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CraigR

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Posts posted by CraigR


  1. Primary Thrombosis Prophylaxis in Antiphospholipid (aPL) Antibody-Positive Patients: Where Do We Stand? The protective effect of low-dose aspirin against incident thrombosis in patients with clinically significant aPL profiles is not supported by randomized controlled data. The effectiveness of hydroxychloroquine, statins, or their combination remains to be determined by well-designed randomized controlled trials. Barbhaiya M. (PubMed) Curr Rheumatol Rep. 2010 Nov 23. (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)


  2. Revatio is the drug sildenifil, exactly the same as Viagra. Ravatio is given in smaller doses.

     

    I take it for pulmonary hypertension, But I've also noticed less trouble with Raynauds. A member of our support group has been helped with serious skin problems arising from diffuse scleroderma.

     

    Nitroglycerin cream and calcium channel blockers have also been helpful for Raynauds.

     

    Good luck,

     

    Craig


  3. That is very strange that you can test positive for an autoantibody, but have a level that is below "normal". The presence of these autoantibodies is generally always considered abnormal. Could it be a different test, not for autoantibodies?

    Sounds like you may need some clarification from your doctor. Let us know what you find out.

     

    Good luck,

     

    Craig


  4. Immunomodulation of Autoimmune Arthritis by Herbal CAM (Complementary and Alternative Medicine). On the basis of the results obtained from animal models of rheumatoid arthritic (RA) as well as the delineation of multiple immunological and molecular targets of the indicated herbal products, we find Tea polyphenols, Celastrol, Triptolide, Curcumin, Boswellic acids, and HLXL as promising candidates for further preclinical and clinical trials in RA. S. H. Venkatesha. (Hindawi) Evidence-Based Complementary and Alternative Medicine Volume 2011, Article ID 986797. (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)


  5. I sent an earlier reply, but it may have gotten lost in cyberspace. I it's found, there may be duplication.

     

    I've had three RHC procedures for PH. My doctor indicated that this was the only way to get an accurate reading, and that the echo test was not reliable except to indicate that there might be a problem that required further testing.

     

    My case is somewhat similar, having had some symptoms for a few decades, with complications coming later.

     

    PH (like scleroderma!) is quite rare (my research says that a typical general practitioner or family practice physician may only see one case in a career), and (like scleroderma) is best handled by an expert, preferably an institution known for the field. It sounds like you are on the right track.

     

    Good luck,

     

    Craig


  6. I've gotten various offers. There's some sort of "medical coaching" or help through the insurance company. They basically seem to indicate that they are there to answer questions. I haven't used them. They sound very basic - would probably tell me to keep my hands warm (duh...).

     

    On one occasion I got a call to help me with my "congestive heart failure", which I don't have. They probably drew a false conclusion from pulmonary hypertension.

     

    They don't seem sneaky - but seemed meant more for patients who aren't researching common conditions.

     

    When we consider the importance of finding an expert, and how few doctors have experience with this disease, it seems unlikely that a telephone nurse would have anything to offer. At least that's how it seems to me...

     

    Craig


  7. Idiopathic inflammatory myopathies. The idiopathic inflammatory myopathies (IIM) encompass a heterogeneous group of rare disorders that present with acute, subacute, or chronic muscle weakness. Dimachkie MM. (PubMed) J Neuroimmunol. 2010 Nov 17. (Also see: Myopathy and Myositis)

     

    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. Cracking Spaces in Hashimoto Thyroiditis Are Lymphatic and Prelymphatic Vessels: A Gift of Immunohistochemistry for the Centenary of Hashimoto's Description. The cracking spaces shown by Hashimoto are mainly lymphatic vessels and represent a characteristic feature of autoimmune thyroid diseases. Di Tommaso L. (PubMed) Am J Surg Pathol. 2010 Dec (Also see: 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)


  9. As Shelley says, you must keep your entire body warm. Warming of hands or feet can be of little help if your body core is not warm. Thus, even with warm hands, a cold drink can cool you down and antagonize Raynauds. This is because the body naturally reduces circulation to the limbs when the core is cool (for everybody). It can be beneficial to become accustomed to keeping warmer than you might usually consider comfortable.

     

    As for medication, I have taken nifedepine at times during difficult periods. Once, when it was not enough, I added the old blood pressure medicine prazosin (mini-press). It works in a different way to increase circulation, and together the relief was increased.

     

    Other members have been helped by erectile disfunction drugs (viagra, cialis), as well as nitroglycerin cream. What works for some may not work for others.

     

    I have found it helpful to go to the doctor (rheumatologist) with a list of possible vasodilating drugs or treatments, with the insistence that the present therapy is inadequate and MUST be improved. That's your call - not the doctor's! The question is not "what do we do, doctor", but "what additional therapy are we going to add since the current therapy is not adequate? - what about these drugs?"

     

    A good doctor will like this approach. If a doctor admonishes you for "playing doctor", you need a new doctor!

     

    Some doctors are hesitant because vasodilators tend to lower blood pressure, which can lead to fainting/blackouts upon rising. You can monitor this with a blood pressure device that can be bought at any pharmacy. This may help with a doctor's concern.

     

    Best of Luck,

     

    Craig


  10. Clinical and laboratory characteristics of patients with sickle-cell and autoimmune/connective tissue diseases (CTD). Patients with sickle-cell disease who develop autoimmune connective tissue disorders can present with similar clinical manifestations and/or complications making them indistinguishable. Alkindi S. (PubMed) Rheumatol Int. 2010 Nov 28. (Also see: Connective Tissue 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)


  11. The autoimmune tautology. The autoimmune tautology refers to the fact that autoimmune diseases share several clinical signs and symptoms, physiopathologic mechanisms, and genetic factors and this fact indicates that they have a common origin. Anaya JM. Arthritis Res Ther. 2010 Nov 9. (Also see: What is 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)


  12. Stress and autoimmunity. Stress reduction interventions can have a positive therapeutic effect in autoimmune disease patients. McCray CJ. (PubMed) Immunol Allergy Clin North Am. 2011 Feb. (Also see: Stress and 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)


  13. Pregnancy and reproduction in autoimmune rheumatic diseases. Despite evidence for the important role of oestrogens in the aetiology and pathophysiology of chronic immune/inflammatory diseases, the previous view of an unequivocal beneficial effect of oestrogens on rheumatoid arthritis (RA) compared with a detrimental effect on Systemic Lupus Erythematosus (SLE) has to be reconsidered. Ostensen M. (PubMed) Rheumatology (Oxford). 2010 Nov 18. (Also see: Autoimmunity 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)


  14. The multiple faces of autoimmune-mediated bone loss. This review discusses current understanding of the mechanisms of autoimmune-mediated bone loss in view of new insight from two new fields of research: osteoimmunology, which analyzes the direct effect of immune cells on bone. Schett G. Nat Rev Endocrinol. 2010 Nov 2. (Also see: Osteoporosis)

     

    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)


  15. Something I forgot to mention:

     

    Doctors are often hesitant to prescribe vasodilators because they tend to lower blood pressure. Should this be a concern, there are blood pressure devices that are easy to operate and can be purchased at any drug store/pharmacy. The doctor might be more agreeable if you agree to monitor your blood pressure.

     

    Craig


  16. Amelia,

     

    No doubt you are aware that you need to get more blood flow to your fingers. Members of this forum have had success with various drugs: ED drugs(Viagra[Revatio], Cialis etc.); calcium channel blockers (Nifedipine, Adalat, etc.); Nitroglycerine cream; Prazosin (an old blood pressure medication) and other medications. Effectiveness is very mixed - what works for some doesn't work for others.

     

    I've had this problem off and on for over thirty years. At times I've found it necessary to do my own research to propose to doctors, who were often lacking in awareness of treating this problem (and not aware of how painful it can be!).

     

    Gloves are obviously helpful - for the warmth as well as the reduction in stress to the surface of your hands.

     

    Additionally, it is wise to keep up your body's core temperature. Since the body naturally tends to restrict circulation when the core temperature drops, you can get attacks even when you think your keeping your hands warm. For example, a big drink of a cold beverage might easily restrict your circulation.

     

    Stress to the hands is also bad. At my worst time, I was engaged in a hobby that included restringing grand pianos. A really bad sort of thing to do with Raynauds!

     

    Good Luck,

     

    Craig


  17. The liver is a common non-exocrine target in primary Sjögren's syndrome (1°SS): A retrospective review. Liver involvement is a common complication in 1°SS. Its presence correlates with systemic disease. We consider that this complication should be routinely sought in patients with 1°SS, especially when a positive anti-ENA or evidence of systemic inflammation is found. Mariana J Kaplan.(SpringerLink) BMC Gastroenterology, 200 Volume 2, Number 1, Pages 1-9. (Also see: Sjögren's Complications)

     

    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)


  18. Have you been tested for Sjogren's Syndrome? It can make swallowing more difficult. Also, it can make the fatigue/myalgia/myositis worse. I had slow-onset sclero for about twenty years when I got secondary Sjogren's. Those symptoms became much worse after that.

     

    Also, do you know how your inflammation indicators are doing (Sed Rate, CRP [c-reactive protein])? They can be very revealing of what's going on in your body. For me , these numbers are always high during fatigue/soreness episodes.

     

    A little more explanation: These tests indicate whether you have inflammation going on your body. However, they are "non-specific", which means that they don't tell you what's causing the inflammation. Thus, the inflammation could be from any number of things (influenza, cancer, arthritis, etc.) Awareness of inflammation can be very helpful with these diseases. Many of us can make a good guess of our sed rates by how we feel.

     

    Good luck.

     

    Craig


  19. Shelley is quite correct about this disease being diagnosed by symptoms. Your doctor is seriously jumping the gun!

     

    Scleroderma is so rare that most doctors may only see one or two cases in a lifetime. Even a rheumatologist may see fewer than ten. Thus they seldom rely on practical experience when dealing with the disease. Published examples of the disease are seldom useful because every case is different. I know about twenty scleroderma patients through a local support group, and no two have exactly the same symptoms! This why (in my opinion): 1. You must seek a scleroderma expert and: 2. You must "take over" the understanding of your disease. It usually isn't long before most of us realize that we know more about the disease than our doctor...

     

    Your autoimmune issues, whether benign or otherwise, will be mystifying. You may want to be aware of the specific autoantibodies (the self destructive antibodies in autoimmune disease) that your tests indicate so that you can be aware of vulnerabilities. But as Shelley mentions, many people test positive but don't develop the disease.

     

    I would suspect that you may have tested positive for the scl-70 antibody. It is said to be associated with some of the more severe cases of scleroderma and with potential lung involvement. I, however, test negative for scl-70, but have lung involvement. So, who knows?

     

    Good luck,

     

    Craig


  20. Summer,

     

    It's my understanding (and I am not a medical professional) that fibromyalgia does not show up on any routine blood tests. This is one of the reasons that, in the past many doctors considered it to be psychogenic (in the head).

     

    This can mean that if your inflammation indicators (Erythrocyte sedimentation rate [or ESR or "sed rate"] and c-reactive protein [or CRP]) are elevated during your bouts of pain, it would suggest that it isn't the fibromyalgia.

     

    Bear in mind that these indicators are "non-specific", meaning that inflammation may come from any number of things (e.g.- sclero, arthritis, influenza, cancer, etc.)

     

    I get bouts of severe muscle pain (myalgia) in my upper body (accompanied with fatigue), and my inflammation indicators are always elevated when this occurs. It is not fibromyalgia, but likely myalgia associated with scleroderma or Sjogren's syndrome.

     

    Knowledge of these indicators can be very enlightening. I can usually make a very good estimate of my sed rate based on how I feel.

     

     

    Good luck,

     

    Craig

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