August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

autoimmune/anakinra

Discussion in 'General Treatment' started by rebar, Oct 11, 2012.

  1. rebar

    rebar

    Messages:
    99
    Likes:
    108
    I may have a chance to try Anakinra, an IL-1 antagonist, a drug used for RA and a few other autoimmune disorders. I believe the drug has recently been used by Dr. Klimas and last week it was mentioned in the treatment discussion at the recent CFSAC meeting. Any thoughts, and or experience with it? Thanks in advance, this is an essential site, and although this is my first post I have avidly read and kept up with this community.
     
    *GG* likes this.
  2. Nielk

    Nielk

    Messages:
    6,469
    Likes:
    9,109
    Hi rebar,

    I have no answer for you regarding Anakinra but, I just wanted to welcome you to the forum.
     
  3. *GG*

    *GG* Senior Member

    Messages:
    5,389
    Likes:
    2,866
    Concord, NH
    I am not familiar with this drug either, but wanted to mention anohter Immune Modulating drug that is perhaps less harsh? LDN (low dose Naltrexone). Vitamin D is also an immune modulator. How are your levels? Don't believe the mainstream numbers, even if they say you are fine, it's an inexpensive supplement. Check out Dr. Mecolas website for the values you should aim for.

    GG

    PS Welcome to the forum, like the name, pour some concrete before?
     
  4. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    3,743
    Likes:
    7,315
    South Australia
    I don't know anyone who has taken it.

    It is an experimental drug for people with ME or CFS and so you need to be mindful of side effects.

    But there is only one way we will find out whether it helps patients: if patients like yourself actually try it.

    If you do try it, keep us updated. :)
     
  5. Anne

    Anne Senior Member

    Messages:
    222
    Likes:
    441
    @rebar : Did you try Anakinra? If so, how did it go?
     
  6. rebar

    rebar

    Messages:
    99
    Likes:
    108
    Anne, never did.
     

See more popular forum discussions.

Share This Page