Posted 3/20/2008 8:34 AM (GMT -6)
I had my 3rd infusion on Tuesday, and, touch wood, I think it is working. My average number of BMs is down from 7 a day to around 3. And no blood. It is amazing.
Even Remicade never did this for me. I still can't believe it. I have been sick for soooo long. I just hope it lasts...
The infusion itself was a disaster for the 2nd time in a row. I wish they would train NHS nurses how to operate an infusion pump, it would save me having to wait for 2 hours while they messed around with it, only to break it, lol. Took several attempts to get the IV needle in which REALLY hurt.
Its strange, after my 1st infusion I got BAD neck pains. After my 2nd I was fine (which led me to think I must have placebo). And now the pain is back. Weird.
I hate having to take a stool sample for every infusion, but its a small price to pay if it means I will get into remission for the first time in 5 years.
Finally, my thoughts on the Abatacept trial itself. I think it is flawed. You are not allowed to take ANY rectal meds, whatsoever (I think due to the fact they use flex sig to assess your response) - for the whole 2 year trial. That is just plain silly. To get onto this trial, you must have refractory UC that has not responded adequately to all conventional meds. So, you would be a "difficult" to treat patient. It is common knowledge rectal meds are a must in such patients. So, to ban enemas/supps will inevitably mean many patients on the trial will not respond properly, who otherwise might have done - and thus impacting the likelihood of Abatacept getting a licence.
Just my view on things.
I will report back after Infusion 4. Take care
Abatacept Trial since Feb 2008 (Induction Period)
Back on Pred - 5mg - Steroid Dependent :-(
Predfoam Enema - Had to stop as not allowed during trial
EPA Fish Oils, Various Homeopathic meds
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks (Stopped working)
Aloe Vera Lily of the Desert Juice Gave me the worst D !
Primadophilus Reuteri Probiotic
Post Edited (KSU) : 3/20/2008 10:37:55 AM (GMT-6)