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Everything posted by janey

  1. janey

    IVIG Infusions

    Mollie, I've been doing IVIg infusions for 6.5 years. Originally, I was started on them because of my polymyositis (another connective tissue disease), not my scleroderma. Like you, I would feel great for 3 to 3.5 weeks, then started getting fatigued again. I was getting them every 4 weeks at the time. Once my bloodwork, specifically my CPK (an enzyme that is tracked for polymyositis) became normal, we started stretching the time between infusion out to 5 weeks, then 6 weeks and so on. The more infusions I received, the longer the period of non-fatigue I experienced. I am now at 10 weeks and have been for a year. I can go the entire 10 weeks without fatigue, so it's great!!!! We're hoping that next year I can stretch it out to every quarter, but that depends on my CPK. So far so good. Hopefully after a few infusions, the fatigue won't come to visit you between infusions. Like you, I do get the after infusion headache, but my isn't minor. It's pretty much a 24 hour migraine that comes exactly 24 hours after I'm unplugged and lasts exactly 24 hours, then I feel great for weeks! I hope the infusions help you as much as they have helped me! Please keep us informed on how you are doing and if you have other questions, please do not hesitate to ask.
  2. janey

    Baby, It's cold Outside!

    What are my secrets for cold weather? I stay inside as much as possible! When I do have to get out, the wonderful hubby goes and warms up my car about 5 minutes before I leave. I wear lots of layers. If it's windy and cold as it was today, I postpone my errands for another day, because my cold weather attitude says "There is nothing that can't wait until another day."
  3. Chronic disease requires action plan. Research found that people who learned how to solve problems, communicate with doctors, relax, eat well and manage their emotions improved their health and spent less time in the hospital than those who didn't. Barbara Quinn. NewsOK. 11/02/10. (Also see: Living with Chronic Illness) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. janey

    Nowhere to turn.

    That's GREAT NEWS Star! Thanks for letting us know. Positive thoughts for your sister's continued improvement.
  5. janey

    New here

    Sue, Welcome to the Sclero Forums! I'm sorry that you are starting to acquire some possible complications due to scleroderma. When you were diagnosed 3 years ago, did your doctor tell you what type of scleroderma - linear or systemic? Both types can affect the skin, but in different ways. At this point, I would definitely agree with the others and highly recommend that you see your doctor, preferably the one that diagnosed you in the first place. Bothersome symptoms such as what you are describing, should be seen by a doctor. We never know what's going on, but when something starts happening, the sooner it's taken care of, the better. Please let us know how you are doing and what your doctor tells you. Again welcome!
  6. Scleroderma Dramatically Under-Diagnosed With Commercial Screening Method. New research suggests that up to 40 percent of scleroderma patients will not be correctly diagnosed with the disorder using a new automated commercial screening test for detecting antibodies. PhyOrg.com. 11/08/10. (Also see: Difficult Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. janey

    Fatigue Issues

    Red, Your comments about the fatigue/tiredness in your upper legs, shoulder and neck sounded very familiar. That was a very prevalent symptom of mine as well. One of the initial bloodtests that my rheumatologist ran after I was diagnosed with scleroderma was a CK or CPK test. It is a test that measures the amount of muscle enyzmes in the blood that are caused by inflammation in the muscles. It is also an indication of polymyositis, - like scleroderma, a connective tissue disease. Scleroderma and polymyositis sometimes overlap. You might ask your doctor if your CK has been checked. It sounds like your symptoms might warrant it, but that's something for you and your doctor to discuss. Poly can also be the cause of a lot of your fatigue. I hope you find some solutions. We all know what you are going through and are here for you Darlin.
  8. janey

    No one knows what causes scleroderma?

    NorthStarHope, I think that most of us are frustrated and confused about them not knowing the cause or causes for scleroderma. As Shelley pointed out, the are several known causes and many more suspected triggers. Norrowing it down to just one to two is virtually impossible. Just like many other diseases like cancer, lupus and MS, specific causes are unknown. Some people carry specific genes that have been associated with certain diseases, but it could take an external trigger to make those genes active causing the person to actually get the disease. Without a trigger, the genes could exist, but the disease stay dormant. What the external triggers are that activate a gene can vary from person to person. So yes - it's quite frustrating, but progress is definitely being made. We now have new diagnostic tools that are helping our medical researchers get closer and closer to finding causes, penning down precise treatments and even possibly cures for many diseases. Hopefully, scleroderma is one of those diseases being researched.
  9. janey

    Scleroderma Australia

    Robyn, Welcome to the team! Sounds like you've been a busy volunteer in many ways for quite a few years. Thanks for taking on other tasks by being the Australian rep as well as a Sclero forums support specialist. We're thrilled to have you as part of the team.
  10. janey

    New Support Specialist Jo Frowde (Joelf)

    Jo, Thanks Girl! We're thrilled that you've joined the team and quite thankful as well. With all the traffic that this forum gets, our members need the support of wonderful people like you. Welcome, welcome, welcome!
  11. janey

    Be Positive!

    Be Positive! Positive mental well being is essential for our overall health. A lack of mental well being contributes to major health challenges. The Times of India. 10/19/10. (Also see: Emotional Adjustment) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. Images of Scleroderma. (75 images) ACR Criteria for the Diagnosis of Systemic Sclerosis: Preliminary Classification Criteria. Rheumatology Image Bank. 2010.(Also see: Scleroderma Photos) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Sleepiness Could Be in Our Genes. The researchers found that after several nights of restricted sleep, healthy adults who carried a particular gene variant called DQB1*0602 were sleepier and more fatigued during the day, and had more fragmented sleep, than non-carriers.Medical News Today. 10/27/10. (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.
  14. janey

    Bon hiver! (What makes you happy in winter?)

    Dear Enjoytheride, I love your do over! Being a city gal, I don't get to see how animals are in the winter other than cats and as we all know - cats don't really do anything different in the winter except become LESS active and sleep more. :rolleyes: So your descriptions of the goaties and horses were beautiful! You original was just pure honesty! When I read it, I was impressed that you are able to do it and admire you for getting out there and getting it done - no excuses. You're quite a gal as are all you sclerodoodles (as someone said) that have to work outside in the cold! More power to you!
  15. janey

    Bon hiver! (What makes you happy in winter?)

    I'm with Lynn - I too love snow, but unfortunately, it doesn't love me. Snow means cold temperatures which means difficulty breathing cold air. So like Jeannie, in the winter, I become a house hermit. The hubby runs most of the errands and I get out only if I have to. Thank goodness I live across the street from a beautiful park and have a view of the mountains, so I get to enjoy the snow without suffering from the effects of cold air. So what makes me happy in the winter? Cuddling up in my reading chair with a nice blanket, good book and my fluffy kitty, fires in the fireplace, hot soups, roast chicken, lots and lots of comfort food, taking naps in the sunroom, and best of all - snuggling with the hubby. Stay warm this winter everyone!
  16. janey

    Images of Scleroderma

    Yes - some of them can certainly be scary, but remember, that's each of us are different and most of us will never see some of the scarier pictures. I've had sclero for 7 years and nothing scary on the surface with this girl. I actually did use a picture of the hands to self-diagnose back in 2003. Pictures 2 and 10 could have been of my hands, so when I saw similar pictures as these and then read about other possible symptoms, I knew exactly what I had. On my first visit to the rheumatologist, it was confirmed. So I guess it's true - a picture is worth a thousand words!
  17. Lynda, Welcome to the Sclero Forums. I hope the responses you have received thus far have eased your anxiety. It's obvious that your doctor didn't handle it very well. As Shelley pointed out, it is very possible to carry the scleroderma antibodies, but not actually have or ever get scleroderma. The ANA is an indicator that an autoimmune disease "may" exist. Other antibodies as well as genes do the same thing (possible, but not definite) - it all depends on what is active and what isn't active in those little cells of yours. These things can exist but lay dormant indefinitely. I was diagnosed strictly on my symptoms and the rate at which the symptoms had progressed over a short 8 month period. My initial blood work did indicate a positive ANA, but no specific blood work for scleroderma was done until 3 years later. With that blood work I tested positive for mixed connective tissue disease (which I do have), but I didn't have any of the scleroderma specific antibodies, showing that blood work results can go both ways. Not everyone with scleroderma tests positive for scleroderma antibodies and vice versa. Please see a specialist if you have one in your area. If not, make sure that your rheumatologist has treated scleroderma patients. A doctor who is not familiar with scleroderma can go only by the book and as most of us with scleroderma know - scleroderma doesn't play by the book. Everyone is different and should therefore, be treated different. Please keep us informed on how you are doing and your appointments with the rheumatologist. In the meantime, take a deep breath and move forward - Have fun and laughed a lot!
  18. PH (Pulmonary Hypertension) and Scleroderma. In scleroderma, 10–15% of patients have evidence of pulmonary arterial hypertension and another 10–15% of patients have pulmonary hypertension as a complication of interstitial lung disease and/or left ventricular dysfunction. Pulmonary Hypertension Society. 2010. (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.
  19. O.K. - I admit it. I have a tattoo! I had wanted to get one since I was 18, a long, long time ago. But since I knew it was permanent, I wanted to really think about it, not only whether it was worth it or not, but what and where. So I waited until I was 40. Obviously, I don't make quick decisions. :) I love my tattoo and am glad I got it. I would love to have another one, but scleroderma made that decision for me. There is no way!!!!!! Great new topic Shelley!
  20. janey

    for all of us

    Patty, I had never heard of the story. I Googled it and what a great story! Thanks! Now when I get called a crack pot, I'll say THANKS! -:)
  21. What perfect timing! Boy - do I need a hug today, so I accept and return many hugs in return. (((((((((((((((((((((HUGS))))))))))))))))))))
  22. What activities can help people with joint pain? Increased motion can benefit many of those suffering from several types of arthritis including osteoarthritis and rheumatoid arthritis – as well as other autoimmune diseases such as fibromyalgia and ankylosing spondylitis. Dr. Eleanor Fish. The Globe and Mail. 10/11/10. (Also see: Managing Pain) [/i]This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. Doctors search for answer for incurable autoimmune disease. Experts say scleroderma may be caused by a combination of two distinct elements. Environmental factors, and the wiring of one's own immune system play roles, but the question is, how. Doctor Mayes and the UT Health Science Center at Houston still need more gene samples for their study. Maureen McFadden. WNDU.com. 10/12/10. (Also see: Causes of Scleroderma) [/i]This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. janey

    11 hospital visits in two months!

    North Star, I am so sorry to read about the struggles of your sister. Please know that she is in our thoughts. We hope that she is receiving the best care possible and has found a doctor that truly knows and understands what she is dealing with and can help her get the best medical care possible. If not, then please keep looking until you find one. Lots of hugs to you and your entire family. I know how hard this is on everyone.
  25. janey


    Jeni, I was put on methotrexate (MTX) the day after diagnosis. It's an immunosuppressant so its purpose was to slow the progression of the disease. I was not prescribed it due to any one symptom. It worked for me, and I was on it for 3 years, quite successfully. It definitely slowed the disease's progression! After 3 years I was diagnosed with mild pulmonary fibrosis, so I had to come off it and put on different drugs.