Discussions By Condition: Rare Disases

HTLV-I myelopathy

Posted In: Rare Disases 5 Replies
  • Posted By: nikeskittles
  • October 21, 2008
  • 01:40 AM

Hello,
My name is Jamila. Im 21 years old. I have HTLV-I myelopathy. For the past 4 years I have been on prednisone and azathioprine. However, recently Ive been suddenly loosing the little strength I had. And an increase in the medications seen mot to be helping at all. I was wondering what other medication would you recommend to replace prednisone? Is there another medications out there that could help me? Please let me know. I would really appreciate it. Thank you.
Jamila

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5 Replies:

  • Hello,My name is Jamila. Im 21 years old. I have HTLV-I myelopathy. For the past 4 years I have been on prednisone and azathioprine. However, recently Ive been suddenly loosing the little strength I had. And an increase in the medications seen mot to be helping at all. I was wondering what other medication would you recommend to replace prednisone? Is there another medications out there that could help me? Please let me know. I would really appreciate it. Thank you.JamilaHi Jamila, my name is Kathy I have had this disease for 15yrs besides physical therapy to help strengthen the muscels, unfortunately there is nothing out there for us, they say we have a very rare disease . if you would like to know how I have been coping with this for years leave an email address or if your on facebook leave that info and I would be glade to talk with you....until
    Anonymous 42789 Replies
    • December 7, 2010
    • 07:03 PM
    • 0
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  • Hi Jamila, my name is Kathy I have had this disease for 15yrs besides physical therapy to help strengthen the muscels, unfortunately there is nothing out there for us, they say we have a very rare disease . if you would like to know how I have been coping with this for years leave an email address or if your on facebook leave that info and I would be glade to talk with you....untilHi Kathy, my name is Debra, I am like you Ive had this disease for over 15 years. I take baclofen, it works a little bit, but not much. It's hard to cope with it. I don't know if you go through this, but some people stare at me. I wish they would find a cure for this?
    Anonymous 42789 Replies Flag this Response
  • Since a poster asked about a cure for this, I wanted to mention that a Greek patient was apparently cured by 8 months of treatments with Vidaza (Azacytidine). Please consider this as a possible therapy / cure for your symptoms.
    AlvinBishop 36 Replies Flag this Response
  • Kathy / Debra / Jamila,Soon (November 21, 2012), the FDA will be approving Tofacitinib, a JAK inhibitor, for arthritis, psoriasis, colitis, etc. The hidden surprise in Tofacitinib is that it is active against HTLV. Please ask your doctors about trying this drug, it should do wonders for your symptoms.Best wishes.
    AlvinBishop 36 Replies
    • September 5, 2012
    • 09:03 PM
    • 0
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  • Xeljanz (tofacitinib) has been approved on November 7th, 2012 - the hidden surprise is that it is effective against two disorders caused by HTLV: HAM and ATL. Since there are WAY more HTLV sufferers than arthritis sufferers, this drug will sell well because HTLV sufferers have no treatment for their suffering thus far.
    AlvinBishop 36 Replies
    • November 8, 2012
    • 06:33 PM
    • 0
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