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Sifalimumab Drug Trial

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

  1. x_claire_x

    x_claire_x Moderator

    Hi everybody...just to let you know my blood results were....CK 554 ALT 25 AST 39 so all still going down; just be good to get my CK into normal range (80-110).

    However my lungs are crackling apparently and my breathing test was not very good this time,but I had had rib pain so who knows?? Anyway got to go have an Echo (heart) scan, a CT of my lungs and a retest of breathing if the NHS will let me! So I am a bit annoyed and concerned as any probs could affect the trial and generally I feel a lot brighter..grrr.

    Next infusion due end of April but my Rheumy wants all those tests done before then...so I am keeping everything crossed as usual...:sigh:
     
  2. dmarie

    dmarie Registered

    Hi Claire,

    I hope all goes well and that you can get these tests done as soon as possible.
    Take care. :tinker:

    dmarie
     
  3. x_claire_x

    x_claire_x Moderator

    Thank you dmarie xx appreciated
     
  4. keebler

    keebler Moderator

    Sending you strengthening hugs :hug: to get threw all those tests by the end of April, Claire.:grouphug2:
     
  5. Frieda

    Frieda Registered

    Hi everybody,
    Just to let you know. The next infusion went fine. We all believe that the best and lovely hubby of the world is on placebo or a very low dose. It seems that he may continue with the (real?) med after June.
    Take care, Frieda

    @Claire: :kiss:
     
  6. keebler

    keebler Moderator

    Hi Frieda,
    Glad the infusion went fine. That sounds great that he gets to continue with the med after June.
    Take care,
    Lyn
     
  7. x_claire_x

    x_claire_x Moderator

    HI everyone... I had a very up and down week prior to infusion as it was questioned if the trial drug would exacerbate my pulmonary fibrosis...I had some prior to commencement but they hadn't done breathing tests..which were down from 2 and half years ago....but I was pretty ill pre trial with a lot of weight loss etc so not sure if my breathing would have already been at low ebb had they taken them then... I think it probably would have.
    Theres a study that shows the trial drug makes lung probs worse and another study that shows it helps them..EEK
    Anyway cardiac scan was ok...lungs ? slightly worse ..had to see a Respiratory Specialist before allowed to have infusion so saw him privately (mega expensive!!).
    Finally got infusion and hope ok to continue the trial. It has knocked me a bit though...its hard to be taking part in something that is making you feel so much better with the knowledge that you could be damaging your lungs further (?)..after all we only have one set of those :0(
    My bloods showed ALT 22 AST 35..so both down again..but CK popped up to 594....GRR

    Ah well...suppose I shall continue to plod on.
     
  8. cally

    cally Registered

    Claire that must be worrying and frustrating for you. I'm thinking about you x
     
  9. debatat

    debatat Moderator

    :hug: Claire, thinking of you, it must be worrying.
     
  10. Jessica1

    Jessica1 Moderator

    Claire - big hugs your way. Keep plodding on, we're all with you and thinking of you :hug:
     
  11. keebler

    keebler Moderator

    Sending :hug: your way Claire.
     
  12. x_claire_x

    x_claire_x Moderator

    Thankyou guys as always for your lovely support xxx
     
  13. Frieda

    Frieda Registered

  14. x_claire_x

    x_claire_x Moderator

    Thank you Frieda for the link..an interesting article from the first phase study of this drug. It didn't seem to specify a problem with fibrosis which is comforting.

    I still managed to dance at my nephews wedding and sing at the same time....without gasping!! Mind you been recovering ever since!!!! On to the next dose I suppose in a couple of weeks xx
     
  15. Frieda

    Frieda Registered

    Hi everybody,
    Just to let you know. The next infusion went fine (as always). No news or changes in the blood.
    All the best and take care,
    Frieda
     
  16. x_claire_x

    x_claire_x Moderator

    Hello everybody....my infusion last week went fine too...bloods are better again CK down to 423 ALT 20 and AST 25.

    Feeling very nervous about coming to the end..next month last one and then watch and wait for 6 mths to see what happens (oh Lordy!!). Results get published June 2014 and if it goes ahead there will be a phase 3 study worldwide. Of the current recruits nobody has dropped out of the trial so that seems to show not too many adverse side effects.

    I am due a brain MRI as having quite a few headaches.......and CT scan of lungs to ensure fibrosis not worsened a few months after last infusion.
    I am worried about a rebound effect and would have to go on a high dose of prednisolone if that were to happen...today I have woken with a swollen jaw so I know it hasn't dampened down my Lupus totally and I think it will kick back in as soon as this trial drug (which I am sure I am on) is withdrawn...:0( struggling with knowing that.

    We will just have to wait and see.......Claire
     
  17. keebler

    keebler Moderator

    :grouphug2: Claire
     
  18. Frieda

    Frieda Registered

    Hi everybody,
    My hubby now had his last infusion. It went fine. However, there are no changes with bloods. Now they continue with different meetings where they only check the development. In case of bad changes new meds/ a new study have to be discussed. Up to now we do not know whether a placebo or the real drug is in action.
    All the best to you….
    Frieda
     
  19. keebler

    keebler Moderator

    Thank you for letting us know Frieda.
    Sounds like it is a waiting game now? How often will you go to appointments?
    Best wishes to you and your husband.
    Lyn
     
  20. x_claire_x

    x_claire_x Moderator

    Hiya Frieda..I too had my last infusion yesterday.... pretty sore at the moment as overdone it again..will report bloods next week. Now I have to go back just for bloods for 6 mths whilst they watch me suffer!!!! Mind you it seems they are heading the Interferon A treatment way generally so hope it has helped push on progress in Lupus treatment.
     

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