CraigR

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Posts posted by CraigR


  1. I've dealt with Raynaud's of varying severity for 35 years (can't believe it's been that long...). Sufferers seem to have different luck with different drugs. At a time when I was having severe trouble, Nifedipine helped, but was not enough, so Prazosin (minipress) was added. This is an older blood pressure medication that increases circulation in a different manner than calcium channel blockers (Nifedepine). The erectile dysfunction drug (Viagra [sildenifil], Cialis) have been very helpful for some, since they work on a principle of increasing circulation. Nitroglycerine cream has also been helpful.

     

    Possibly the best prevention is to keep the central core of the body warm. Since the body tends to cut off circulation to the limbs when cold for preservation, handwarming may be futile if you are otherwise cold. It might be wise to keep a little warmer than you find most comfortable.

     

    Your doctor might hesitate to give you these drugs because most lower blood pressure. A possible solution is to acquire a blood pressure testing device for home use (available at any pharmacy [chemist]). That way you can check the pressure yourself,

     

    Good luck,

     

    Craig


  2. Satoyoshi syndrome. Satoyoshi syndrome is a rare autoimmune disease characterized by alopecia, painful muscle spasms, diarrhea and secondary skeletal changes. Indian Pediatr. 2011 Sep 8;48(9):729-31.

     

    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. Implications of long-term medication of oral steroids and antimalarial drugs in primary Sjögren's syndrome. Lower levels of pro-inflammatory cytokines indicate a beneficial effect of oral steroids in this patient group. Int. Immunopharmacol. 2011 Sep 28. (Also see: Sjogren's Syndrome Treatments)

     

    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. Prevalence of autoimmune thyroid dysfunction in postpartum psychosis. Autoimmune thyroid dysfunction represents a potentially strong cause of postpartum psychosis. Therefore, screening for thyroperoxidase antibodies is warranted in patients with postpartum psychosis. Br J Psychiatry. 2011 Apr;198:264-8. (Also see: Pregnancy and Autoimmunity, and Hashimoto's Thyroiditis)

     

    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)


  5. Hi Kamlesh,

     

    This is a process which I have recently traveled and am very familiar.

    • What is the process? How to start the process? I believe I should start now and my short term disability should not matter for SSDI.

    Go to the website for SS Disabilty. There is guidance to the forms that can be printed off for your use. Since the form did not have enough space to fit my information, I constructed a separate document to fit all of the information. They were very pleased with this. The document asks for diagnoses, prescribed drugs, and, most importantly, a list of doctors and addresses, etc. to get hold of them. They will need this info to contact your doctors for copies of the records (doctors fill these requests all the time. Some may charge). You take this info to your local SS office.

    • How long it takes?

    It took me two years. It seems that the current atmosphere is deny everything, probably even quadruple amputees (after all, they can probably type with their nose...), probably because of the current financial atmosphere and government debt. After the first (likely) denial the next process is an appeal, followed by a court hearing.

    • Any tips to accelerate the process

    Get a good disability lawyer now, since the eventual hearing with the judge is likely the only way to get satisfaction.

    • What types of documents are required?

    See the website.

    • How to manage documents from several doctors

    You need only provide addresses, phone numbers, fax numbers and they will request the records, They, of course, want to get the records directly from doctors and not through you, since that might increase the likelihood of fraud. It's sort of like requests for college transcripts. There may be some idiosyncrasies in the ways different doctors handle this, but they can be handled easily.

     

     

    No doubt my tone is very negative based on my experience. Hopefully it will go better for you. It certainly was an education, and it helps to have a fighting disposition.

     

    Good luck,

     

    Craig


  6. The Effect Of Vitamin D On The Innate Immune Response In Arthritis. Vitamin D seems to act as one of the most important endogenous dowregulators of the innate immune response, at least in autoimmune rheumatic diseases. M. Cutolo. EULAR 2011 SP0204. Ann rheumatologist Dis 2011;70 (Suppl3):55. (Also see: Deficiencies of Vitamin D)

     

    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)


  7. Biological treatments and connective tissue disease associated interstitial lung disease (ILD). Although preexisting ILD is not a contraindication for these agents, until more information is available their administration should be stopped when new pulmonary symptoms occur. Panopoulos, Stylianos T., Current Opinion in Pulmonary Medicine: Sept. 2011, Vol. 17, Issue 5. (Also see: Biologic Agents)

     

    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)


  8. I have had lung nodules removed through bronchioscopy. They were found by CT ordered by my pulmonologist who treats my pulmonary hypertension. The treatment can improve breathing slightly if the nodule is blocking a section of the lung. There is also a risk of infection if the nodule is blocking the flow of air.

     

    Craig.


  9. My research shows Dynacirc to be a calcium channel blocker. A more commonly known similar drug is nifedepine.

     

    I've had Raynaud's with occasional ulcers for 34 years. I've used multiple medications during serious attacks, and none when ulcer free. What works for some doesn't work for others, so some trial may be wise, If you don't seem to be getting relief, you might suggest some of the others on the list to your doctor.

     

    It's hard not to over-emphasize to keep the core body temperature up especially with the overuse of air conditioning.

     

    The members of our support group (in the southern California area!) all mention that they wear jackets all the time because of the low temperatures inside so many buildings.

     

    Good luck,

    Craig


  10. I have peripheral neuropathy in my feet left over from chemotherapy for lymphoma. At best, the feet feel numb and at worst there is a burning sensation which is especially bothersome at night. I took gabapentin for a while and it did not seem to have any effect. However, a common strong narcotic pain medicine of the slow release type is very helpful.

     

    Craig


  11. The Longitudinal Outcome of Fibromyalgia: A Study of 1555 Patients. Although we found no average clinically meaningful improvement in symptom severity overall, 25% had at least moderate improvement of pain over time. Brian Walitt. Journal of Rheumatology. July 15, 2011. (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)


  12. Since prednisone is an anti-inflammatory, it may have been suppressing skin inflammation.

     

    You might try:

    Oatmeal baths (they have the ingredients at drugstores)

    Hydrocortisone anti-itch cream

    Anti-itch body powder.

    Ointment containing benzocaine

     

    The last item on the list works best for me, and it is available in "extra strength" version.

     

    Good luck,

     

    Craig


  13. Association between nail-fold capillary findings and disease activity in dermatomyositis (DM). Our results suggest that changes in nail-fold capillaries reflect disease activity in DM. Furthermore, the differences found in red blood cell velocity may reflect somewhat distinct microcirculation injuries in DM and SSc (Scleroderma). Naoki Mugii. Rheumatology (2011) 50 (6): 1091-1098. (Also see: DM and Nailfold Capillaroscopy)

     

    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)


  14. I agree with the others that you should see a scleroderma expert.

     

    From your post, it seems that there are issues that need clarification. First, if you haven't been given a scleroderma diagnosis, why are you on methotrexate? Is it the Sjogren's? but that sounds recently concluded. Don't forget that many medications can cause similar symptoms, or aggravate existing Sjogren's. Second, you mention that that tests are normal. It seems very odd that inflammation indicators (ESR, CRP) would be normal, considering your symptoms. If these tests are normal, a sclero expert should explain the situation.

     

    These diseases are very difficult to diagnose. Recently, a family member had iritis (eye inflammation), fatigue and joint pains. After a long process, ulcerative colitis was diagnosed. Another autoimmune disease.

     

    Craig


  15. I hate to be a bearer of possible bad news but-

     

    I was first diagnosed with Raynaud's 34 years ago, given the "CREST" diagnosis. For the first 20 years the only symptom was Raynaud's. Then I developed secondary Sjogren's, pulmonary hypertension and myositis, and 9 years ago, lymphoma. My father had a similar course of the disease (no lymphoma, but lung disease and kidney failure).

     

    Oddly, I have a negative SCL-70 and have never had gastric symptoms. So it's very difficult to tell. I knew a woman who lived to be 93, having been diagnosed with sclero for 49 years.

     

    Craig


  16. Risk factors for pregnancy failure in patients with anti-phospholipid syndrome treated with conventional therapies: a multicentre, case-control study. APS patients diagnosed on the basis of a single positive test and/or history of pregnancy morbidity alone were generally found to have successful pregnancies. Conclusion. It would seem from these findings that the risk of pregnancy failure in APS women planning to conceive can be stratified on the basis of some specific clinical and laboratory features. Ruffatti A. Rheumatology (Oxford). 2011 Jun 7. (Also see:Antiphospholipid 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)


  17. I had my hearing before a judge on June 15. The ruling was "completely favorable". Nice to have that out of the way.

     

    It's interesting that they focus directly on the ability to perform work, without much concern for diagnoses. The main point for me was that if I worked, I'd be spending a lot of time sleeping at my desk!

     

    It's also important that: 1. Your physicians agree with your complaints and: 2. There is a long, good faith work history.

     

    Craig


  18. Causes and management of infertility in systemic lupus erythematosus. Knowledge of how these reproductive problems occur and its prevention/treatment in SLE patients should avert irreversible infertility as well as give hope to SLE patients with infertility. Hickman RA. Rheumatology (Oxford). 2011 Jun 7. (Also see: Pregnancy 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)


  19. Maternal Autoimmune Thyroid Disease and the Fetal Immune System. The aim of this study was to identify immunological changes in children born to mothers with thyroid autoimmunity that may be related to in utero exposure to autoantibodies. Svensson J. (PubMed) Exp Clin Endocrinol Diabetes. 2011 Jun 10. (Also see: Autoimmune Thyroid Disease)

     

    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)


  20. Ann,

     

    The first thing that I would want to know is the values of my inflammation indicators (ESR [sed rate] and c reactive protein). These are very common blood tests. If positive, they might indicate an inflammatory process such as myositis or some other flare-up. These values tend to be negative with fibromyalgia.

     

    Bear in mind that these tests are "non-specific", which means they could be positive for anything that could cause inflammation (such as the flu). But they can provide good clues.

     

    Craig


  21. Autoimmune blistering diseases of the skin. In this review, the focus is on autoimmune bullous diseases with the skin as the major target which involve antigens of epidermis, basal membrane or dermis. Sticherling M. (PubMed) Autoimmun Rev. 2011 May 27. (Also see: Skin Diseases Similar to Scleroderma)

     

    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)