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Sifalimumab Drug Trial

Discussion in 'Lupus News, Awareness and Research' started by x_claire_x, Mar 19, 2012.

  1. Frieda

    Frieda Registered

    prob. no news in december ...

    Hi Sue,
    I am afraid that we will not get any information in December. This is because the last trial members are not ready this year what could mean: next year/ summer. The good news for hubby and me: There are no bad developments in the bloods the after last test.
    Take care,
    Frieda
     
  2. Frieda

    Frieda Registered

    Hi everybody,
    Just to let you know. There are no news regarding Sifalimumab and „our” drug trial. But, my hubby has been invited to trial a new drug. Up to now, I do not know the name of the trial. More news we will get during the next weeks; then we will know whether “we” fit the criteria. I will keep you posted ... And - honestly speaking - I am a little bit nervous ....
    I wish you a merry merry Christmas.
    All the best, yours Frieda
     
  3. keebler

    keebler Moderator

    Thank you Frieda for keeping us updated.
    It sounds very interesting about a new drug trial.
    How is your husband doing?
    Merry Christmas to you and your husband.
    Lyn
     
  4. x_claire_x

    x_claire_x Moderator

    Hiya Everybody and Sue :0).... they have trialled three different doses plus the placebo so I would assume they will decide which dose has been the most effective with least side effects.
    All 11 in the UK completed the trial up to December when I asked and no deaths (which is comforting !).

    I still feel much better and indeed my December Ck levels had dropped a bit again, although they were done in the hospital lab rather than the research lab, so they can vary a little...but this had dropped enough to make me wonder....it has been mentioned that they are also hoping for a kind of 'resetting' of our genetic codes...which would be fab.
    My husband was saying the other night he can't believe how much more 'normal' I seem even off the infusion and although I obviously am still ill, I am much better within that compared to prior to the trial and we expected a swift decline after stopping the infusions in June...in fact I was dreading them...but so far it hasn't been too bad at all.

    The drug (antibodies), should it be given the go ahead, will not be available until end of 2014 at the earliest as they would start manufacture in June...assuming it doesn't have to go through a phase 3 trial...basically it all depends on the outcome of this trial and also of the other trial that was running alongside. I will be very happy if it comes to market as it really has made a difference. Will keep you informed of what I am told.....keep everything crossed Luppies............Claire
     
  5. Frieda

    Frieda Registered

    ~~Hi everybody,
    We now know that „we“ do not fit the criteria of the study (has no name, only numbers) . The blood results were “perfect”, but the time frame between the last, the Sifalimumab study and the new one is to short. Honestly speaking, I feel much better with this. It seems to be very young study, with the necessity of a 24 hours check …
    All the best. Have a nice Weekend,
    Frieda
     
  6. Frieda

    Frieda Registered

    Dear all,
    there are no news regarding Sifalimumab. But next week "we" start with Benlysta. I hope this will work (soon). All experiences are very welcome ...
    Take care.
    Frieda
     
  7. Frieda

    Frieda Registered

  8. keebler

    keebler Moderator

    Thank you for the link Frieda. :)
    How is your husband doing?
     
  9. Frieda

    Frieda Registered

    Thank you Keebler.
    He seems to be on the up and up. Perhaps Benlysta is working? Would be so great. See you ...
     
  10. keebler

    keebler Moderator

    Great news Frieda! Glad he is on the up and up. Gives us all hope for feeling better.
    Thank you
     
  11. Frieda

    Frieda Registered

    In fact, we love Benlysta.
    The results (blood tests) are as they always are. However, my husband feels quite better after the 8th cup.
     
  12. keebler

    keebler Moderator

    Hi Frieda,
    That is great news! Glad your husband is responding to Benlysta.
    Thank you for letting us know. It gives us all hope that Benlysta is helping.
    Take care,
    Lyn
     
  13. x_claire_x

    x_claire_x Moderator

    Meanwhile we both await news of the trial..... I am sure I was on it as feel much improved; whereas Frieda's husband either was on placebo on a tiny dose maybe? Anyway a double blind study so we are still waiting news 18 months after stopping the trial..not exactly dynamic!!
     

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