain. My pulmonologist at the time, > insisted on prednisone again, and all we did was feed the granulomas- and make me > nuts. Finally, I got to a pulm that put me on Imuran, and referred me to > specialists in Sacramento. I now have the head of the Pulmonary Dept, the > Neurology, and the Rheumitology/Immunology depts at UC Medical School working > on me. > > They have checked everything from my Vit D and Calcium levels, > (unfortunately, I don't remember the results) and they fell into the normal range. My > PFT's, neuropsych testing, EEG's, EKG's, ACE, CRP and many, many other tests > confirmed that there is muscle, nerve, brain damage. The ACE and CRP showed extreme > systemic inflammation. Several of the antibody titers were also out of > range, but did not confirm Lymes or MS. > > Lowelle, all of us have been put thru the medical ringer here, some of us > with a dx some still waiting on one. Most of us grew up on antibiotics for some > form of chronic something. I do know that when I was initially dx with pulm > sarc, my pulm put me on two antibiotics, so that both bacterial and staph or > whatever could be killed if that was the cause. I probably had a low grade > infection, so I got a little better for a while, but it still didn't improve my > PFT's, so it was pred over a long period of time. > > I'm sure that some of the people here will ask their MD's about the > Minocycline therapy from what you've posted. I wish that antibiotic therapy would work > for me-- it hasn't been the answer in my case. > > One of the things we try very hard to do with this website is to share info > that is showing improvement in patients with serious NS. We have a couple of > MD's, several nurses, and a few of us that have been researching this disease > for a long time. The info we share comes directly from the encounters with our > MD's. It also comes from spending thousands of hours behind this screen. > Every one of us wants to be healthy. > > What I'd suggest to you is that you kick back, read some of the archived > posts- there is a tremendous wealth of info there, and relax. I know you're > excited about what has worked for you. What we won't tolerate is online arguments. > > > Sincerely, > Tracie > NS MODERATOR > > Ask the Doctor > Our online physician answers questions about sarcoidosis > > Preface: > > We were contacted by many patients that there was a method of eliminating > > flare-ups of sarcoidosis by simply wearing sunglasses and avoiding sunlight, > > even to wear special clothes to cover up and making our homes as dark as > > possible to avoid exposure. They were told to avoid all foods with vitamin D and > > calcium as this would deter flare-ups of sarcoidosis.We called upon Dr. Norman > > Soskel to help us in explaining the correlation of vitamin D, exposure to > > sunlight and ingestion of calcium and how it affects patients with sarcoidosis. > > He was generous in writing an article exclusively for this newsletter and > > explained it in laymanâ??s terms. It appears as though for a select few there may > > be a link, but it is far too early to come to any drastic conclusions. Dr. > > Norman Soskelâ??s best advice for these few patients is in addition to > > medication, to refrain from overindulgence in exposure to sunlight and ingestion of > > calcium and vitamin D, but indicates that total abstinence is usually not > > required or recommended. Of course he recommends talking to your health care > > provider as a first step.Dr. Norman Soskel runs a non-profit organization and an > > information rich website at: http://www.sarcoidcenter.com.that helps give > > credible information to sarcoidosis patients and caregivers.The Significance of > > Calcium and Vitamin D in SarcoidosisNorman T. Soskel, MD, FACP, FCCPSarcoidosis > > CenterMemphis, TennesseeFebruary 4, 2003Calcium metabolism in patients with > > sarcoidosis has been studied since the first intriguing reports by Harrell, > > et al in 1939 demonstrated elevated serum levels of calcium (hypercalcemia) in > > those patients. Even more common is hypercalciuria (elevated calcium in the > > urine). Exposure to sunlight is believed to contribute to this by way of > > vitamin D metabolism and is counteracted with therapy by avoiding sunlight as > > well as corticosteroid ingestion. Newer data suggests immunological functions of > > vitamin D with respect to granuloma formation. The exact significance of > > these will be discussed in this communication. A detailed scientific discussion > > is beyond the scope and intent of this article. The major purpose is to > > discuss in terms most people can appreciate, the way in which calcium is handled > > by the body in normal individuals and in people with sarcoidosis, what health > > concerns result and how and when they are treated.A certain amount of > > scientific/medical jargon is required but this will be kept to a minimum.Calcium and > > Vitamin D Metabolism > > Calcium is taken in orally and is absorbed in the gastrointestinal tract. It > is excreted through the kidneys into the urine. Additional calcium can be > reclaimed from the bones. This process is regulated by vitamin D and parathyroid > hormone, among other factors. Vitamin D enhances absorption in the GI tract but > not excretion in the kidneys. The latter is determined by calcium fluxes from > the gut and bone. Vitamin D is produced in the skin as a result of exposure > to ultraviolet B rays from sunlight in the form of a precursor that is > inactive. It spontaneously converts to vitamin D3 which is initially inert. In order > to become biologically active it must undergo addition of two chemicals called > hydroxyl groups. The first is attached in the liver forming 25 hydroxyvitamin > D3. The second is added in the kidney to form 1,25 dihydroxy-vitamin D3 or > 1,25(OH)2-D3 which is the active form of the hormone, sometimes referred to as > calcitriol. A major finding was that the macrophages (cells) can convert the > inactive to the active form of vitamin D in the granulomas of sarcoidosis. > Hypercalcemia and Hypercalciuria in Sarcoidosis > While it is true that hypercalciuria is three times more common than > hypercalcemia in sarcoidosis, several important discoveries aid our understanding of > the uniqueness of the findings in that disease. The site of overproduction of > calcitriol is extrarenal. Alveolar macrophages (cells in the lungs) make > calcitriol in sarcoidosis, specifically the macrophages in the granulomas > themselves. Another important observation is the fact that hypercalcemia can occur in > other granulomatous diseases. Hypercalciuria may occur without hypercalcemia, > but the reverse is not true; that is, hypercalcemia is always associated with > hypercalciuria. Hypercalcemia, if extreme, can cause severe health problems, > however, this rarely occurs even in the worst cases of sarcoidosis. Development > of kidney stones can occur, especially with hypercalciuria, and, if left > unchecked, could lead to kidney damage and even kidney failure. But, again, this is > very uncommon and can be avoided by monitoring very simple parameters such as > serum and urine calcium levels and paying attention to flank pain and other > symptoms of kidney stones.Additional Effects of Vitamin D in Sarcoidosis > Recently it has been demonstrated that calcitriol affects the immune system > in a manner that favors granuloma formation. Various immune cells have > receptors for vitamin D. When vitamin D binds to these receptors, lymphocytes (a type > of white blood cell) proliferate, immunoglobulin (antibody) production > increases and monocytes/macrophages differentiate into the types of cells that form > granulomas. One reference demonstrates that calcitriol stimulates macrophages > in the granulomas to make angiotensin converting enzyme (ACE) which has been > used as a marker for sarcoidosis for many years. In turn, ACE may stimulate > macrophages to perform many of their protective functions. Overall this suggests > that calcitriol may favor mechanisms that protect against invasion by foreign > bodies. However, the data could also be interpreted as being detrimental or > even just neutral to the whole process. Clear-cut ramifications of these findings > awaits further study as it is too premature to formulate conclusions at this > time. Clinical trials involving patients (not only cells in culture) need to > be performed.Therapy and Other Recommendations > Not everyone with sarcoidosis needs therapy. Furthermore, not everyone with > hypercalcemia or hypercalciuria needs therapy. The magnitude of elevations of > calcium levels as well as the duration of elevation will determine the need for > therapy. Frequently, elevations are transient and require no therapy. Chronic > elevations might need to be treated. Prednisone (a corticosteroid) is usually > the drug of choice since it can reduce production of calcitriol fairly > quickly. Usually the effect on lowering serum calcium is noticeable within 3-5 days. > The effect on urinary calcium occurs shortly thereafter, about 7-10 days. > This short duration of therapy usually minimizes the side effects, but, if the > side effects are unbearable, chloroquine or hydroxychloroquine can be used. > Ketoconazole has been used but with variable results, and most physicians do not > use it for this purpose. Dietary restriction of calcium is needed but not total > elimination of calcium from the diet. The same can be said for sunlight; it > is not necessary to totally avoid sunlight, just to minimize excessive > exposure.Summary > Hypercalcemia and hypercalciuria occur in a minority of patients with > sarcoidosis. Usually the consequences are minimal, but, if left unchecked, could lead > to kidney stones and even kidney failure. Mechanisms suggest a broader role > for vitamin D than just hormonal, and may include various immunologic > regulatory functions. While these functions are intermediary and not causal, > suppression of some of them by corticosteroids or other immunosuppressive medications > could play a role in controlling some of the manifestations of sarcoidosis. More > accurate and more clinically oriented studies are required before further > implications can be made at this time. In addition to medication, simple measures > may be of benefit in a subgroup of patients. These include refraining from > overindulgence in exposure to sunlight and ingestion of calcium and vitamin D. > However, total abstinence from these substances is not usually required or > recommended.References > > 1. Harrell GT and Fisher S. Blood chemical changes in Boeckâ??s sarcoid, with > > particular reference to protein, calcium and phosphatase values. J. Clin > > Invest 18:687-693, 1939.2. Scadding G. Sarcoidosis. Eyre and Spottiswoode, > > London., 1967, pp. 193, 338, 340, 341, 346, 347, 348, 349, 352, 353, 354, 509.3. > > Barbour GL, Coburn JW, Slatopolosky E. Hypercalcemia in an anephric patient > > with sarcoidosis. > > Evidence for extrarenal generation of 1,25-dihydroxyvitamin D. N Engl J Med > > 305:440-443, 1981.4. JS, Sharma OP, Gacad MA, et al: Metabolism of > > 25-hydroxyvitamin D3 by cultured pulmonary macrophages in sarcoidosis. J Clin > > Invest 72:1856-1860, 1983.5. Selroos OBN: Biochemical markers in sarcoidosis. > > Crit Rev Clin Lab Sci 24:185-216, 1986.6. Nishimua M, Hara A, Nojima H, Mashimo > > M, Hori Y. Possible role of the hormonal form of vitamin D3 in the > > granuloma-associated angiotensin-converting enzyme activity. Sarcoidosis 1991 > > 8:101-4.7. Basile JN, Liel Y, Shary J, et al: Increased calcium intake does not > > suppress circulating 1,25-dihydroxyvitamin D in normocalcemic patients with > > sarcoidosis. J Clin Invest 91:1396-1398, 1993.8. Sharma OP. Vitamin D, Calcium, and > > Sarcoidosis. Chest 109:535-539, 1996.9. Costabel U, Teschler H. Biochemical > > Changes in Sarcoidosis. Clinics in Chest Medicine 18:827-842, 1997. > Reprinted by permission. Norman T. Soskel, MD http://www.sarcoidcenter.com > The above questions are taken from Dr. Soskelâ??s site linking the online book > entitled " Sarcoidosis " by Dr. Sharma.Ed. Note: A patient should consult with > his or her personal physician before changing or considering any medical > treatments or health related changes. 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Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 First, thank you for getting the spelling of my name correct. I do appreciate it. LOL! Lowelle, As a Trac(ie)-- I can totally appreciate your appreciation. I got defensive, when the fact, that I have been seeing Dr. Baughman and he agrees with my improvements and told me to continue the minocycline, was put into question (actually, it was implied). I felt that I was being called a liar. I am not. Lowelle, I apologize-- no one was trying to call you a liar. I know that when anyone's integrity is being attacked, we do get defensive. Taking the minocycline protocol has not been a piece of cake. I am on a Monday, Wednesday, Friday dosing. I DO get the Herximer reaction, so do not feel as well on those days, after taking the meds. However, I can do whatever I want (including a 10 day Trans-Atlantic cruise in Sept. '03) on Tuesday, Thursday, Saturday and Sunday. Was the Herx bad at first? Yep. Do I still have days when it is bad? Yep. But, the difference in how I feel and what I can do now, when compared to this time last year, is like night and day. When my body catches up to the dose level for the Herx, I have good health/energy for the whole week. It is only when I increase the dose or add another abx that the Herx reaction comes back. When you say that the antibiotic made you sick and gave you a terrrible yeast infection, could you have been having a Herx reaction? Did you take a Mulitidolpholus (you can eat yogurt, but these are more effective) to add good bacteria back in to your body and counter act what the antibiotic was taking out? If I forget to take the Multidolpholus, I get yeast problems, too. In fact, I was very nervous about starting on this protocol, for that very reason. I have always had yeast problems after taking antibiotics, but this has solved that problem for me. Months and months and still months of taking Acidophyllis is necessary to keep the yeast at bay-- unfortunately, this is a drug that didn't do anything for my sarc, but the makers of Diflucan, Monistat, and all the other goodies to treat yeast have an extra room in their homes because of my bodies reaction to this medication. Everyone has to be responsible for their own health. I listened to my intuition about what, in my heart, I knew was the right thing for me. Ultimately, it was the right choice for me. It was not easy finding a Doctor who would do this protocol, for all of the reasons that you have stated. Even Dr. Baughman questioned me about it, when I first saw him in May '03. Ultimately, he did agree, as did my DO, for me to give it a 6 month trial. As I said before, Dr. B was so impressed with my progress, when he saw me in Nov. '03, that he told me to continue. He is the one who explained to me the reasons why there have been no clinical trials on the minocycline/benicar protocol. He is the one who said that he will run one, if I can find the funds for him to do so. My point exactly-- what works for one person may not be the answer for all the people. It is up to us to educate ourselves, so that we can educate our MD's. We've all experienced the MD process that says steroids are the only answer, and those of us on this group have the systemic and NS problems in part due to their ignorance. Taking charge of my own health issues, doing the research myself and following my instincts were what was right for me. Everyong has to make choices in this life. In Sarcoidosis, they can be worth your quality of life. This is exactly what we are about-- making choices that will inhance our quality of life. As I said in my previous post, I hope that someone does take this info to their MD and ask questions about it. Please keep an open mind and be happy for my success in improving the quality of my life. I am happy that this is working for you, as is the protocols that some of us are on. Sincerely, Lowelle To all of the NS group-- as you know, the information we share is not meant to replace the care of your MD's. We strive to give you the most accurate information possible. But we are not medical professionals-- we are patients, like yourself, doing the best we can with the info we have. Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , I've been watching all this and I have to step in to say something at this point. Lowelle is not the one arguing. She's saying these meds have helped her that Dr. Marshall is testing. Unless you used the exact same protocol you don't know if this would work for you or not. Hey, nobody's forcing you to take it. Just don't stand in the way as if it's a taboo subject of those of us who might be interested. I see people on here talking about every medicine there is and they don't get that kind of reaction. If you can support Aisha taking her untested meds for TB then you can support Lowelle and the rest of us who do want to hear what she's got to say about it. If you've got a personal issue with antibiotics that's you, not the rest of us. I can tell you right now Minocin's not the worst thing you can take. Alot of these other medicines for Sarc cause alot worse than a yeast infection, things that do not go away like a myocardial infarction, or avascular necrosis. I've been keeping up with Sarcinfo. and talking with some of them over there who are on the protocol and there are people over there with neurosarc. This isn't the only site with hardcore neurosarc people. They have their share too. And theirs are getting better. They're not fishing around trying to reinvent the wheel because the research has been done there enough to know even before it gets studied anywhere else. Come on folks, let's be real. If it didn't work all those people wouldn't be there and staying with it. Some of them tried these other meds and it didn't work and some have damage to remember it by the rest of their life. Aisha keeps asking if people are cured. They don't have to be cured for it to be working. How many people are cured on any of these other meds? Nada. Plus, there are doctors reviewing what goes onto Sarcinfo and it's run by a professional, a scientist; not just a patient. Scientists are trained on how to do research and they can sniff out bad science when they read it. You can't compete with that. Best to keep this group a support group and leave the science to the scientists. These people eat statistics for breakfast, lunch and dinner. You're just not gonna find another site more qualified. I know a good thing when I see it and I'm not gonna look a gift horse in the mouth. Maybe it's you who needs to relax and kick back and read what's archived in that site. It's www.sarcinfo.com . Here's your brain on neurosarcoidosisgroups. Here's your brain on Sarcinfo. Any questions? Mini tiodaat@... wrote: Lowelle,Aisha is VERY SICK right now-- and has just started another type of TB protocol drug. She may not be able to answer your post right now.As far as the Vitamin D info, I will include an article that goes over the stats from one of our MD's that is familar with Vit D and sarcoidosis. Believe me, there isn't anything they haven't run in the way of tests on Aisha. And because of her excellant research on NS, which was proofed and inspected by several MD's- all of us have a resource that we can take in hand to our MD's. I hope you've looked at the NS site: http://www.elderwyn.com/neurosarcoidosis/.I am glad that this antibiotic works for you. I know that several years ago, my MD tried me on it, just in case this had a secondary infection component. All it did for me was to give me such a systemic yeast infection that we had to discontinue it and treat me for the systemic yeast. It took months, literally, to get my body back to normal. When I say systemic, I mean vaginal yeast, rectal, oral, every lymphnode, sweat gland, under my breasts, behind my knees-- not a good thing at all.As for me, I've had pulm sarc since 1992 or so, it was also affecting my eyes. After 3 1/2 years of prednisone, I went into remission. Four years ago it came back, again starting with my eyes, and my lungs, and had gone systemic to muscle, ligaments, joints, bone, and brain. My pulmonologist at the time, insisted on prednisone again, and all we did was feed the granulomas- and make me nuts. Finally, I got to a pulm that put me on Imuran, and referred me to specialists in Sacramento. I now have the head of the Pulmonary Dept, the Neurology, and the Rheumitology/Immunology depts at UC Medical School working on me. They have checked everything from my Vit D and Calcium levels, (unfortunately, I don't remember the results) and they fell into the normal range. My PFT's, neuropsych testing, EEG's, EKG's, ACE, CRP and many, many other tests confirmed that there is muscle, nerve, brain damage. The ACE and CRP showed extreme systemic inflammation. Several of the antibody titers were also out of range, but did not confirm Lymes or MS. Lowelle, all of us have been put thru the medical ringer here, some of us with a dx some still waiting on one. Most of us grew up on antibiotics for some form of chronic something. I do know that when I was initially dx with pulm sarc, my pulm put me on two antibiotics, so that both bacterial and staph or whatever could be killed if that was the cause. I probably had a low grade infection, so I got a little better for a while, but it still didn't improve my PFT's, so it was pred over a long period of time. I'm sure that some of the people here will ask their MD's about the Minocycline therapy from what you've posted. I wish that antibiotic therapy would work for me-- it hasn't been the answer in my case. One of the things we try very hard to do with this website is to share info that is showing improvement in patients with serious NS. We have a couple of MD's, several nurses, and a few of us that have been researching this disease for a long time. The info we share comes directly from the encounters with our MD's. It also comes from spending thousands of hours behind this screen. Every one of us wants to be healthy. What I'd suggest to you is that you kick back, read some of the archived posts- there is a tremendous wealth of info there, and relax. I know you're excited about what has worked for you. What we won't tolerate is online arguments. Sincerely,TracieNS MODERATORAsk the DoctorOur online physician answers questions about sarcoidosis Preface:We were contacted by many patients that there was a method of eliminating flare-ups of sarcoidosis by simply wearing sunglasses and avoiding sunlight, even to wear special clothes to cover up and making our homes as dark as possible to avoid exposure. They were told to avoid all foods with vitamin D and calcium as this would deter flare-ups of sarcoidosis.We called upon Dr. Norman Soskel to help us in explaining the correlation of vitamin D, exposure to sunlight and ingestion of calcium and how it affects patients with sarcoidosis. He was generous in writing an article exclusively for this newsletter and explained it in layman’s terms. It appears as though for a select few there may be a link, but it is far too early to come to any drastic conclusions. Dr. Norman Soskel’s best advice for these few patients is in addition to medication, to refrain from overindulgence in exposure to sunlight and ingestion of calcium and vitamin D, but indicates that total abstinence is usually not required or recommended. Of course he recommends talking to your health care provider as a first step.Dr. Norman Soskel runs a non-profit organization and an information rich website at: http://www.sarcoidcenter.com.that helps give credible information to sarcoidosis patients and caregivers.The Significance of Calcium and Vitamin D in SarcoidosisNorman T. Soskel, MD, FACP, FCCPSarcoidosis CenterMemphis, TennesseeFebruary 4, 2003Calcium metabolism in patients with sarcoidosis has been studied since the first intriguing reports by Harrell, et al in 1939 demonstrated elevated serum levels of calcium (hypercalcemia) in those patients. Even more common is hypercalciuria (elevated calcium in the urine). Exposure to sunlight is believed to contribute to this by way of vitamin D metabolism and is counteracted with therapy by avoiding sunlight as well as corticosteroid ingestion. Newer data suggests immunological functions of vitamin D with respect to granuloma formation. The exact significance of these will be discussed in this communication. A detailed scientific discussion is beyond the scope and intent of this article. The major purpose is to discuss in terms most people can appreciate, the way in which calcium is handled by the body in normal individuals and in people with sarcoidosis, what health concerns result and how and when they are treated.A certain amount of scientific/medical jargon is required but this will be kept to a minimum.Calcium and Vitamin D MetabolismCalcium is taken in orally and is absorbed in the gastrointestinal tract. It is excreted through the kidneys into the urine. Additional calcium can be reclaimed from the bones. This process is regulated by vitamin D and parathyroid hormone, among other factors. Vitamin D enhances absorption in the GI tract but not excretion in the kidneys. The latter is determined by calcium fluxes from the gut and bone. Vitamin D is produced in the skin as a result of exposure to ultraviolet B rays from sunlight in the form of a precursor that is inactive. It spontaneously converts to vitamin D3 which is initially inert. In order to become biologically active it must undergo addition of two chemicals called hydroxyl groups. The first is attached in the liver forming 25 hydroxyvitamin D3. The second is added in the kidney to form 1,25 dihydroxy-vitamin D3 or 1,25(OH)2-D3 which is the active form of the hormone, sometimes referred to as calcitriol. A major finding was that the macrophages (cells) can convert the inactive to the active form of vitamin D in the granulomas of sarcoidosis.Hypercalcemia and Hypercalciuria in SarcoidosisWhile it is true that hypercalciuria is three times more common than hypercalcemia in sarcoidosis, several important discoveries aid our understanding of the uniqueness of the findings in that disease. The site of overproduction of calcitriol is extrarenal. Alveolar macrophages (cells in the lungs) make calcitriol in sarcoidosis, specifically the macrophages in the granulomas themselves. Another important observation is the fact that hypercalcemia can occur in other granulomatous diseases. Hypercalciuria may occur without hypercalcemia, but the reverse is not true; that is, hypercalcemia is always associated with hypercalciuria. Hypercalcemia, if extreme, can cause severe health problems, however, this rarely occurs even in the worst cases of sarcoidosis. Development of kidney stones can occur, especially with hypercalciuria, and, if left unchecked, could lead to kidney damage and even kidney failure. But, again, this is very uncommon and can be avoided by monitoring very simple parameters such as serum and urine calcium levels and paying attention to flank pain and other symptoms of kidney stones.Additional Effects of Vitamin D in SarcoidosisRecently it has been demonstrated that calcitriol affects the immune system in a manner that favors granuloma formation. Various immune cells have receptors for vitamin D. When vitamin D binds to these receptors, lymphocytes (a type of white blood cell) proliferate, immunoglobulin (antibody) production increases and monocytes/macrophages differentiate into the types of cells that form granulomas. One reference demonstrates that calcitriol stimulates macrophages in the granulomas to make angiotensin converting enzyme (ACE) which has been used as a marker for sarcoidosis for many years. In turn, ACE may stimulate macrophages to perform many of their protective functions. Overall this suggests that calcitriol may favor mechanisms that protect against invasion by foreign bodies. However, the data could also be interpreted as being detrimental or even just neutral to the whole process. Clear-cut ramifications of these findings awaits further study as it is too premature to formulate conclusions at this time. Clinical trials involving patients (not only cells in culture) need to be performed.Therapy and Other RecommendationsNot everyone with sarcoidosis needs therapy. Furthermore, not everyone with hypercalcemia or hypercalciuria needs therapy. The magnitude of elevations of calcium levels as well as the duration of elevation will determine the need for therapy. Frequently, elevations are transient and require no therapy. Chronic elevations might need to be treated. Prednisone (a corticosteroid) is usually the drug of choice since it can reduce production of calcitriol fairly quickly. Usually the effect on lowering serum calcium is noticeable within 3-5 days. The effect on urinary calcium occurs shortly thereafter, about 7-10 days. This short duration of therapy usually minimizes the side effects, but, if the side effects are unbearable, chloroquine or hydroxychloroquine can be used. Ketoconazole has been used but with variable results, and most physicians do not use it for this purpose. Dietary restriction of calcium is needed but not total elimination of calcium from the diet. The same can be said for sunlight; it is not necessary to totally avoid sunlight, just to minimize excessive exposure.SummaryHypercalcemia and hypercalciuria occur in a minority of patients with sarcoidosis. Usually the consequences are minimal, but, if left unchecked, could lead to kidney stones and even kidney failure. Mechanisms suggest a broader role for vitamin D than just hormonal, and may include various immunologic regulatory functions. While these functions are intermediary and not causal, suppression of some of them by corticosteroids or other immunosuppressive medications could play a role in controlling some of the manifestations of sarcoidosis. More accurate and more clinically oriented studies are required before further implications can be made at this time. In addition to medication, simple measures may be of benefit in a subgroup of patients. These include refraining from overindulgence in exposure to sunlight and ingestion of calcium and vitamin D. However, total abstinence from these substances is not usually required or recommended.References 1. Harrell GT and Fisher S. Blood chemical changes in Boeck’s sarcoid, with particular reference to protein, calcium and phosphatase values. J. Clin Invest 18:687-693, 1939.2. Scadding G. Sarcoidosis. Eyre and Spottiswoode, London., 1967, pp. 193, 338, 340, 341, 346, 347, 348, 349, 352, 353, 354, 509.3. Barbour GL, Coburn JW, Slatopolosky E. Hypercalcemia in an anephric patient with sarcoidosis.Evidence for extrarenal generation of 1,25-dihydroxyvitamin D. N Engl J Med 305:440-443, 1981.4. JS, Sharma OP, Gacad MA, et al: Metabolism of 25-hydroxyvitamin D3 by cultured pulmonary macrophages in sarcoidosis. J Clin Invest 72:1856-1860, 1983.5. Selroos OBN: Biochemical markers in sarcoidosis. Crit Rev Clin Lab Sci 24:185-216, 1986.6. Nishimua M, Hara A, Nojima H, Mashimo M, Hori Y. Possible role of the hormonal form of vitamin D3 in the granuloma-associated angiotensin-converting enzyme activity. Sarcoidosis 1991 8:101-4.7. Basile JN, Liel Y, Shary J, et al: Increased calcium intake does not suppress circulating 1,25-dihydroxyvitamin D in normocalcemic patients with sarcoidosis. J Clin Invest 91:1396-1398, 1993.8. Sharma OP. Vitamin D, Calcium, and Sarcoidosis. Chest 109:535-539, 1996.9. Costabel U, Teschler H. Biochemical Changes in Sarcoidosis. Clinics in Chest Medicine 18:827-842, 1997.Reprinted by permission. Norman T. Soskel, MD http://www.sarcoidcenter.com The above questions are taken from Dr. Soskel’s site linking the online book entitled "Sarcoidosis" by Dr. Sharma.Ed. Note: A patient should consult with his or her personal physician before changing or considering any medical treatments or health related changes.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , I've been watching all this and I have to step in to say something at this point. Lowelle is not the one arguing. She's saying these meds have helped her that Dr. Marshall is testing. Unless you used the exact same protocol you don't know if this would work for you or not. Hey, nobody's forcing you to take it. Just don't stand in the way as if it's a taboo subject of those of us who might be interested. I see people on here talking about every medicine there is and they don't get that kind of reaction. If you can support Aisha taking her untested meds for TB then you can support Lowelle and the rest of us who do want to hear what she's got to say about it. If you've got a personal issue with antibiotics that's you, not the rest of us. I can tell you right now Minocin's not the worst thing you can take. Alot of these other medicines for Sarc cause alot worse than a yeast infection, things that do not go away like a myocardial infarction, or avascular necrosis. I've been keeping up with Sarcinfo. and talking with some of them over there who are on the protocol and there are people over there with neurosarc. This isn't the only site with hardcore neurosarc people. They have their share too. And theirs are getting better. They're not fishing around trying to reinvent the wheel because the research has been done there enough to know even before it gets studied anywhere else. Come on folks, let's be real. If it didn't work all those people wouldn't be there and staying with it. Some of them tried these other meds and it didn't work and some have damage to remember it by the rest of their life. Aisha keeps asking if people are cured. They don't have to be cured for it to be working. How many people are cured on any of these other meds? Nada. Plus, there are doctors reviewing what goes onto Sarcinfo and it's run by a professional, a scientist; not just a patient. Scientists are trained on how to do research and they can sniff out bad science when they read it. You can't compete with that. Best to keep this group a support group and leave the science to the scientists. These people eat statistics for breakfast, lunch and dinner. You're just not gonna find another site more qualified. I know a good thing when I see it and I'm not gonna look a gift horse in the mouth. Maybe it's you who needs to relax and kick back and read what's archived in that site. It's www.sarcinfo.com . Here's your brain on neurosarcoidosisgroups. Here's your brain on Sarcinfo. Any questions? Mini tiodaat@... wrote: Lowelle,Aisha is VERY SICK right now-- and has just started another type of TB protocol drug. She may not be able to answer your post right now.As far as the Vitamin D info, I will include an article that goes over the stats from one of our MD's that is familar with Vit D and sarcoidosis. Believe me, there isn't anything they haven't run in the way of tests on Aisha. And because of her excellant research on NS, which was proofed and inspected by several MD's- all of us have a resource that we can take in hand to our MD's. I hope you've looked at the NS site: http://www.elderwyn.com/neurosarcoidosis/.I am glad that this antibiotic works for you. I know that several years ago, my MD tried me on it, just in case this had a secondary infection component. All it did for me was to give me such a systemic yeast infection that we had to discontinue it and treat me for the systemic yeast. It took months, literally, to get my body back to normal. When I say systemic, I mean vaginal yeast, rectal, oral, every lymphnode, sweat gland, under my breasts, behind my knees-- not a good thing at all.As for me, I've had pulm sarc since 1992 or so, it was also affecting my eyes. After 3 1/2 years of prednisone, I went into remission. Four years ago it came back, again starting with my eyes, and my lungs, and had gone systemic to muscle, ligaments, joints, bone, and brain. My pulmonologist at the time, insisted on prednisone again, and all we did was feed the granulomas- and make me nuts. Finally, I got to a pulm that put me on Imuran, and referred me to specialists in Sacramento. I now have the head of the Pulmonary Dept, the Neurology, and the Rheumitology/Immunology depts at UC Medical School working on me. They have checked everything from my Vit D and Calcium levels, (unfortunately, I don't remember the results) and they fell into the normal range. My PFT's, neuropsych testing, EEG's, EKG's, ACE, CRP and many, many other tests confirmed that there is muscle, nerve, brain damage. The ACE and CRP showed extreme systemic inflammation. Several of the antibody titers were also out of range, but did not confirm Lymes or MS. Lowelle, all of us have been put thru the medical ringer here, some of us with a dx some still waiting on one. Most of us grew up on antibiotics for some form of chronic something. I do know that when I was initially dx with pulm sarc, my pulm put me on two antibiotics, so that both bacterial and staph or whatever could be killed if that was the cause. I probably had a low grade infection, so I got a little better for a while, but it still didn't improve my PFT's, so it was pred over a long period of time. I'm sure that some of the people here will ask their MD's about the Minocycline therapy from what you've posted. I wish that antibiotic therapy would work for me-- it hasn't been the answer in my case. One of the things we try very hard to do with this website is to share info that is showing improvement in patients with serious NS. We have a couple of MD's, several nurses, and a few of us that have been researching this disease for a long time. The info we share comes directly from the encounters with our MD's. It also comes from spending thousands of hours behind this screen. Every one of us wants to be healthy. What I'd suggest to you is that you kick back, read some of the archived posts- there is a tremendous wealth of info there, and relax. I know you're excited about what has worked for you. What we won't tolerate is online arguments. Sincerely,TracieNS MODERATORAsk the DoctorOur online physician answers questions about sarcoidosis Preface:We were contacted by many patients that there was a method of eliminating flare-ups of sarcoidosis by simply wearing sunglasses and avoiding sunlight, even to wear special clothes to cover up and making our homes as dark as possible to avoid exposure. They were told to avoid all foods with vitamin D and calcium as this would deter flare-ups of sarcoidosis.We called upon Dr. Norman Soskel to help us in explaining the correlation of vitamin D, exposure to sunlight and ingestion of calcium and how it affects patients with sarcoidosis. He was generous in writing an article exclusively for this newsletter and explained it in layman’s terms. It appears as though for a select few there may be a link, but it is far too early to come to any drastic conclusions. Dr. Norman Soskel’s best advice for these few patients is in addition to medication, to refrain from overindulgence in exposure to sunlight and ingestion of calcium and vitamin D, but indicates that total abstinence is usually not required or recommended. Of course he recommends talking to your health care provider as a first step.Dr. Norman Soskel runs a non-profit organization and an information rich website at: http://www.sarcoidcenter.com.that helps give credible information to sarcoidosis patients and caregivers.The Significance of Calcium and Vitamin D in SarcoidosisNorman T. Soskel, MD, FACP, FCCPSarcoidosis CenterMemphis, TennesseeFebruary 4, 2003Calcium metabolism in patients with sarcoidosis has been studied since the first intriguing reports by Harrell, et al in 1939 demonstrated elevated serum levels of calcium (hypercalcemia) in those patients. Even more common is hypercalciuria (elevated calcium in the urine). Exposure to sunlight is believed to contribute to this by way of vitamin D metabolism and is counteracted with therapy by avoiding sunlight as well as corticosteroid ingestion. Newer data suggests immunological functions of vitamin D with respect to granuloma formation. The exact significance of these will be discussed in this communication. A detailed scientific discussion is beyond the scope and intent of this article. The major purpose is to discuss in terms most people can appreciate, the way in which calcium is handled by the body in normal individuals and in people with sarcoidosis, what health concerns result and how and when they are treated.A certain amount of scientific/medical jargon is required but this will be kept to a minimum.Calcium and Vitamin D MetabolismCalcium is taken in orally and is absorbed in the gastrointestinal tract. It is excreted through the kidneys into the urine. Additional calcium can be reclaimed from the bones. This process is regulated by vitamin D and parathyroid hormone, among other factors. Vitamin D enhances absorption in the GI tract but not excretion in the kidneys. The latter is determined by calcium fluxes from the gut and bone. Vitamin D is produced in the skin as a result of exposure to ultraviolet B rays from sunlight in the form of a precursor that is inactive. It spontaneously converts to vitamin D3 which is initially inert. In order to become biologically active it must undergo addition of two chemicals called hydroxyl groups. The first is attached in the liver forming 25 hydroxyvitamin D3. The second is added in the kidney to form 1,25 dihydroxy-vitamin D3 or 1,25(OH)2-D3 which is the active form of the hormone, sometimes referred to as calcitriol. A major finding was that the macrophages (cells) can convert the inactive to the active form of vitamin D in the granulomas of sarcoidosis.Hypercalcemia and Hypercalciuria in SarcoidosisWhile it is true that hypercalciuria is three times more common than hypercalcemia in sarcoidosis, several important discoveries aid our understanding of the uniqueness of the findings in that disease. The site of overproduction of calcitriol is extrarenal. Alveolar macrophages (cells in the lungs) make calcitriol in sarcoidosis, specifically the macrophages in the granulomas themselves. Another important observation is the fact that hypercalcemia can occur in other granulomatous diseases. Hypercalciuria may occur without hypercalcemia, but the reverse is not true; that is, hypercalcemia is always associated with hypercalciuria. Hypercalcemia, if extreme, can cause severe health problems, however, this rarely occurs even in the worst cases of sarcoidosis. Development of kidney stones can occur, especially with hypercalciuria, and, if left unchecked, could lead to kidney damage and even kidney failure. But, again, this is very uncommon and can be avoided by monitoring very simple parameters such as serum and urine calcium levels and paying attention to flank pain and other symptoms of kidney stones.Additional Effects of Vitamin D in SarcoidosisRecently it has been demonstrated that calcitriol affects the immune system in a manner that favors granuloma formation. Various immune cells have receptors for vitamin D. When vitamin D binds to these receptors, lymphocytes (a type of white blood cell) proliferate, immunoglobulin (antibody) production increases and monocytes/macrophages differentiate into the types of cells that form granulomas. One reference demonstrates that calcitriol stimulates macrophages in the granulomas to make angiotensin converting enzyme (ACE) which has been used as a marker for sarcoidosis for many years. In turn, ACE may stimulate macrophages to perform many of their protective functions. Overall this suggests that calcitriol may favor mechanisms that protect against invasion by foreign bodies. However, the data could also be interpreted as being detrimental or even just neutral to the whole process. Clear-cut ramifications of these findings awaits further study as it is too premature to formulate conclusions at this time. Clinical trials involving patients (not only cells in culture) need to be performed.Therapy and Other RecommendationsNot everyone with sarcoidosis needs therapy. Furthermore, not everyone with hypercalcemia or hypercalciuria needs therapy. The magnitude of elevations of calcium levels as well as the duration of elevation will determine the need for therapy. Frequently, elevations are transient and require no therapy. Chronic elevations might need to be treated. Prednisone (a corticosteroid) is usually the drug of choice since it can reduce production of calcitriol fairly quickly. Usually the effect on lowering serum calcium is noticeable within 3-5 days. The effect on urinary calcium occurs shortly thereafter, about 7-10 days. This short duration of therapy usually minimizes the side effects, but, if the side effects are unbearable, chloroquine or hydroxychloroquine can be used. Ketoconazole has been used but with variable results, and most physicians do not use it for this purpose. Dietary restriction of calcium is needed but not total elimination of calcium from the diet. The same can be said for sunlight; it is not necessary to totally avoid sunlight, just to minimize excessive exposure.SummaryHypercalcemia and hypercalciuria occur in a minority of patients with sarcoidosis. Usually the consequences are minimal, but, if left unchecked, could lead to kidney stones and even kidney failure. Mechanisms suggest a broader role for vitamin D than just hormonal, and may include various immunologic regulatory functions. While these functions are intermediary and not causal, suppression of some of them by corticosteroids or other immunosuppressive medications could play a role in controlling some of the manifestations of sarcoidosis. More accurate and more clinically oriented studies are required before further implications can be made at this time. In addition to medication, simple measures may be of benefit in a subgroup of patients. These include refraining from overindulgence in exposure to sunlight and ingestion of calcium and vitamin D. However, total abstinence from these substances is not usually required or recommended.References 1. Harrell GT and Fisher S. Blood chemical changes in Boeck’s sarcoid, with particular reference to protein, calcium and phosphatase values. J. Clin Invest 18:687-693, 1939.2. Scadding G. Sarcoidosis. Eyre and Spottiswoode, London., 1967, pp. 193, 338, 340, 341, 346, 347, 348, 349, 352, 353, 354, 509.3. Barbour GL, Coburn JW, Slatopolosky E. Hypercalcemia in an anephric patient with sarcoidosis.Evidence for extrarenal generation of 1,25-dihydroxyvitamin D. N Engl J Med 305:440-443, 1981.4. JS, Sharma OP, Gacad MA, et al: Metabolism of 25-hydroxyvitamin D3 by cultured pulmonary macrophages in sarcoidosis. J Clin Invest 72:1856-1860, 1983.5. Selroos OBN: Biochemical markers in sarcoidosis. Crit Rev Clin Lab Sci 24:185-216, 1986.6. Nishimua M, Hara A, Nojima H, Mashimo M, Hori Y. Possible role of the hormonal form of vitamin D3 in the granuloma-associated angiotensin-converting enzyme activity. Sarcoidosis 1991 8:101-4.7. Basile JN, Liel Y, Shary J, et al: Increased calcium intake does not suppress circulating 1,25-dihydroxyvitamin D in normocalcemic patients with sarcoidosis. J Clin Invest 91:1396-1398, 1993.8. Sharma OP. Vitamin D, Calcium, and Sarcoidosis. Chest 109:535-539, 1996.9. Costabel U, Teschler H. Biochemical Changes in Sarcoidosis. Clinics in Chest Medicine 18:827-842, 1997.Reprinted by permission. Norman T. Soskel, MD http://www.sarcoidcenter.com The above questions are taken from Dr. Soskel’s site linking the online book entitled "Sarcoidosis" by Dr. Sharma.Ed. Note: A patient should consult with his or her personal physician before changing or considering any medical treatments or health related changes.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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