janey

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Posts posted by janey


  1. A Study of the Safety and Tolerability of MEDI-551 in Scleroderma.

     

    The primary objective of this study is to evaluate the safety and tolerability of intravenously administered MEDI-551 over escalating single doses in adult subjects with Scleroderma. Identifier NCT00946699. Clinicaltrials.gov. This study is currently recruiting participants. (Also see: Clinical Trials)

     

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


  2. Ultrasound finds source of pain.

     

    “Our new ultrasound system produces a much higher resolution image,” he said. “Therefore, we can get a clearer image of what’s causing the pain, isolate the location, and pinpoint any injections so the treatment is even more effective.” BDN Connection. Beloit Daily News. 06/06/11. (Also see: Pain)

     

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


  3. EULAR 2011 - Vidofludimus Superior to Cyclophosphamide (CYC) and MMF (cellcept) in an Experimental Systemic Lupus Erythematosus (SLE) Model.

     

    Vidofludimus was as effective as CYC and MMF in inhibiting progression parameters of renal disease. Furthermore, vidofludimus improved activity and chronicity indices, markers of renal inflammation. Business Wire. 05/27/11. (Also see: Lupus)

     

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


  4. Margaret,

    My doctors have insisted that I keep up with my vaccinations and ensure that I do. When my husband saw a new primary that other, he mentioned my diseases and the doctor said that HE should have all of his vaccinations up to date as well in order to prevent infecting me. So the hubby too received a Pertussin Tetanus shot. In fact, the doctor said that pertusis or whooping cough is on the rise. Better to be safe than sorry!


  5. Tammy,

    I water my garden every morning so I do know what you are going through. I did exactly what Chopper suggested and switched to a wide metal nozzle that I don't have to squeeze. I also wear gloves which keep my hands, joints and muscles warm. I don't get the cramping that you do, but I use to. Hand exercises do help me in many ways. Please check out our section on Hand and Joint Involvement. There are two articles one from the Mayo Clinic and one from WebMD that provide a bunch of hand exercises for people with arthritis. I highly recommend them!

     

    Keep do whatever you can, but when you need help, please do not hesitate to ask for it.


  6. Jeannie,

    WE MISS YOU TOO!!!!!! :crying: I knew you had a very interesting "vacation", but GOOD GRIEF! What a trip! So glad that you are feeling well enough to post and let us all know what is going on with you. Sorry that you are still not back to the health you were at before the trip, but as we all know, our recovery periods are 10 times (or more) those of a healthy person. So you take care of yourself. Keep getting whatever rest you need and we'll all just continue to hold down the fort while you're recovering. I want your book list when you get back because I'm assuming you are doing a lot of reading done.


  7. Patients with systemic inflammatory and autoimmune diseases are at risk of vaccine-preventable illnesses.

     

    Vaccine coverage against tetanus, diphtheria and poliomyelitis is low in patients with SIAD despite the risk in this population of severe infection, especially when receiving immunosuppressants. A significant proportion of them had no humoral immunity against diphtheria or tetanus. Specific immunization schedules need to be optimized in these patients. Cecile Marchand-Janssen. Rheumatology (2011) 50 (6): 1099-1105. (Also see: Vaccinations)

     

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


  8. The nonprofit International Scleroderma Network thanks Carol Miller for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. These stretchy, one size fits all bands say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 06/19/11.

     

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


  9. Fish Oil May Have Positive Effects On Mood, Alcohol Craving, New Study Shows.

     

    Omega 3 fatty acids may be beneficial for more than just the heart. Research showed that at a molecular level, there is a potential therapeutic benefit between these dietary supplements, alcohol abuse and psychiatric disorders. Medical News Today. 05/25/11. (Also see: Supplements)

     

    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 Jennifer Gutierrez 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, and are a must for sclero fashinistas everywhere! (Also see: Donate Now) Posted 06/18/11.

     

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


  11. Prevalence and correlates of sleep disturbance in systemic sclerosis—results from the UCLA scleroderma quality of life study.

    Sleep disturbances are common in SSc and are associated with worsening dyspnoea, depressed mood and severity of reflux symptoms. Tracy Frech. Rheumatology (2011) 50(7): 1280-1287. (Also see: Sleep Disorders)

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


  12. Rheumatoid Arthritis May Double Risk of COPD.

     

    The link between rheumatoid arthritis, or RA, and the breathing disorder was evident even when factors such as smoking, age, obesity and gender were controlled for. (HealthDay) U.S. News Health. 05/27/11. (Also see: Rheumatoid Arthritis)

     

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


  13. ISN Welcomes Jo Frowde: ISN Assistant News Guide.

     

    Jo is also an ISN Sclero Forums Support Specialist, and an ISN Chat Host. She began training as an ISN Assistant News Guide in June 2011. She will be posting items from the ISN newsroom to Sclero Forums and hopes to expand her involvement from there. Posted 06/14/11.

     

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


  14. Dear Mom,

    I'm so sorry to read what your daughter and you are having to go through. Having health problems and not having any answers is so very frustrating. It appears that you have seen the right type of physicians that could be able to provide answers. Sorry that hasn't been the case. The swallowing problems and the hands sound familiar, but the rest I haven't experienced personally. We do have a section on Juvenile Scleroderma. You might want to look through some of the articles and see if you can find any answers.

     

    Please continue to seek for answers. Don't let the doctors brush you off. Keep good notes on symptoms, changes in symptoms and any information that might help with a diagnosis. There are many diseases, including scleroderma, that are hard to diagnosis - so keep searching.

     

    Please stay in touch and let us know how you and your daughter are doing. I hope you find out what's going on very soon.


  15. OSU Study explains health benefits of green tea.

     

    One of the beneficial compounds found in green tea has a powerful ability to increase the number of “regulatory T cells” that play a key role in immune function and suppression of autoimmune disease. David Stauth, OSU News & Communications. (KCAL.com) 06/06/11. (Also see: Food Guide and T Cells)

     

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


  16. Foot health needs in people with systemic sclerosis: an audit of foot health care provision.

     

    Foot health care and information are inadequate for people with SSc and foot problems, and preventative information is almost non-existent. Improved foot health information will better empower patients to self-manage low risk problems, and help identify high risk problems which require specialist care. Alcacer-Pitarch B. (PubMed) Clin Rheumatol. 2011 Jun 10. (Also see: Skeletal Involvement)

     

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


  17. I've been on Cellcept (3 grams/day) since spring of 2007. I was switched to cellcept after having a bad reaction to oral cytoxan. Since I started on cellcept my lungs have become stable. In 2009 my rheumatologist reduced the cellcept to 2 grams/day and just 2 weeks ago, I got to drop another 500 mgrams. Nothing new has happen sinced cellcept, everything is stable and some things have gotten a little better. To date I have absolutely no bad side effects (that I know of). I've been on 4 different immunosuppressants and I've tolerated cellcept better than any of them.

     

    That's my story. Good luck in whatever decision you make.


  18. Lynn,

    Ditto to EVERYTHING that has already been said. But most importantly - doctors who predict how much time you have left have been proven wrong over and over again. With your positive attitude, healthy fun living (that's possible you know :)) and lots of social interaction with family and friends, you might just prove another doctor wrong and out live us all. I will certainly keep my fingers crossed for you Darlin!

     

    Lots and lots of hugs (((((((((((((((HUGS))))))))))))))))))))


  19. Association Study of ITGAM, ITGAX, and CD58 Autoimmune Risk Loci in Systemic Sclerosis (SSc): Results from 2 Large European Caucasian Cohorts. These results obtained through 2 large cohorts of SSc patients of European Caucasian ancestry do not support the implication of ITGAM, ITGAX, and CD58 genes in the genetic susceptibility of SSc, although they were recently identified as autoimmune disease risk genes. Coustet B J Rheumatol. 2011 Mar 1. (Also see: Genetics)

     

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