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greypilgrim256

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Everything posted by greypilgrim256

  1. Has he been put on vasodillators or viagra to increase circulation?
  2. HSCT is the ONLY treatment to date that has shown to put the disease into remission. It is a somewhat risky procedure that is only being run under clinical trials in the US, particuarly under Dr. Richard Burt at Northwestern Memorial in Chicago. I went for an evaluation, but he said my disease is currently stable under my treatment, but it if progresses I am welcome to come back. You must be "sick enough" but not "too sick" there is extensive testing done for your heart to assess if it strong enough.
  3. It is an interesting drug. The easiest analogy is that of dominos. If you can block one of the dominoes from falling, it will stop the end process, fibrosis. I was not able to get into the Phase II trial, but if it moves to Phase III I plan on asking my scleroderma specialist if I am eligible. Was hoping there may be some members here that were in the trial with some feed back.
  4. Hello all. Just wondering if anyone is currently on the Resunab clinical trial. It is in Phase II for scleroderma.
  5. R.I.P. to a fellow New Jersey-ite and scleroderma warrior. I had a lengthy conversation with her when I first was diagnosed.
  6. The SCL70 is likely a false positive especially with that low number. A negative ANA by IFA, with no Raynauds and no Skin thickening essentially rules out a diagnosis of scleroderma.
  7. Hi quiltfairy. Sorry about your recent complications. Can you explain more about your fingernails. I occasionally get these little black lines that look like splinters under my finger nails. Is that what you are talking about or are they different than that?
  8. Aodom, you should really do your best to try to get to a Scleroderma specialist. Regular rheumys just don't cut it with this disease. It does sound like your case is fairly mild right now considering you don't have a lot of skin involvement. How much swelling are you tallking about? Your fingers or your whole hands? Keep in mind scleroderma doctors consider swelling to the be same as skin thickening as swelling may precede skin fibrosis by years.
  9. The stress fractures and back pain really doesn't sound like it would be scleroderma related. Joint pains in your knees, ankles, hands, etc are the initial pains associated with scleroderma/connective tissue diseases and arthralgia. Do you have Raynauds in your fingers or toes? Hand swelling is a very early symptom.
  10. Hi Aodom, I also have the U3RNP antibody. It is a very rare antibody with scleroderma. My symptoms were similar to yours except I had a lot of joint pain. I have been on Methotrexate for over a year and feeling much better. There are only 3 antibodies that have a Nucleolar pattern. U3RNP, Th/To, and PM/Scl.
  11. Thanks. I'll speak to my sclero specialist next week when I see her. Is there anyone here that has personal experience with UVA1 therapy that can share their experiences, positive or negative with it and what it entails?
  12. Thanks for the replies. What exactly does the UVA1 therapy entail? How does it work?
  13. Hello all. I know this disease is highly variable for each person, but how long did it take to severely affect your hands to the point where you couldn't effectively do everyday things? This will be about 2.5 years since my first symptoms and my fingers are still very stiff, but I can still move them and type with no problem. Wondering if anyone went from full functionality to contractures or disability of hands over a long period of time or was it a sudden onset?
  14. Hey Tully. Did you ever find out which scleroderma antibody type you have? Scl70? RNA III? U3RNP? Those are all associated with diffuse.
  15. Hi Joelf, I read your story back from 2009. Are you still on steroids? They really are like the miracle drug. I am down to 3mg per day but can't seem to go lower. My joints in my left hand howl with pain when I do.
  16. Hi Kim. Did your ANA come back positive at all? Not the sclero antibodies, but the ANA? I also noticed you weren't tested for the U3RNP antibody and the Th/To antibody.
  17. Unfortunately, scleroderma does not have any reliable biomarkers. Antibodies are a clue, but they do not give the whole picture. Scleroderma is diagnosed on presentation, not antibodies. Antibody levels and titers do not correlate to disease activity, which is one of the reasons this disease is so difficult to manage and track.
  18. I was only diagnosed a year ago, and while I seem to be doing pretty well (on 17.5mg methotrexate a week) I still feel changes going on. Just looking to see if there were any younger folks here that have been diagnosed and how they are doing. I am scheduled to go to Chicago for an appointment with Dr. Burt for a Stem Cell Transplant evaluation in June. My skin score has gone lower and is I think a 9 or 10 (thankfully) and I am still pretty active and am definitely doing better than I was a year ago. Hands are still stiff but loosen up at night. As far as I know I don't have any serious organ involvement but I'm sure I will get every test under the sun in Chicago to determine where I stand. Just looking for some advice on how to deal with all of this. Not easy going from a very fit 33 year old guy to facing a potentially life threatening disease with no known cause or cure.
  19. I have been reading about Resunab for a while now. I am keeping my fingers crossed.
  20. This is a new article I found about people that are "middle of the road", I think this is probably where I fit in. Here's a link to the article "Overlap in Scleroderma" in the News Forum.
  21. My understanding is that plaquenil is a very mild medication and doesn't exactly suppress the immune system. It is more an immune system regulator. It is a very widely prescribed medication and considered critical for long term use in patients with connective tissue diseases.
  22. Lizzie, there is a good chance it is the U3RNP antibody with the nuceloar pattern. It is not a commercially available antibody to test for and has to be sent to special labs. That is what I have. Only 3 antibodies produce a pure nucleolar pattern.
  23. How many years ago was that Amanda if you don't mind me asking? Do you happen to know what antibody type you have?
  24. Thanks for the input everyone. Lizzie, do you happen to know what antibody type you have with the nucleolar pattern? Have you ever had "tendon friction rubs" at any of your joints?
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