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CraigR

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Posts posted by CraigR


  1. Life expectancy, standardized mortality ratios and causes of death of six rheumatic diseases in Hong Kong, China. Patients with rheumatic diseases such as lupus (SLE) and systemic sclerosis have increased mortality and reduced life expectancy. Infection is the leading cause of death, followed by cardiovascular complications and malignancies. C. Mok, Arthritis & Rheumatism (PubMed) 2011 Mar 9. (Also see: Prognosis and Mortality)

     

    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. Antifungal medication is efficient in treatment of sarcoidosis The results suggest that antifungal treatment is as efficient as corticosteroid treatment against the granulomatous and inflammatory manifestations of sarcoidosis. Additional studies are required to define the phenotype, where the antifungal treatment was not efficient (4/22) and to perform long-term follow up to determine the risk of recurrence. Marjet Tercelj, Respiratory Disease, March 24, 2011. (Also see: Treating Sarcoidosis)

     

    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. Healthcare Costs of Inflammatory Myopathies. Our estimates suggest that the health services costs in inflammatory myopathies may equal, or exceed, those of other serious diseases, such as rheumatoid arthritis and systemic sclerosis. Sasha Bernatsky. The Journal of Rheumatology jrheum.101083. (Also see: Myopathies)

     

    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. Autoimmune hepatitis. Autoimmune hepatitis (AIH) is a chronic, progressive disease of the liver characterized by hypergammaglobulinemia, circulating autoantibodies. Sulz MC. Ther Umsch. 2011 Apr;68(4):189-194. (Also see: Hepatitis, Autoimmune)

     

    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. Apparently it helps to shop around!

     

    Years ago I had terrible trouble with my knee. My regular physician finally gave in to my request to see a specialist. After examining it for five minutes, the specialist asked when I could come in for surgery. That was thirteen years ago, and the knee has been great since surgery.

     

    (As mentioned in the earlier thread), I had painful calcifications in fingers surgically removed by a family practice physician. Though this didn't remove them 100%, they were no longer painful, which was all that mattered...

     

    Craig


  6. Years ago I hads trouble with these on my fingers. When they form near a nerve, the finger could not be used, since the slightest touch caused extreme pain.

     

    My doctor at the time, a family practice physician, operated and removed them. He would inject lidocaine at the base of the finger to numb pain, then cut into the finger with a tiny scissors-like tool to remove the calcium deposit. It worked very well.

     

    The healing process was somewhat painful. Due to this, I found it was best to only have one removed at a time (otherwise, too much pain).

     

    Good luck,

     

    Craig


  7. Peripheral nerve stimulation for fibromyalgia. In this chapter, the authors discuss the possibilities of using greater occipital nerve stimulation as a treatment for fibromyalgia, based on available clinical studies. [This nerve is located on the back of the head just above the neck area.] Plazier M. Prog Neurol Surg. 2011;24:133-46. (Also see: Fibromyalgia 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)


  8. Have you considered finding a scleroderma expert. Even though the disease is handled by rheumatologists, it is still so rare that an average rheumatologist may only see 5 or 6 cases in a lifetime, and the cases are usually so unique.

     

    I would re-emphasize becoming familiar with inflammation indicator blood tests. Even though non-specific, you can get some idea if there is an inflammation process going on with your symptoms, especially the pain (arthritis, myositis, etc will tend to show up in these tests). Conversely, fibromyalgia, which causes some people great pain, usually does not show up in any blood tests.

     

    Craig


  9. The only symptom that I notice you mention is pain. Do you have other symptoms? Pain can be all sorts of things. What kind of pain and where? Other symptoms?

     

    Unfortunately scleroderma is very difficult to diagnose, and can occur with other autoimmune conditions. Blood work may not be conclusive. Morphea can occur without systemic scleroderma.

     

    Do you know how the blood work for inflammation indicators(Sed Rate and CRP [c-reactive protein])is? If abnormal, it can indicate an inflammation process in your body, but is non-specific (could be caused by any number of things [flu, arthritis, etc]

     

    Getting a diagnosis can be very difficult. Unfortunately, most patients have difficulties like yours before finally getting a firm diagnosis.

     

    Good luck,

     

    Craig


  10. Paternal Exposure to Methotrexate and Pregnancy Outcomes. Based on our results and case reports in literature, paternal MTX exposure at the time of conception does not seem to raise any major concern for offspring. Delphine Beghin. The Journal of Rheumatology vol. 38 no. 4 628-632. (Also see: Medications and Pregnancy)

     

    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. Fatigue in psoriasis with arthritis. Patients have frequently described fatigue in association with chronic diseases, including cancer and a host of neurologic, metabolic, and psychiatric diseases. Carneiro C. Skinmed. (PubMed) 2011 Jan-Feb;9(1):34-7. (Also see: Fatigue and Psoriasis)

     

    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. Early Prediction of Increased Arterial Stiffness in Patients with Chronic Inflammation: A 15-year Followup Study of 108 Patients with Rheumatoid Arthritis (RA). Inflammation early in the RA disease course was associated with increased pulse-wave velocity (PWV) and augmentation index (AIx) after 15 years. These findings support the importance of early control of the inflammatory process in patients with RA. Sella A. Provan. The Journal of Rheumatology vol. 38 no. 4 606-612. (Also see: RA)

     

    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. Therapeutic Targeting of B Cells for Rheumatic Autoimmune Diseases. This article reviews the current knowledge of B-cell biology and pathogenesis as well as the modern therapeutic approaches for rheumatic autoimmune diseases focusing in particular on the targeting of B-cell-specific surface molecules and on the blocking of B-cell activation and survival. Engel P, Pharmacol Rev. 2011 Jan 18. (Also see: Causes of Scleroderma - B cells)

     

    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 need to see a scleroderma expert. These diseases are so rare that most doctors know little about them, and, additionally every case is different.

     

    It seems very strange that you could have so many symptoms and yet not have positive tests for autoimmune disease. That alone seems to be good reason to find another, more expert opinion.

     

    Good luck,

     

    Craig


  15. Pediatric Behçet’s Disease (BD) and Thromboses. Thromboses are a serious complication of BD and may occur early in the disease course. The presence of thrombophilic markers could increase the risk of thrombosis in BD, but the size of our population does not allow any conclusion. Brice Krupa. The Journal of Rheumatology February 1, 2011 vol. 38 no. 2 387-390. (Also see: Behcet's)


    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)


  16. Bistability in autoimmune diseases. We show how a triggering event may move the system from the healthy to the autoimmune state and how transient immunosuppressive treatment can move the system back to the healthy state. Rapin N Autoimmunity. 2011 Jan 19. (Also see: 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)


  17. Well, I contacted another lawyer about the case. Very friendly fellow. I told him about my situation with the other attorney and he was astonished - said that attorney was the top man in town for the issue and he would try to contact him.

     

    Ten minutes later the original attorney (that I couldn't seem to contact) called me to make an appointment for day after tomorrow.

     

    Lesson learned: take action to stir up the situation and get some action.

     

    Craig


  18. Long-lived autoreactive plasma cells drive persistent autoimmune inflammation. Long-lived plasma cells are not sufficiently eliminated by current therapies, these findings are extremely relevant to the development of novel concepts for the treatment of autoimmune diseases. Thus, long-lived plasma cells appear to be a promising new therapeutic target. Hiepe F Nat Rev Rheumatol. 2011 Feb 1. (Also see: Causes of 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. Prevalence of thyroid dysfunction and autoimmunity in pregnant women with gestational diabetes and diabetes type 1. The aim of the present study was to determine the prevalence of abnormal thyroid function and antithyroid antibodies during pregnancy in women with diabetes type 1 and gestational diabetes mellitus. Velkoska Nakova V. Prilozi. 2010 Dec;31(2):51-9. (Also see: Pregnancy and Autoimmunity and Pregnancy and 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. I've had three right heart catheterizations. I choose it over just about any trip to the dentist...

     

    The worst part is the little sting when the numbing med is given. Otherwise you just lie there.

     

    It might be a good idea to be sure that it is performed by someone who does it routinely, or through an institution that deals with pulmonary hypertension.

     

    Craig


  21. Thanks for the information. It seems that the "compassionate allowance" issue regarding scleroderma sounds like a rumor, since it doesn't appear on the list. The diseases listed are generally terminal within a year.

     

    Red - good luck with your appeal. My lawyer sent in my appeal, citing statute law regarding the illnesses (see Jeannie's post above). It was again denied, without so much as a consultation. That's with a history of sclero (slow onset), Sjogren's, pulmonary hypertension, myositis, all made worse by cancer treatment 8 years ago, difficulty walking (complete right hip replacement 6 years ago and peripheral neuropathy from cancer treatment[stem cell transplant]).

     

    I wrote a letter to my congressman regarding the issue of the Social Security administation's failure to abide by statute law. I got a return letter of a form to fill out and sign so that my information could be accessed (per privacy law). No more news yet.

     

    Imagine a private business operating like this!

     

    Craig


  22. Just for your information:

     

    Novo chloroquine is an anti-malarial drug. Some of these drugs are useful for autoimmune conditions. However, most common for this is hydrochloroquine. Many of us on the forum take this drug. It is also called plaquenil.

     

    Flexeril is a muscle relaxant and is likely for Raynaud's, unless your doctor has said otherwise.

     

    Adalat is a calcium channel blocker, and increases peripheral circulation, so definitely to help with Raynaud's.

     

    If your Raynaud's is not adequately relieved, you may want to discuss with your doctor the possibility of taking one of the erectile dysfunction drugs (viagra [revatio], cialis, etc.) Many have had good results from these drugs. Nitroglycerine cream can also be helpful.

     

    There is also an old blood pressure medication called prazosin (mini-press) that has helped some with Raynauds.

     

    Sometimes the doctor may be hesitant to prescribe these vasodilating drugs because they tend to decrease blood pressure, which can lead to fainting. This can be easily monitored with a blood pressure machine available at any pharmacy.

     

    Craig

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