Results 1 to 5 of 5

Thread: CNS lupus - med options?

  1. #1
    Join Date
    May 2010
    Posts
    27
    Thanks
    1
    Thanked 3 Times in 3 Posts

    Default CNS lupus - med options?

    Have had it for a little over 10 years now. Prednisone and Imuran won't touch it.

    Cytoxan did well for a while, but lost a lot of it's effectiveness. CellCept helped very well for a few years, until my ex-rheumy too me off of it and it hasn't worked as well since (and probably accumulated more permanent damage).

    New rheumy has tried Rituxan (got a decent response, but still struggled), IVIG also helped (still taking it, so don't know full affect).

    Besides plasmapharesis and experiment stuff, it there anything I'm leaving out that could be tried with reasonable expectations of it having a real effect?

    Thanks.
    --Dar
    Neuropsychiatric (aka CNS) Lupus

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    I've read that the drug Neurontin is prescribed for CNS problems from Lupus. I take it to control the pain from Trigeminal Neuralgia. It works well for me, and has eliminated much of my nerve related pain. I've read some reports from CNS Lupus patients, and many say that the drug really helps with their various CNS problems. Food for thought anyway.

    Rob

  3. #3
    Join Date
    May 2010
    Posts
    27
    Thanks
    1
    Thanked 3 Times in 3 Posts

    Default

    I am actually taking Neurontin to help with movement disorders and stuff, but I was hoping for other treatment options that would help with the disease itself, not just the symptoms. If you have any ideas along those lines, would love to hear them. I wonder if since I haven't had Cytoxan, it might be effective again (although my rheumy doesn't seem found of going there).

    Otherwise I'll have to treat with symptomatic meds like Neurontin, and I'm already on high doses of a few of those.

    Thanks for the reply.
    --Dar
    Neuropsychiatric (aka CNS) Lupus

  4. #4
    Join Date
    Mar 2009
    Location
    Lebanon, Pa.
    Posts
    802
    Blog Entries
    4
    Thanks
    26
    Thanked 82 Times in 57 Posts

    Default

    I do not know if there is any drug that takes this diease away but only helps to control the symptoms. Bonita

  5. #5
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Quote Originally Posted by Bonita View Post
    I do not know if there is any drug that takes this diease away but only helps to control the symptoms. Bonita
    If anything is ever discovered that takes this disease away, I'll buy a keg of the stuff and throw us all a party, on me!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •