CraigR

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Posts posted by CraigR


  1. Hi,

     

    Sorry about the egg confusion.

     

    Are you taking anything for the Raynauds's? There are many different medications that might help - calcium channel blockers (nifedipine), Revatio (a smaller formulation of sildenifil - the same drug as viagra), nitroglycerine cream.

     

    Craig


  2. Unfortunately for most of us with autoimmune disease, it becomes necessary to do our own research. There are many horror stories of the diagnoses that so many have been through. These diseases are 1. too rare and ; 2. too unique to the individual for simple understanding. The doctors just aren't always aware.

     

    Thus, I would advise you to become familiar with test values, etc. You need to (sort of) become something of your own doctor regarding your illness.

     

    On another topic: You mentioned that you like to eat raw egg. I may be wrong, but I've heard that this can be a bad idea because eggs often contain bacteria that is killed by cooking.

     

    Craig


  3. I've had lung nodules. They were either cysts or "pulmonary adenoma" - which is some sort of benign cyst.

     

    I had bronchioscopies to remove the cysts. They go in with (the nose) a tube with a microscopic camera, find the cysts and burn them (cauterize)? On one occasion, a cyst was blocking part of the lung. This could result in infection.

     

    The procedure is not as bad as it sounds. They either put you out completely, or give you so much anti-anxiety meds that you don't mind.

     

    Craig


  4. Vitamin D and autoimmune thyroid diseases (AITHD). The prevalence of vitamin D deficiency was significantly higher in patients with AITDs compared with healthy individuals, as well as in patients with Hashimoto's thyroiditis compared to patients with non-AITDs. Kivity S. Cell Mol Immunol. 2011 Jan 31. (PubMed) (Also see: 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)


  5. I also take 400 mg. without side effects. This med is (usually) not associated with many side effects, other than a sight-related issue which is easy to monitor. I take several other meds, and only pain meds seem to have any bowel effect (constipation). Diet make this manageable.

     

    Craig


  6. Short-term and long-term outcomes of autoimmune pancreatitis (AIP). Most AIP patients treated with steroid had good short-term and long-term outcomes clinically, morphologically, and functionally. Hilar bile duct stenosis and elevated serum IgG4 levels were predictors of AIP relapse after steroid therapy. As some patients developed pancreatic stone formation or a malignancy during or after steroid therapy, AIP patients should be rigorously followed up. Takuma K. (PubMed) Eur J Gastroenterol Hepatol. 2011 Feb;23(2):146-52. (Also see: Pancreatitis)

     

    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. Thanks for the advice. Plenty of calls to make and letters to write come Monday.

     

    And there isn't any reason for the lawyer to drag it out, as the lawyer gets 25% capped at $6,000.

     

    I've found it sort of strange that the commercial insurer immediately granted the disability. They are usually tougher to deal with than the government when it comes to money.

     

    Thanks again,

     

    Craig


  8. I've been in the process of filing for SS disability for 18 months. My initial application as well as the appeal were denied without any medical consultation.

     

    My problems mainly focus on CREST scleroderma and Sjogren's syndrome, made much more serious by a bout with lymphoma 8 years ago (treatment, including an autologous stem cell transplant). Greatest difficulties are with pulmonary hypertension, extreme fatigue and myositis.

     

    I'm lucky to have private long-term disability, and the insurer had no difficulty finding me disabled and has been making payments.

     

    My problem is mainly concerning medical insurance. Currently I have COBRA, which ends in November. With SS disability I would be eligible for Medicare. I could get a private medical policy, but it obviously wouldn't cover pre-existing conditions and would likely be very expensive.

     

    My disability attorney came highly recommended, but, due to illness, had to transfer the case to a different attorney last Summer. This attorney was his previous partner.

     

    Since this time I haven't been able to contact the new attorney, nor has he made any attempt to contact me. When I tried to call him, I got a receptionist that put me through to voice mail - which turned out to be "full". I called back to mention this to the receptionist who told me that I would just have to try calling again when the voice mail wasn't full (incredible...).

     

    I'm wondering if I should try to get a new attorney or keep the one I have. A new attorney would likely restart the hearing process, extending the process.

     

    I even also sent a letter to my congressman with the request for explanation why the government can ignore statute law concerning scleroderma and Sjogren's, and quoted the law.

     

    Any suggestions on how I might find out if the attorney is getting anything done?

     

    Thanks,

     

    Craig


  9. Spleen tyrosine kinase (Syk) inhibition in the treatment of autoimmune, allergic and autoinflammatory diseases. Preclinical studies presented compelling evidence that Syk inhibition may have therapeutic value in the treatment of rheumatoid arthritis and other forms of arthritis, systemic lupus erythematosus, autoimmune cytopenias, and allergic and autoinflammatory diseases. Pamuk ON Arthritis Res Ther. 2010 Dec 17;12(6):222. (UnboundMedline) (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)


  10. Regarding needle phobia - isn't there a sublingual (absorbed under the tongue) version that doesn't go through the stomach?

     

    I understand pernicious anemia to be an autoimmune condition, from what I've read. Thus it wouldn't be surprising to see it in a case of scleroderma, since we often have the overlapping autoimmune conditions.

     

    There have been several articles about the high rate of vitamin D deficiency among scleroderma patients, with some conjecture that it mught be involved in causation.

     

    Good luck,

     

    Craig


  11. I went throught 6 months of chemotherapy with stem cell transplant for Burkitt's Lymphoma 8 years ago.

     

    I had projectile vomiting once - and was very careful to insist on a good dose of anti-nausea medication before the particular drug after that. There is very little notice before one of these episodes, unlike typical nausea.

     

    Chemo levels were, much, much higher than given for sclero or post-transplant treatment. Example: methotrexate treatment later requires "rescue" drug (leucovorin). Other than bone marrow, the immune system is largely wiped ought. To prevent infection, I took antibiotics, anti-virals and anti-fungal medication until white blood cell numbers rise to normal. In addition, it was necessary to avoid sources of infection - other people, animals (don't get near a cat box), dirt (avoid houseplants) and especially, don't eat anything that isn't cooked.

     

    I found the periods after the chemo worse than the treatment. As the effects become manifest, I had what I think of as "feeling like I'd been run over by a truck".

     

    I recall 2 GCSF drugs: "neupogen", used to stimulate the bone marrow to produce white blood cells and procrit to stimulate red cells. Neupogen may require pain medication when the bone marrow starts working. The pain is in the lower back.

     

    Craig


  12. A contrary view on esophageal symptoms-

     

    I've had CREST symptoms for 34 years - first Raynaud's with some ulceration, then telangiectasias, occasional calcium deposits and hardening of the skin on the fingers. Later, secondary Sjogren's and pulmonary hypertension.

     

    I've NEVER had heartburn in my life, nor any other sort of esophageal symptoms (knock on wood...). "CRST" would probably be a more correct diagnosis.

     

    Sooooo - this disease throws another curve. I wouldn't meet your doctor's requirements.

     

    To further complicate things, my father had CREST and he had trouble with heartburn.

     

    Craig


  13. Usefulness of Ultrasound (US) Imaging in Detecting Psoriatic Arthritis of Fingers and Toes in Patients with Psoriasis. US proved valuable in detecting joint and/or tendon abnormalities in the fingers and toes of patients with suspicious changes. The dermatologist should consider US to obtain an accurate assessment of suspicious findings. Clara De simone. Clinical and Developmental Immunology Volume 2011 (2011), Article ID 390726. (Hindawi) (Also see: Psoriatic 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)


  14. An analysis of clinical characteristics of autoimmune pancreatitis (AIP). AIP seems to be a systemic autoimmune disease rather than an isolated disorder, markedly overlapping with other autoimmune diseases. Definitive diagnosis can be improved by the detection of immune parameters and pathological examination. Wu LL. Zhonghua Nei Ke Za Zhi. 2010 Nov;49(11):943-946. (PubMed) (Also see: Pancreatitis)

     

    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. I've been dealing with Raynaud's for 34 years. And YES finger pain is a definite problem. The pain can be extreme when ulcerated. I've had to bandage fingers with ulcers, otherwise the slightest touch is extremely painful. They make fingertip bandages that work well.

     

    Even when not ulcerated, there can be more than normal pain on hitting the fingertips. With time, the pad on the fingertip tends to become thinner, which seems to increase sensitivity to pain.

     

    Craig


  16. I've taken Dilantin (phenytoin, an anti-convulsivant) for forty years, but it isn't a sclero medication. No noticeable side effects. Taken Evoxac (for Sjogren's) for about five years, Revatio for about 2 years, Tracleer (bosentan) for 4 years (both for pulmonary hypertension), as well as a very strong pain med for peripheral neuropathy. No side effects except constipation from pain med (typical for pain meds, but manageable with diet).

     

    Side effects can vary greatly among individuals. Some drugs have very predictable side effects which are easy to research. An example would be prednisone, a miraculous drug for relieving inflammation, but with potentially dangerous side effects.

     

    Craig


  17. Hydroxychloroquine: From Malaria to Autoimmunity. In recent years, antimalarials were shown to have various immunomodulatory effects, and currently have an established role in the management of rheumatic diseases, such as systemic lupus erythematosus and rheumatoid arthritis, skin diseases, and in the treatment of chronic Q fever. Ben-Zvi I. Clin Rev Allergy Immunol. 2011 Jan 8. (PubMed). (Also see: Autoimmunity and DMARDS)

     

    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. Karen,

     

    Do you know the specific figure for a part of the PFT known as "diffusion"? This particular part of the test is used to determine if your lungs are absorbing as much oxygen as they should.

     

    When I first noticed some shortness of breath, I was getting a great deal of exercise but noted that my wind wasn't what it should be. The first PFT did not include "diffusion", but only the lung capacities (gross capacity, speed of moving air, etc.). The figures were very high - 125% to 200%. Doctor told me that there was no problem. So on to the specialist, who told me that "supranormal" values can indicate disease (because the lungs are constantly stressed and tend to compensate when getting a lot of exercise.) Turned out I was right, and diffusion was 64% of expected. I wasn't absorbing the expected amount of oxygen.

     

    The point is that it was very difficult to get a correct diagnosis, since lung capacities were very high. "Diffusion" was the key.

     

    As others have mentioned, general testing for other causes might be wise. In particular, you may want try to get a Stress EKG.

     

    Regarding weight control: Before I went through treatment for cancer (a very effective way to lose weight!) (lymphoma) eight years ago, it had always been a struggle to maintain ideal weight (I could easily manage three helpings and a big dessert...). But afterward, the problem reversed,as autoimmune disease/scleroderma got worse (now I often take food home from restaurants, since I can't get a large meal down). Now I have to work to keep my weight up (nutrition drinks, etc.). The inflammation/myalgia/fatigue state tends to eliminate appetite. Perhaps it's a male thing, since we seem to need to eat a lot more. In our local scleroderma support group, their is one other male (to about 20 females), and we are both thin and must work to keep our weight up, while about 60% of the women are overweight.

     

    The most effective way for me to lose weight (back in the days when that was a concern) was to have a short fast. This seemed to reduce the cravings. However, I wouldn't recommend it without medical supervision.

     

    Good luck,

     

    Craig


  19. Atypical celiac disease in a patient with type 1 diabetes mellitus and Hashimoto's thyreoiditis. These investigations indicated atypical celiac disease with malabsorption, anemia and osteoporosis. Schreiber FS Dtsch Med Wochenschr. 2011 Jan;136(3):82-85. (PubMed). (Also see: Celiac 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 always been endlessly curious about how anything works, so I've always gotten something taken apart. I find that pain, illness tends to be forgotten during such activities. Trouble is, I make terrible messes and have no inclination to clean up. There are too many other projects beckoning...

    Main hobby for the past 30 years has been rebuilding pneumatic player pianos from the early twentieth century. But they make a terrible mess (about 10,000 parts that have been rotting and gathering dust for 90 years). I'm about to finish one that I've been working on for a few months, and I can finally see the surface of my dining room table! Always plenty to keep me busy, as I've accumulated 10 pianos over the years - 8 grands and two uprights in various states of repair. Fortunately I have a large walk-out basement.

     

    Also love gardening. Unfortunately I don't have the strength to do much of it, so the challenge has become communicating to hired help my wishes. Big into roses, which I like to propagate from cuttings, and fruit growing. Citrus and avocado trees are just getting big enough to bear fruit. I'm overwhelmed with lemons, limes and tangerines. Fortunately my dog loves tangerines! Also have a big garden of California native plants. This has become more popular because they require little or no water, and the water situation in the southwest isn't getting any better. There are so many beautiful native plants that take no care at all...

     

    Aside from taking your mind off of less pleasant things, hobbies also give a sense of continuity (what I plan to get done, next thing on the list, etc.) I can't imagine how people cope when they don't have interests like this. When I've been too sick for any of these hobbies, I must pile up some books to read for fear of being idle and getting depressed.

     

    One last thing (before the welcome end of this post...). Pets are a wonderful hobby, especially for people who live alone. Their needs also add structure to existence. Being "owned" by a dachshund keeps me on my toes (if, at times, just figuratively).

     

    Craig


  21. Cutting Edge Issues in Polymyositis. Activation of endoplasmic reticulum stress response due to muscle regeneration and inflammation but independent to MHC-1 up-regulation has been recently reported in patients with myositis. Ghirardello A. (PubMed) Clin Rev Allergy Immunol. 2010 Dec 30. (Also see: Polymyositis)

     

    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)


  22. Flu vaccine and autoimmune and/or inflammatory diseases. These data encourage to vaccine every year patients with systemic inflammatory and/or autoimmune diseases with influenza vaccine, particularly patients taking immunosuppressant drugs or having respiratory, cardiac or renal chronic diseases according to guidelines. Duchet-Niedziolka P. Presse Med. 2011 Jan 11. (UnboundMedline) (Also see: Vaccinations)

     

    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)


  23. Flu vaccine and autoimmune and/or inflammatory diseases. These data encourage to vaccine every year patients with systemic inflammatory and/or autoimmune diseases with influenza vaccine, particularly patients taking immunosuppressant drugs or having respiratory, cardiac or renal chronic diseases according to guidelines. Duchet-Niedziolka P. Presse Med. 2011 Jan 11. (UnboundMedline) (Also see: Vaccinations)

     

    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)


  24. Cutting Edge: The Etiology of Autoimmune Thyroid Diseases. Significant progress has been made in our understanding of the mechanisms leading to autoimmune thyroid diseases (AITD). For the first time, we are beginning to unravel these mechanisms at the molecular level. AITD, including Graves' disease (GD) and Hashimoto's thyroiditis (HT), are common autoimmune diseases affecting the thyroid. Eschler D.C. Clin Rev Allergy Immunol. 2011 Jan 14. (PubMed) (Also see: 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)