My 1st Abatacept treatment

Hi all

I had my first infusions yesterday as part of the Abatacept trial (im in the UK).

Its taken 6 months (!) to get onto the trial due to various problems at the research centre.

The infusions took around 90 mins in total, and obviously I have no idea if I got the real thing or the placebo.

Havent really noticed too much change today.  Except, I am more tired than usual and my back hurts and so does my throat.  Really hope this works.  My next infusion is in 2 weeks time. I believe I am the only UC patient on the trial at my hospital.  A few CD patients are due to enter in a few weeks I am told.

It took me back to to my remicade infusion days.  I just hope this is more successful than they were!

 

Hey KSU, keep us updated as to how you are doing -- I'm very interested as my doc keeps wanting me to try this. I'm on Remi now and doing well so far...but as you can testify; you just never know! Good luck with the treatments and thanks for the info.

KSU - Hope it works for you. I've been on the Abatacept trial now for nearly 10 months - 4 months placebo controlled and 6 months on the open label.

All I can say is be patient. Abatacept doesn't seem to work as quickly as remicade.

Keep us posted

Hi Severin and Paul - Its interesting to hear your stories on Abatacept.

I see you both went to the open label part of the study quite quickly.  Did you have to go through another scope to get there?  I think the stage 2 of the trial is more tricky - as you have a 50% chance of placebo compared to stage 1 which is only 30%.

Also - did your counts detoriate?  On remicade, my WBC dropped so low, they kept me in hospital until it improved.  I asked the trial Dr about this, and he said if that happened on the trial I would be taken off!

Well, this is my 2nd day after the infusion. Its very early days  but I do feel a little better. Normally, I cant turn sides while sleeping without running to the bathroom but now I can. And my morning BM today was formed and no blood.

But, like you say, my symptoms also differ greatly from day to day. So, I will see how I am for the next few days before I know for sure.  My back still hurts - it began hurting right after the infusion, and hasn't stopped since.

HI Paul

If your score went from 9 to 10, then you must have had placebo?  Now, you have had an open label infusion, did you notice any difference afterwards compared to the earlier infusions?

My score is 10, so I think if I got  a 7 in my next scope, I would go into the maintenance. 

I hope the open label med starts working for you.  Today is much worse than yesterday and I had to wake up real early to go to the bathroom :-(  So, I dont think it is working for me yet. 

I am just so impatient.

 

KSU, just because my symptoms didn’t improve and actually got slightly worse doesn’t mean I was necessarily on the placebo. I just don’t know for sure. My study coordinator has been involved with IBD studies for many years and she says she has seen patients who swear they were on the real medication but turned out to be on the placebo and vise versa. Remember that this is a study to determine how effective Abatacept is. No treatment works for everyone. I have tried many treatments that didn’t work for me but have worked well for many on this forum.

I had my 3rd open label infusion February 5th and up until then I had no improvement in symptoms. For the last 2 weeks things may be getting better but it is difficult to tell, especially when my symptoms are up and down all the time. I have never felt anything unusual from any of the infusions, not even from the open label. I have absolutely no side effects. Just give the treatment time. I was told that it generally takes 3 to 4 infusions before it starts to work if at all.

make sure you ask because homeopathic/naturopathic remedies are still meds and can have some ill effects when mixed with other meds.

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