Jump to content
Sclero Forums

greypilgrim256

Members
  • Content Count

    75
  • Joined

  • Last visited

About greypilgrim256

  • Rank
    Senior Bronze Member

Profile Information

  • Location
    New Jersey
  1. greypilgrim256

    Help, How to get rid of fibrin?

    Has he been put on vasodillators or viagra to increase circulation?
  2. greypilgrim256

    Stem Cell Transplant

    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. greypilgrim256

    Resunab Clinical Trial. Anyone on it?

    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. greypilgrim256

    SCL-70 Positive-2.6 score: What does it mean?

    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. greypilgrim256

    Saw my scleroderma doctor yesterday and not good.

    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. greypilgrim256

    U3RNP

    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. greypilgrim256

    U3RNP

    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. greypilgrim256

    U3RNP

    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. greypilgrim256

    Use of hands and fingers

    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. greypilgrim256

    Use of hands and fingers

    Thanks for the replies. What exactly does the UVA1 therapy entail? How does it work?
  13. greypilgrim256

    Use of hands and fingers

    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. greypilgrim256

    Questions about PAH/PH (LFT, ECHO, ICD and rheumatology)

    Did you get your DLCO score?
  15. Hey Tully. Did you ever find out which scleroderma antibody type you have? Scl70? RNA III? U3RNP? Those are all associated with diffuse.
×