janey

Members
  • Content count

    2,116
  • Joined

  • Last visited

Posts posted by janey


  1. Update on morphea: part I. Epidemiology, clinical presentation, and pathogenesis. The underlying pathogenesis of morphea is incompletely understood at this time, but ultimately results in an imbalance of collagen production and destruction. Fett N. J Am Acad Dermatol. 2011 Feb;64(2):217-28. (Also see: Morphea)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  2. Genetic errors linked to life-threatening pregnancy disorder.

     

    Scientists have identified genetic errors in women with autoimmune diseases that increase the risk of preeclampsia, a potentially life-threatening condition that occurs in 10 percent of all pregnancies. Media-Newswire.com. 03/29/11. (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.


  3. Lower IVF (in vitro fertilization) success in women of African origin linked to autoimmunity, suggests study.

     

    A genetic predisposition towards autoimmune disease may be associated with lower pregnancy rates in IVF, a US study suggests. The findings offer a possible explanation for differences in IVF treatment outcomes between different ethnic groups. Mehmet Fidanboylu. BioNews. 05/09/11. (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.


  4. The nonprofit International Scleroderma Network thanks Leticia Villalobos for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 05/25/11.

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  5. Lynn,

    I'm not familiar with this drug so I did a little research to see if there has been any trials with it and scleroderma. Apparently, there has. Check out the following:

     

    N-acetylcysteine infusion reduces the resistance index of renal artery in the early stage of systemic sclerosis. Acta Pharmacologica Sinica (2009) 30: 1283–1288.

     

    The treatment with N-acetylcysteine of Raynaud's phenomenon and ischemic ulcers therapy in sclerodermic patients: a prospective observational study of 50 patients. Clin Rheumatol. 2009 Dec;28(12):1379-84.

     

    Hope this helps.


  6. Lisa,

    It's so good to hear something from you even if a little bad is mixed in with the good. Well, we all know where Grace gets her inner strength. That's a no brainer. Just look at her mom,the maid, chef, taxi driver, master scheduler, dishwasher, and person that still finds time to be the mom! I would tell you to slow down and get rid of some of that stress but that would be like telling Grace to stay out of the pool. So I'll just say what I always say - You are amazing!!!!!!!!!!!!!! Thanks for catching us up on your crazy, crazy world. You always make me realize how easy my life is. :VeryHappy:


  7. Notch signalling regulates fibroblast activation and collagen release in systemic sclerosis (SSc).

     

    It was shown that Notch signalling is activated in SSc and plays an important role in fibroblast activation and collagen release. Inhibition of Notch signalling might be an effective strategy to selectively prevent the aberrant activation of SSc fibroblasts. Clara Dees, Ann. Rheum.Dis. 30 March 2011 (Also see: Fibroblasts)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  8. Scleroderma Overlap Syndrome.

     

    The definition of scleroderma overlap syndrome is important, especially in patients who need high dose corticosteroids for complications of a connective tissue disease (CTD). The use of novel biological therapies may be advocated in these patients to avoid the hazardous influences of high-dose steroids, especially renal crisis. Alexandra Balbir-Gurman MD, (PubMed) Isr Med Assoc J. 2011 Jan;13(1):14-20. (Also see: Scleroderma Overlap and Medications)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  9. The nonprofit International Scleroderma Network thanks Mary Keirns for tackling scleroderma and related illnesses through her recent comprehensive donation for research, support, education and awareness in memory of the tainted rapeseed oil victims in Spain (1981) and tainted L-Tryptophan. (Also see: Donate Now) Posted 05/26/11.

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  10. The nonprofit International Scleroderma Network thanks Eugenia Delgado for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 05/25/11.

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  11. Systemic Autoimmune Rheumatic Diseases (SARD) are different from most autoimmune diseases in that they affect many organs, cells or tissues simultaneously rather than just one. Examples of rheumatic diseases are systemic sclerosis (systemic scleroderma), lupus, rheumatoid arthritis, Sjögren's, dermatomyositis, and polymyositis. Examples of non-rheumatic diseases are diabetes, autoimmune hepatitis, autoimmune thyroid disease, and psoriasis. New Topic Posted 05/23/11.

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  12. Interferon and alternative activation of macrophage/monocytes in systemic sclerosis-associated pulmonary arterial hypertension.

     

    This study explores the relationship between biomarkers of pulmonary arterial hypertension (PAH), interferon-regulated gene expression and alternatively activated macrophages (AAM) in systemic sclerosis (SSc). Romy B. Christmann MD, PhD, Arthritis and Rheumatism, 18 MAR 2011. (Also see: Pulmonary Hypertension)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  13. When, and Why, Did Everyone Stop Eating Gluten?

     

    Although many autoimmune diseases are thought to result from an interplay of genetic and environmental components, celiac is the only one for which the environmental trigger is actually known. Diana Gitig. Scientific American. 05/10/11. (Also see: Celiac)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  14. Internal anal sphincter (IAS) atrophy in patients with systemic sclerosis (SSc).

     

    Patients with SSc (both symptomatic and asymptomatic) have thin and atrophic internal anal spincters (IAS), suggesting that IAS atrophy develops even in asymptomatic patients and this may be amenable to treatment with sacral neuromodulation. Nora M. Thoua, Rheumatology, April 18, 2011. (Also see: Bowel Incontinence)

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  15. Lida: Morphea Scleroderma (Colombia). When I became a patient, doctors looked at me like a weird case, and they did not allow my father to be present during the biopsy. While my parents could they took me to dermatologists, witch doctors and miraculous priests... Posted 05/20/11.

    (Español/Spanish) Lida: Morfea (Colombiana). Además, cuando ingresé los médicos me miraban como "bicho raro" y no dejaron ingresar a mi padre al stand ni a la toma de la biopsia. En fin, mientras mis padres pudieron me llevaron a control con el dermatólogo, con hierberos, sacerdotes que hacían milagros... Posted 05/20/11.

    There are over 1,000 patient and caregiver stories on the main Sclero.org site. Over 300 of these stories are featured in the Voices of Scleroderma book series.


  16. Dawn,

    Welcome to the sclero forums. I'm so glad to hear that you have been doing well for 17 years! Some significant things have happen with systemic scleroderma over that time as you may know. There are new drugs being used and even more being tested. A couple of sections you could explore are the ISN medications for scleroderma pages and the clinical trials for scleroderma pages. A few new immunosuppressants are being used and there are new symptoms specific drugs. For example, there are a lot more effective ways to treat Raynaud's than 17 years ago.

     

    I hope that you continue to do well and never have to worry about taking any of these drugs. I've only had scleroderma for about 8 years and I can't even count any more how many drugs I've been on. Some were effective and well handled, but then a couple of others, specifically immunosuppressants, were just more than I could handle. I'm now on Cellcept which I have handled quite well, so well in fact that my rheumatologist has slowly been reducing my dosage.

     

    Glad to have you join use Dawn. Your 17 years experience with sclero should be quite helpful to many of us.


  17. I live with a chronic cough (daily - on and off all day) and I would estimate about 75% of it is due to GERD. I do take Prevacid twice a day and that prevents heartburn and reflux, but I still get the cough. At times I have to take a chewable antiacid to get the cough to stop and that helps for a while. The cough is also a great indicator as to what I should and shouldn't be eating on my anti-GERD diet. I know when I have forgotten to take my prevacid on time (6 pm daily), because around 6:30 the cough starts reminding me to take my pill. I have to say at this point, it is one of the most bothersome symptom I have (the other being my shortness of breath). So therefore, I do consider myself lucky!


  18. Christine,

    Congratulations on the good news regarding heart, kidney and lungs! That's awesome! Since the results of your biopsy came back as morphea that could probably explain a lot of the symptoms you are experiencing (based on the information in the link that Jo provided). Normally morphea only affects the skin and the underlying muscles and joints. It is not systemic, therefore, internal organs are usually not affected. Since I do have systemic scleroderma, I can't relate to the feeling you have in your skin. It does sound painful. I hope you find some relief for it soon.

     

    Please take a look at our morphea section. There are pictures and personal stories from people that do have morphea. You might find some familiar symptoms. Let us know how the next biopsy turns out.


  19. Tamara,

     

    Welcome back Darlin! I'm sorry it is because of a new symptom. From the description you provided, you really need to see your doctor as soon as possible. Swelling to that extent and the development of streaks of blue and red is not something to take lightly, nor to wait and hope it goes away. There are many things that could cause this, some very minor, but others could be problems that need to be addressed immediately. So please make an appointment with your rheumatologist or primary care so they can see what is going on and direct you to the right place.

     

    Please let us know what you find out.