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CraigR

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Everything posted by CraigR

  1. Vitamin D: modulator of the immune system. Several epidemiological studies have linked inadequate vitamin D levels to a higher susceptibility of immune-mediated disorders, including chronic infections and autoimmune diseases. Baeke F. (PubMed) Curr Opin Pharmacol. 2010 Aug;10(4):482-96. (Also see:Vitamin D and Autoimmunity) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. Craig Roothoff ISN Assistant News Guide International Scleroderma Network(ISN)
  2. Smoking habits influence pain and functional and psychiatric features in fibromyalgia. This study revealed that smoking habits may, in part, influence pain or functional and psychiatric features in FMS patients. Lee SS. (PubMed) Joint Bone Spine. 2010 Sep 16. (Also see: Fibromyalgia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. Craig Roothoff ISN Assistant News Guide International Scleroderma Network(ISN)
  3. Smoking habits influence pain and functional and psychiatric features in fibromyalgia. This study revealed that smoking habits may, in part, influence pain or functional and psychiatric features in FMS patients. Lee SS. (PubMed) Joint Bone Spine. 2010 Sep 16. (Also see: Fibromyalgia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. Craig Roothoff ISN Assistant News Guide International Scleroderma Network(ISN)
  4. Why, oh why does she keeping saying stuff?

    Hmmmmm. The doctor recommends that you not look at this website. What books would she ban? Craig
  5. Don't fit norm of CREST

    You are certainly on the right track by recognizing that there really isn't a "typical"! I have had scleroderma symptoms for over thirty years and have never had patches of hardened skin. Thickened skin is only around fingers and feet that have been effected by Raynauds (so no "progession"). Like you, no esophageal symptoms, but I have telangiectasias (red spots). Also developed secondary Sjogren's and pulmonary hypertension after many years. My father probably had CREST for 30 years before being diagnosed due to kidney and lung involvement. Unlike me, he had esophageal symptoms. For more than 20 years my siblings and I were told that he had "cold hands because he smoked" and digestive trouble because of a "hiatal hernia". From my experience with support group members, the diffuse type seems to come on quickly with obvious symptoms. The slow-onset (CREST) seems more slow and insidious (as with my father and I). I've yet to meet anyone who closely fits the typical scleroderma case that one reads about in texts. Good Luck, Craig
  6. Anyone?

    A fellow in our support group has had the best help with his hands from the drug Revatio, which is a smaller dosage of the exact same drug as Viagra (sildenifil). Much better for him than Procardia. As has been mentioned, your Prednisone dosage may be too low. When I had my first serious inflammation attack, I was put on a Prednisone regimen that started at 60 mg and reduced by 10 mg each day. A few hours after the 60 mg dose, I went from barely being able to lift my head from the pillow to sitting up in bed, planning a list of activities for the day. A seemingly miraculous change. However, when the dose was down to 30 mg, my symptoms returned. As Red has mentioned there are many dangers with this drug. It can effect your mood (it gave me a very short temper; my doctor said "oh that's just syeroid madness"). Some people have been known to get into a great desire to scrub down the entire house with a toothbrush. It was presumed to cause an avascular necrosis in my hip, which necessitated a complete hip replacement. These are reasons why most doctors want to get you off the drug as fast as possible. Craig
  7. Initial diagnosis of Scleroderma?

    Yes, many sclero patients have little skin involvement, especially with the slow-onset or "CREST" form. This was the case with my father and with me. Antibody tests can be confusing - suggestive but not thoroughly diagnostic. For instance, I am negative for scl-70, which is associated with lung complications, yet I have lung complications (?) If your symptoms are debilitating, you might want to see a sclero expert. The rareness of the disease, coupled with the uniqueness of each case makes it difficult for a doctor who isn't a specialist. Good luck, Craig
  8. The effects of alcohol and drug abuse on the skin. Skin changes associated with alcohol and drug abuse can be the earliest clinical manifestation of several disorders such as psoriasis, porphyria cutanea tarda, and hyperpigmentation. Liu SW. (PubMed) Clin Dermatol. 2010 Jul-Aug;28(4):391-9. (Also see: Psoriasis and Porphyria Cutanea Tarda) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. Craig Roothoff ISN Assistant News Guide International Scleroderma Network(ISN)
  9. Seizures and Scleroderma

    Seems a little odd that the doctor doesn't want to give you a diagnosis. Perhaps you need a new rheumatologist, preferably a scleroderma expert. It sounds like you have symptoms severe enough to warrant a diagnosis. It is also sort of strange how your insurance works, since they always seem to require a diagnosis (?). Regarding seizures, I have had grand mal seizures (very easily controlled) since age 15 (40 years ago). My first sclero symptom (Raynaud's) was 7 years later. Since my seizure diagnosis was always "idiopathic" (meaning that they could not find a cause), I have always suspected it to be related to sclero - possibly of some sort vascular cause, like Raynaud's. In addition, many years ago a found, in a book titled "The Aetiology of Epilepsy", I read a statement that there is a high concurrence of epilepsy with Raynaud's (meaning that Raynaud's patients have far more epilepsy than the the general population). In addition, my father, who also had slow-onset scleroderma, suffered from migraine headaches, which also have vascular causation, much like Raynaud's. I suspected a relation. Once again, more examples of how unique each case of this disease can be to the individual. Craig
  10. Mycophenolic acid in Rheumatology: mechanisms of action and severe adverse events. Mycophenolic acid (MPA) is an immunosuppressive agent, more and more extensively used in transplantation, rheumatology and nephrology. In this review, we will analyze the molecular mechanisms of its action. G. Zizzo. (PubMed) Reumatismo. 2010;62(2):91-100. (Also see: Mycophenolate mofetil (Cellcept)) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. Craig Roothoff ISN Assistant News Guide International Scleroderma Network(ISN)
  11. Stress and Rheumatoid Arthritis (RA). Stress is now recognised as an important risk factor for the onset and even more for the modulation of disease activity in RA. O.Malysheva. (SpringerLink) Zeitschrift für Rheumatologie, July 23, 2010. (Also see: Causes of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. Craig Roothoff ISN Assistant News Guide International Scleroderma Network(ISN)
  12. Treatment of primary Sjogren syndrome: A systematic review. In primary Sjögren syndrome, evidence from controlled trials suggests benefits for pilocarpine and cevimeline for sicca features and topical cyclosporine for moderate or severe dry eye. Anti–tumor necrosis factor agents have not shown clinical efficacy, and larger controlled trials are needed to establish the efficacy of rituximab. Manuel Ramos-Casals, MD, PhD. JAMA. 2010;304(4):452-460. (Also see: Treatments for Sjogren Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. Craig Roothoff ISN Assistant News Guide International Scleroderma Network(ISN)
  13. Have you discussed this with your doctor? Could be a nerve issue that could be related to many possible issues. I have had somewhat similar issues for a few decades and have found vitamin B6 seems to help somewhat. Good Luck Craig
  14. Advice for a new user please !

    Rob, Do you have a rheumatologist, with experience with sclero? This disease is quite rare, and every case tends to be different, so it's very hard for anyone but a specialist to truly understand it. You may want to ask your doctor about having your erythrocyte sedimention rate (ESR, sed rate) checked. This is a common blood test for inflammation. In my case, when I feel fatigue and generally bad, the rate is always elevated. I guess it all depends on how much research you want to do. Good luck, Craig
  15. Stem Cell Transplant

    I had a stem cell transplant (autologous, meaning your own stem cells, not a donor's) in January 2003. However, it was for lymphoma. I have sclero (CREST). It did not seem to affect the scleroderma, but mine is of slow onset, so not as seriously and immediately threatening. In my research, I found that the "protocol" for stem cell transplant (SCT) for sclero was only indicated when the disease was very serious (life threatening), because of the high risk involved (10 to 20% mortality). But that was seven years ago. Good luck, Craig
  16. So Many Questions!

    I'd have to agree with Amanda. Everybody seems to have their own version of the disease. My first symptoms (mainly Raynauds) were 33 years ago. Even though considered "limited", it has progressed with pulmonary hypertension. As for relationships (not something that I know about), also being in my mid fifties, it seems pretty rare for anyone at this age not to have something medical going on! Craig
  17. Anemia and Edema Problems

    Treating anemia ought to increase your energy and make it so you get out of breath less. I have chronic anemia that seemed to happen after a stem-cell transplant to treat cancer (lymphoma). The values never came back up to normal, regardless of nutrition. I take a drug called procrit, commonly used to treat anemia when treating cancer. I believe it has some sort of growth hormone effect with the production of red blood cells. With pulmonary hypertension, I can't afford to have anemia make me more breathless. Higher hemoglobin = more red blood cells to take oxygen to the tissues and more endurance and energy. Craig
  18. questions

    I would be surprised if you could find anyone with scleroderma who has NOT had "doctor issues" Ditto to the previous advice on seeing the sclero expert. Most other doctors are incredibly ignorant about the disease. They have rarely seen it, so they aren't aware of how different it can be from patient to patient. Like so many others, I've found that you must endeavor to be your own doctor (concerning researching your own disease), or you will be forever going every which way with underinformed doctors. Craig
  19. Social Security Disability

    Honey, Wow! you are blessed. I think my request and appeal have gone to a civil service worker that would rival General Patton! Can you move your arms? (Yes) Can you stand? (yes). Then you can't be disabled!!! Craig
  20. Right Heart Catheterization experiences

    I've had right heart catheterization 3 times (for PH). The first was not to long after chemo for lymphoma, which included a stem cell transplant. Needless to say, by then I was rather numb to all the procedures. Do what you will.... The worst part is the numbing with lidocaine at the start (as with any such procedure, there is a bit of a sting until the numbing effect takes place). The rest was very simple and easy. In fact, at one point I was so preoccupied carrying on a discussion with a nurse and the doctor told me stop talking or the test wouldn't come out right. Definitely not something to worry about (though I would want to be sure that the doctor/medical center has a lot of experience with the procedure). Craig
  21. Bloodwork results

    Good that you have been recommended to see a sclero specialist. It seems rare that anyone but the specialists understand this disease - especially how it can vary among individuals. It's not unlikely that your insurance company may fight you. I've always found that if you stick to your guns and get good recommendation from your doctor (insisting that this is the only effective course), they will usually give in. If you haven't already, you will have a blood test that checks for many signs of autoimmune disease - including antibodies for specific conditions. As Shelley mentions, these are not conclusive. But as you come to understand them, it is likely that some abnormalities will show up in an individual prone to autoimmune disease. With this disease, you really have to be your own doctor to a major extent (as, no doubt, you are discovering) Good Luck Craig
  22. Social Security Disability

    I hope you have better luck than me! I was denied initially, then appealed with a lawyer. The lawyer cited the statute law regarding scleroderma and Sjogrens. It was completely ignored. They basically told me that if I have two arms that work, I'm not disabled. My medical issues: Scleroderma with Raynaud's, pulmonary hypertension and extreme fatigue. Disease made much worse by a bout with Burkitt's lymphoma, mainly from heavy chemo that included an autologous stem cell transplant. Peripheral neuropathy in my feet Sjogren's syndrome For them ignore statute law regarding these diseases seems incredible. I figure this explains why there are so many TV and radio ads for disability lawyers. My experience is that it is the only way to get benefits. It takes a year or so, but you get a hearing before judge. I'm hoping a judge will follow the law... Good luck - but don't get discouraged if the going gets tough Craig
  23. Bloodwork results

    I would not be concerned with an ESR of 16 - in fact, I think up to 20 is considered normal for men. There is also the CRP test for inflammation (c-reactive protein). Having dealt with this particular number for so many years, I've gotten to where I can guess the value pretty close from how I feel. If it less than 25 (rare), I feel terrific. A value in the 40s is most common, what with sclero and Sjogren's. When it gets into the 70s, 80s or 90s, I do not feel like getting out of bed or chair. Rather like a bad case of the flu, but without respiratory problem or a fever. Thus I would jump for joy (and get a lot done...) if mine would go down to 16! Craig
  24. Male-only Systemic Lupus (SLE)

    This is an interesting bit of information. I have heard of studies suggesting a similar effect with scleroderma. I have sclero and so did my father (though none of the females in the family have any sort of autoimmiune disease). Thus I'm inclined to believe something genetic is going on... Craig
  25. Son with Scleroderma

    Sounds like a good endocrinologist might be helpful. Might be able to deal with possible issues mentioned by Shelley. I hope you have a good specialist dealing with the possible issues of his chromosonal abnormality. There is a chromosonal abnormality called Klinefelters Syndrome, where males have two or more X chromosones along with a (normal)single Y. It sounds like your son has something different. Nevertheless, I understand that there is increased occurrence of Autoimmune diseases with Klinefelters. Good Luck Craig
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