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Alopecia + Xeljanz

Discussion in 'Other Health News and Research' started by SDSue, Jun 21, 2014.

  1. SDSue

    SDSue Southeast

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    Maybe if we shave our heads we can be taken seriously and finally get some additional trials going. Who's with me?

    Side note: Google alopecia + psychogenic, and you'll see that alopecia is still considered a psych condition by the Overlords of Psychology. (Insert cursing here)
     
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  2. CaptainA

    CaptainA

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    So I know that this thread is super old but I wanted to mention that I'm currently being seen by one of the top ME/CFS doctors in the world and they mentioned using this drug.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    Was just curious, in what context is your ME/CFS doctor using this drug? Is it for something autoimmune similar to RTX or totally different?
     
  4. CaptainA

    CaptainA

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    I honestly have no idea. I can say that he is very focussed on CMV and the viral aspect of ME/CFS. At the end of our last appointment I just asked what the newest thing they are working on was he quietly mentioned this along with saying that they have big hopes for it. I'm seeing him in a couple of months and will be asking more info.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Interesting and thanks!
     
  6. CaptainA

    CaptainA

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    @Gingergrrl I've looked for the medication online to buy but haven't found it. It doesn't seem to have a ton of side effects so I was thinking about trying it myself. I might just wait until I hear back from the Dr./Prof. before I go it alone
     
    Little Bluestem likes this.
  7. Gingergrrl

    Gingergrrl Senior Member

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    I would wait to get more info (if it was me) so you'd know why they are looking at this med and if you are a good candidate for it. But I am more cautious until I am fairly certain the risk/benefit is worth it.
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    @CaptainA has your doctor mentioned anything else about Xeljanz?
     
  9. CaptainA

    CaptainA

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    So I was prescribed it but my insurance wouldn't approve it:( I still want to try it though...
     
  10. Jesse2233

    Jesse2233 Senior Member

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    Ugh how frustrating
     
  11. Learner1

    Learner1 Professional Patient

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    It may not be for everyone.

    Quote from: https://en.m.wikipedia.org/wiki/Tofacitinib

     
  12. CaptainA

    CaptainA

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    Yea, Its nasty stuff. I was a little apprehensive trying it but if it worked.....I would probably keep using it.
     
  13. Learner1

    Learner1 Professional Patient

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    Having journeyed through stage 3 cancer and learning a lot along the way, I learned the best way to treat cancer is not to get it in the first place... my dad died of non-Hodgkins lymphoma and my mom is dying from untreatable chronic lymphocytic leukemia.

    One must weigh all the pros and cons of any intervention and individualized treatment, to be sure.

    Best wishes...
     

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