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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

    Hi Keebler, “we” have monthly appointments now. Then they will check the whole hubby in detail. ….
    Hiya Claire. I hope you feel better today. :unsure: How where the holidays?
    All the best, Frieda (with some days off now, yeah) :bounce:
     
  2. x_claire_x

    x_claire_x Moderator

    Hi Frieda..holidays seem a long time ago now, but they were fab and I was pretty well throughout which was such a bonus.

    Just thought I would report in my last set of bloods which I finally got at the end of last week:

    CK 361 (yay lowest yet..only X3 normal rather than 15X !!!) ALT 23 and AST 30 (not too bad given the wine tasting holiday...;0)

    Had an MRI about 10 days ago as I do get a few nasty migrainey type headaches.....only have to have the check because I am on the trial....now its like Frieda's husband...monthly blood tests to see what happens with the infusion withdrawn...deep joy ....be back later...
     
  3. Frieda

    Frieda Registered

    That sounds good, Claire!!!
    xxx Frieda xxx
     
  4. x_claire_x

    x_claire_x Moderator

    Quick catch up...had my July 17th visit to hospital for 18 vials of fasting bloods drawn and ECG, weight, checks etc etc..but obviously not on infusions now :0(((

    My results showed (not surprisingly ) my CKs are starting to rise as are my liver values. My neutrophils have dropped to 1.8 so had a call back to hospital the following week and they had risen to 3.3.
    Had CT of Lungs (second in three months) to try and ascertain if the trial could be worsening my pulmonary fibrosis.....Consultant thinks it has all stayed the same on listening to lungs but still waiting the actual results of CT...and feeling very radioactive !!!

    Feeling pretty exhausted again now...and a little more sore but my fingers etc haven't turned into great big sausages yet, so not too bad..the fatigue is the worst at the moment.
    Next appointment on 14th August next week.....it will be interesting to see what is going on with my CK and Liver then.
     
  5. Frieda

    Frieda Registered

    Hi Claire,
    How are you? Do you have any news after your appointment yesterday?

    Hubbys next "date" will be in September.
    Frieda
     
  6. x_claire_x

    x_claire_x Moderator

    Hi Frieda..only that my CT lungs have shown no progression of fibrosis...but still there, same as April Scan. MRI brain was ok....ECG ok
    I feel pretty tired and more achey/burney muscles and a lot of acid reflux which I have told them.

    I await blood test results and results of breathing tests..had the lot yesterday!! How did your hubby get on?
    my next date is September too....xxx
     
  7. Frieda

    Frieda Registered

    Hi Claire,
    Hubby is fine, no changes, although he reduced (!) his steroids (puh).
    I guess, you had the real drug …

    Happy weekend xxx
    Frieda
     
  8. x_claire_x

    x_claire_x Moderator

    Hi Frieda.. I certainly feel that I did have the real drug as I have been feeling far more human with it...it will be interesting to find out for both your hubby and me xxxx

    Have a restful weekend Frieda
     
  9. Frieda

    Frieda Registered

    Next meeting with the doc on Tuesday. I am curious to see what happened ...
    Take care, Frieda
     
  10. x_claire_x

    x_claire_x Moderator

    Hi Frieda.... my last set of bloods show CK still climbing, Liver levels still climbing......which is still very indicative of having had the real infusion... my next appointment is next Wednesday so your hubby beat me to it next week !!

    Let us know how it goes...lots of hugs to you both.............Claire
     
  11. Frieda

    Frieda Registered

    Hiya Claire,
    The same procedure as every year ... No changes, no news. Only this one: Hubby shall not reduce the meds (prednisolone) again. I hope you will have good news next week.
    And by the way, I wonder when they will inform us about the results of the study then … I am not born to wait and wait and wait ... :nail:
    Xxx Frieda
     
  12. x_claire_x

    x_claire_x Moderator

    That is fair enough, I think it is a good time to be impatient !! ;0)
     
  13. Frieda

    Frieda Registered

    Hi Claire,
    How do you do? Your meeting was today, wasn't it?
    Many hughs.
    Frieda
     
  14. SueC

    SueC Staying Simple

    Hi Frieda & Claire,

    I just have a question on Sifalimumab trials.
    I read in some posts that the trials had been paused for a while.
    I wanna know whether they're now continued and ongoing.

    I read in this page that they're ongoing, but I just wanted to know from here because it feels more reliable.
    https://www.clinicaltrialsregister.eu/ctr-search/trial/2010-024069-30/HU

    Luv,
    Sue :)
     
  15. x_claire_x

    x_claire_x Moderator

    Hiya.....the trial is still ongoing but the last participants are still finishing. They are not recruiting as the last lot were last Autumn... my infusions have stopped as have Frieda's husbands but we still have to 'do' 6 months of various tests and loads of bloods post infusions..so we officially finish in December.

    The published results should be June 2014.....and I am very hopeful for this drug, though they are trialling a similar one alongside so the winner will be the one they take to market.

    My last bloods showed a continuing increase with CK and Liver Enzymes which I expected as sure I am on the real thing.... I feel surprisingly ok though and my swollen fingers have not returned too seriously......I hope I do ok through the Winter..........now we have to wait and it seems interminably long :0((

    Thanks for your interest Sue
     
  16. SueC

    SueC Staying Simple

    Hi Claire,

    Thanks! I hope the trial will turn out a success, for either one of the drugs.
    We need it to be a success. :p

    take care & best of luck!
    Su :)
     
  17. Frieda

    Frieda Registered

    Hi Sue,
    Next ****** meeting will be in the next week, and the last one is in December - as Claire said.
    We hope they will inform us about th "content" of the drink very soon ...
    All the best, Frieda
     
  18. x_claire_x

    x_claire_x Moderator

    Sue I should have said that my CK and Liver Enzymes have been climbing since the infusions were stopped....which is why I think I was on the real thing !! Sorry for any confusion.....Claire
     
  19. SueC

    SueC Staying Simple

    That's great Claire, to be on the real thing. I am so very hopeful that it works on everyone the way it does on you, and not give individually unique levels of effectiveness, which could actually make it harder for the docs to keep a standard of dosage, because they'll have to adjust a dosage for everyone then. :)
     
  20. SueC

    SueC Staying Simple

    Awesome. Suddenly December seems like a long time from now. :p I can't wait to know the results you guys get & read the papers when the trials finish.
    International trials will be more complicated & longer I guess, as well as the after-trial monitoring/studies.
    To be honest, I kind think I was born too early.. Shoulda been born after the trials are done with success.. hehe. =P

    Best of luck!

    luv,
    Sue
     

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