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sclerster

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Posts posted by sclerster

  1. Hello Alex

    Your story is quite compelling. I, too have systemic scleroderma. Diagnosed in 2006 with skin scores of 35, March 2009 skin scores of 11. I believe the worst is over for me. I am a retired school principal, and now work in psychiatry.

     

    Grandparents from Hebrides and Ireland. It seems that people from the British Isles or whose ancestry is from that region suffer disproportionally from autoimmune diseases.

     

    One step I took to feel better was to start antidepressants and they have helped me greatly.

     

    Anyway, your courage and spirit are inspiring.

    Regards

    Sclerster

  2. hello amy, i live in massachusetts and have systemic scleroderma. but, i actually feel better than I have in a couple of years. i am much more flexable, stronger, energetic, than when 1st diagnosed. i participated in a clinical trial at Boston University Medical Center which involved 2 six hour infusions of rituxan spaced 4 weeks apart. the drug kills off your B cells which make up a large portion of your immune system. when the B cells grow back approx. 1 year. they do not have certain markers on them that trigger autoimmune responses. simple theory? anyway from what I have heard most of the 15 participants who took rituxan had good responses. i had no side effects.

     

    good luck doug wilson

  3. Hello Sadie, I work in a psychiatric unit of a full service hospital north

    of Boston. I have Diffuse Scleroderma diagnosed about 1 year ago.

    I am also a participant in a clinical trial using rituxin infusions that hopefully

    will provide some benefit to me and others who have scleroderma. The rituxin

    has totally destroyed my B lymphocyte cells which are major players in our

    immune systems. I won"t have them back fully until about August. The B

    cells are believed to carry the scleroderma markers that trigger the disease.

    Anyway, I checked with my doctors before my infusions about working in a

    hospital setting and they placed no restrictions on me. I hope this information

    may help you.

     

    Sclerster

  4. Hi Sakar,

    My name is Doug, I have Systemic Scleroderma diagnosed in May of 06.

    I live north of Boston, and treat at BU medical center. I believe you

    are correct, women have a much higher incidence of this disease.

    I hope all is well with you.

     

    Sclerster

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