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Posts posted by janey

  1. This is interesting. I'd like to see them review more than 10 patients. I've been on cellcept for more than 3 years and after a year, my forced vital capacity (FVC)increased from 45 to 60 and has remained stable. My diffusing capacity (DLCO) was at 49 in March 07 and it has stayed between 45 and 50, so no significant increase. So my personal results seem to echo the results of this study. Everything has been stable for about 2 years now. I'll take it.

  2. Nerve conduction studies (NCS) in patients with dermatomyositis (DM) or polymyositis (PM).


    Peripheral neuropathy in DM/PM often suggests a complication with cancer, other connective tissue diseases, diabetes or carpal tunnel syndrome. From a practical point of view, NCS for DM/PM may help find the underlying disorders. WANG Yue. Chinese Medical Journal 2010;123(5):523-526. (Also see: Dermatomyositis and Polymyositis)


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

  3. Point Pleasant’s Paulmenn is a survivor who now makes other patients’ dreams come true. (pdf link)


    Janet L. Paulmenn recognizes the need to help chronically ill children, as she herself has battled a serious disease. As she continued her own battle against diffuse scleroderma, Mrs. Paulmenn decided that she wanted to help others who were also fighting serious illness, and that choice led to a social gathering. This is a about Sclero Forums member "miocean." PDF file of newspaper; click on People or go to page 23. The Ocean Star. 07/23/10.


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

  4. Anti-Scl-70 (topo-I) antibodies (ATA) in Systemic Lupus Erythematosus (SLE): Myth or reality?


    Given that SLE is approximately 100 times more prevalent than systemic sclerosis (SSc), the number of ATA positive SLE patients is 2-3 orders of magnitude greater than the prevalence of ATA in SSc. M Mahler. Autoimmun Rev. 2010 Jun 22. (Also see: Autoantibodies to Lupus)


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

  5. Sharon,


    I too have problems sleeping, but I've narrowed "some" of the episodes down to the afternoon iced coffees (not really iced - room temperature. Can't handle cold stuff even in the heat.) Cutting caffeine off by 3 pm didn't work for me. I had to cut it off by noon, so you might try cutting your caffeine intake off earlier and see if that works. Also, exercising too late in the day can get me too hyper to sleep. I know how frustrating it is because it makes you so tired the next day, but I'm not willing to try sleep medication. I take enough meds as it is. A boring book works sometimes too. Hope you find something that works for you.

  6. An Oral Health Checklist for Scleroderma Patients.


    Patients with Scleroderma have oral health issues particular to the illness. The oral health issues will be life long. Long standing oral health conditions may become worse over time. Treatments may not be curative, and only improve the patient's condition. Dr. David Leader. Yahoo Heath and Wellness. July 22, 2010. (Also see: Dental/Mouth in Systemic Scleroderma)


    [/i]This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.

  7. Sis,

    I started IVIg (intravenous immune globulin) in the spring of 2004 (diagnosed in August 2003). I was started off at one 5 day treatment every 4 weeks, but have been at one 3 day treatment every 8 to 10 weeks for a couple of years now. (Whether it's 8, 9, or 10 weeks depends on my schedule and CPK levels (muscle enzymes). I was put on IVIg due to my polymyositis mainly, not the scleroderma, but I feel that it has helped both tremendously. It's the only thing that controls my muscle inflammation. (I've been on methotrexate, imuran, cyclophosphamide and now cellcept over the past 7 years). My current regimen is 2.5 g/days of cellcept and the IVIg. I had hard skin on my hands and fingers for about a year, but then it softened. I've never had joint pain so I'm not sure if the IVIg has helped with that or not. I do know that I don't suffer from pain as many do. The only side effects is a huge headache 24 hours after the 3 day infusion. It lasts exactly 24 hours, then goes away. It's weird because I can time it every time. Oh yes - another side effect - it makes me feel great! I am not fatigued and have more energy than before I started the treatments.

    IVIg is actually not a "medicine" as we know medicines. IVIg is an infusion of IgG antibodies extracted from thousands of blood donors per treatmetn. That's why it's so expensive. According to WebMD "IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus)." Of course this information hasn't helped me in knowing exactly why it works for me, except that maybe my mixed connective tissue disease is caused by bacterial or viral infection. I'm not a doctor, so that is a wild guess. I do know that, even though I've been immunosuppressed for 7 years, I don't get colds, bugs or any of those little 24 hour things that get passed around.

    The treatments themselves are painless (except for the stick or sticks) and can be boring. I always have a good book, my computer, and music. It can last 4 - 6 hours per session therefore, it really is some nice ME time. One thing to be very sure of - The infusion must start slow and be ramped up. Do NOT let them start you at full speed. I've read the protocol with my doctor and my infusion nurse. When they switched manufacturers last year, the nurse and I read the protocol together to make sure it was done right.

    I know it sounds scary, but it's not. More inconvenient because of the time involved, but because it makes me feel so good - it's worth it! I hope it works for you like it has worked for me. Please let us know how you with it. Be sure to check the link that Amanda gave you. there's some good information.

  8. Mary - Thanks for bringing the Talking Books program to our attention! What a great program. I've added it to our Patient Support Programs on the ISN disability page. I'm going to send the link to my dad. He has macular degeneration and requires large print books. He told me about a month ago that he has exhausted the large print books at his local library, so this will be a great source for him and for so many others.


    Thanks again!

  9. Margaret,

    I've hiked UP many of gorge in my day, but that is something I couldn't do now. So, in my mind, making it up the gorge 1/2 miles is GREAT! Unfortunately, he's probably been able to make it a lot further in the past. Glad you noticed the problems he was having with the heat and send him back to the car. I had a heat stroke as a kid and it wasn't fun.


    kkkl1941 - Welcome the Sclero forums! I'm with you. I do all of my running around in the morning and stay home in the cool house in the afternoons. I wish I had a pool to dip in, but that would mean getting in a car and a bathing suit - the latter of which is NOT going to happen nowadays! I'm not that crazy about the heat (anything over 85 degrees), but I dislike temperatures below 60 degrees worse. So if I ever buy a lottery ticket and win (I hear you have to actually buy a ticket to win) - I'll move some place where the temperatures stay between 60 and 85 year round.

  10. Erika,

    You interpreted the article right in the sense that half of the SSc patients in this study developed lung involvement (ILD specifically) during the first 9 years and the other half after 9 years. Apparently this isn't the first study that has indicated this. One of the studies in the ISN pulmonary fibrosis section states


    "Lung involvement had developed on an average of 113 +/- 106 months after the first manifestation of the disease and was apparent within the first year in 10 patients (16.7%), between 1 and 2 years in 3 patients (5%), between 2 and 3 years in 2 patients (3.3%), between 3 and 4 years in 5 patients (8.3%), between 4 and 10 years in 21 patients (35%), and after 10 years in 19 patients (31.7%). When the symptoms of lung involvement appeared, 37 patients (61.7%) were not receiving treatment while 23 (38.3%) were using an immunosuppressive agent." The natural course of progressive systemic sclerosis patients with interstitial lung involvement. (Pubmed)


    I love the tolerance of 106 months! That indicates a tremendous variability in the development of lung involvement. Just another case that demonstrates how unpredictable this disease is and how it affects everyone differently. It's no wonder why doctors have such a hard time diagnosing and treating it. There's no standard.

  11. Well, aren't we a scary bunch! What other group congratulates a very happy person about her surgery date?!?!?! I guess one has to know what it's like to live through years of digital ulcers as you have Lisa. I'm thrilled that something is finally getting done that is going to give you some relief. Congratulations on finally getting this scheduled. I know you want to watch the surgery, but maybe you should take advantage of this time and get some rest, something you don't get a whole lot. I'd go for the Twilight sleep.

  12. Study: Exercise, tea and vitamin D to ward off dementia.

    Improved living and diet habits — including lots of physical activity, regular tea-drinking and sufficient vitamin D levels — could reduce the risk of brain decline, according to three studies. USA Today. July 11, 2010 (Also see: Foods and Health and Vitamin D)

    This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.

  13. Staying healthy in summer heat.


    The elderly, people with chronic illness (including those with respiratory conditions), the homebound, those who work outside, and children under five years of age are most at risk. Here are some prevention tips to stay healthy in the summer heat. Doug Hartline, Health Officer. TheReddingPilot.com. 07/07/10. (Also see: Living with Chronic Illness)


    This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.

  14. Diabetics, Especially, Should Avoid The Heat.


    Sweating is an important means of cooling the body in hot weather, and past research has shown that the ability to sweat in the heat can be impaired in some patients with diabetes. Furthermore, heat can damage diabetes equipment, such as glucose monitoring devices and glucose monitoring strips, as well as medications, rendering them ineffective. Medical News Today.07/07/10. (Also see: Diabetes)


    This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.

  15. Researchers Point to Possible Scleroderma-Cancer Link.


    Patients with a certain type of scleroderma may get cancer and scleroderma simultaneously, Johns Hopkins researchers have found, suggesting that in some diseases, autoimmunity and cancer may be linked. Those with antibodies called anti-RNA polymerase I/III had the most closely related onset of cancer and scleroderma. EurekAlert! 06/08/10. (Also see: Scleroderma and Cancer and Antibodies)


    This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.

  16. I don't have a real problem holding a book, but when I was reading about Shelley's gadget (leave it to Shelley to come up with something like that) - I thought that "maybe" you could take a very large square scarf, fold it in half to form a triangle and tie the ends around your neck, chest or waist. You could then rest the book in your lap, resting against and being held up by the scarf. I have no idea if it would work - just a thought. If I can find a large scarf, I'll try it and let you know. Like the rest of you, I love to read. I just finished a book that took me to Venice for a few days. It was wonderful!

  17. Miocean,

    It's always good to hear that you are continually improving! It's thrilling! Glad to read that you are starting to get up and move around. What a great attitude. We all know, or should know, that a positive attitude is one of the best medicines.


    Even though half of my organs are worthless for donation, I have informed my family as well as indicated on my driver's license that I am an organ donor. You are so right - organ donation is extremely important (as you well know :VeryHappy: ), but right now, there are more people that need organs than the number of organs available.


    Thanks for the update!

  18. Hazel,

    Welcome to the Sclero Forums. I love that you found us and are headed to doing some trawling! If you are looking for something specific, be sure to use the search function. It does a great job is helping you navigate this site. We have over 1500 pages, so it's a lot to navigate, but well worth the time. Let us know if you can't find something specific and we'll get you there.


    Hope to learn more about you in future posts.

  19. Chronic Disease Expert: U.S. Health Care System Needs To Treat 'Whole Person'.


    The way a person can take control or manage a chronic illness is to first understand that most people live 99.9 percent of their lives outside of the health care system. So, they are responsible for managing the disease during that time, for making decisions [about exercise, eating, and activity]. Jessica Marcy. Kaiser Health News. 06/25/10. (Also see: Living with Chronic Illness)


    This item was posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.