Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Alopecia + Xeljanz

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

  1. SDSue

    SDSue Southeast

    Messages:
    1,066
    Likes:
    2,982
    Florida
    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)
     
    Jennifer J, Thinktank and Valentijn like this.
  2. CaptainA

    CaptainA

    Messages:
    61
    Likes:
    81
    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.
     
    SDSue likes this.
  3. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    6,492
    Likes:
    13,406
    USA
    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

    Messages:
    61
    Likes:
    81
    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.
     
    Gingergrrl likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    6,492
    Likes:
    13,406
    USA
    Interesting and thanks!
     
  6. CaptainA

    CaptainA

    Messages:
    61
    Likes:
    81
    @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
     
  7. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    6,492
    Likes:
    13,406
    USA
    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.
     

See more popular forum discussions.

Share This Page