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greypilgrim256

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Posts posted by greypilgrim256


  1. 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. 


  2. 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.


  3. 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.   


  4. 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.


  5. 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.  


  6. 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?  


  7. 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.  


  8. 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.

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