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SLE drug trial - LY2127399

Discussion in 'Lupus News, Awareness and Research' started by Holley, Mar 4, 2013.

  1. keebler

    keebler Moderator

    Glad it is going smoothly for you. :)
     
  2. lazylegs

    lazylegs Moderator

    :fingers: you got the real thing and you remain side effect free.

    Take care,
    Lazylegs
     
  3. Frieda

    Frieda Registered

    Hi Holley,
    my hubby is in the drug trial for Sifalimumab, a double blind study too. You are in the Tabalumab then? We wish you all the best !!!!
    Best regards, Frieda
     
  4. Holley

    Holley Registered

    Hi everyone,

    Sorry it has been so long!

    I am now on a full dose fully funded by the New Zealand Government and according to my bloods I am functioning as a "normal" person!!!

    As we lupies know, you still have "those days" but from when I was first diagnosed until knopw - apart from my skin you wouldnt even know anything was wrong.

    My hair has now fully grown back too!

    (I am still taking Plaq x 2 200mg, Methotrexate on Monday 20mg, Folic Acid Friday 5mg)

    I hope everyone is doing ok xxxxx
     
  5. x_claire_x

    x_claire_x Moderator

    So glad you are feeling more human Holley...... we are still waiting for the news on the Sifalimumab trial...due to be published anytime now.... I feel better than I have for years and am sure I was on the real thing.....hope to find out more soon too....the more choices we have..the better :0)))
     
  6. lazylegs

    lazylegs Moderator

    Congratulations Holley.
     
  7. keebler

    keebler Moderator

    Yay Holley!
    Good luck next Wednesday!
     
  8. Holley

    Holley Registered

    Hi guys,

    Again my apologies for the late update.

    Turns out the drug was Benlysta, they have cancelled the trial due to the results not be good or bad.......

    2 weeks since I had my last dose and after feeling normal for almost 2 years Lupus symptoms are on their way back :(

    Hopefully things dont go all the way backwards :S

    Much love

    Holley xx
     
  9. x_claire_x

    x_claire_x Moderator

    Seems strange to be trialling a drug that is already in use? Hope they don't all come back.....Claire
     
  10. lazylegs

    lazylegs Moderator

    Claire my mother-in-law was in a trial until recently for a well known bone density medication. They were studying the long term effects. She was in it for at least 20 years.
     
  11. Holley

    Holley Registered

    I believe they were trying to make it available in New Zealand (there are no current treatments for Lupus itself in NZ), so not sure what they will do from there.
     
  12. x_claire_x

    x_claire_x Moderator

    Ah, they probably have to run their own trials for safety/effectiveness purposes. I know they can trial existing drugs for a longer time or for a different illnesses; was just wondering if they are weighing up cost effectiveness as well ?
     
  13. lazylegs

    lazylegs Moderator

    They may be Claire. In MIL's case though she stayed in the trial to see what the long term effects would be.
     

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