Hi all, just stumbled across this forum so i'd thought i'd join up - I was actually diagnosed with Crohn's Colitis just over 5 years ago so god knows how i've not come across you lot earlier!
I'll keep it brief but this is my story so far...
Like I say I was diagnosed just over 5 years ago at the age of 26. I became quite ill initially and was hospitalised and treated with IV Steroids - later changed to Prednisolone as well as Aasacol and Azathioprine (think those of you in the US know it as Imuran?).
This little cocktail of drugs worked a treat - until I tried to stop Prednisolone. Sounds familiar to a lot of you I bet! Anyway the next few years were spent experimenting with varying doses of Azathioprine but symptoms always came back when I got down to 15mg/10mg of prednisolone.
Next came Infliximab, again worked a treat but same old story with Pred, although I did manage to get down to 5mg!
Then there was Adalimumab (Humira), and i did manage to quit Pred - and although my symptoms weren't too bad I wasn't what i'd call in remission, even when I was upped to the double dose!
Which brings me up to today. I stopped Humira a couple of months ago and back on Pred along with Mezavant and i should be starting the medical trial for Vedolizumab soon (just waiting for my hospital to get approval) and that sounds promising.
I've actually just been on another clinical trial for a drug made by Pfizer, no name yet but it's 'called' CP-690,550. It's supposed to work in a different way to Anti-TNF and it targets a different molecule, known as JAK3. Oh and it's tablets rather than infusion or injection. It's still in quite early stages, I think this trial might have been stage II and it only lasted 4 weeks - had my last dose today.
The good news is I think it works, noticed a slight improvement in the 3rd week and more so in the 4th (BMs down to 4 per day compared to 7/8 before the trial). Of course this could be down to the fact that i've been on 20mg of Pred as well as for about 6 weeks as I wasn't allowed to taper while on the trial. I'm to stay on 20mg for another 4 weeks as well and then go back for review so i guess it's these next few weeks when i'll find out if the improvement was down to the trial drug or not.
I don't know what dose i was on and I could have been on placebo but after 5 years of drugs not working i'm fairly pessimistic so i doubt i'd have seen improvement with placebo! It's encouraging to know there's a few new treatments in the pipeline and treatments that seem to be successful. Hopefully they'll keep me and some of you off the operating table!
Ooops, just realised I said i'd keep it brief!
Sorry and hello!
I'll keep it brief but this is my story so far...
Like I say I was diagnosed just over 5 years ago at the age of 26. I became quite ill initially and was hospitalised and treated with IV Steroids - later changed to Prednisolone as well as Aasacol and Azathioprine (think those of you in the US know it as Imuran?).
This little cocktail of drugs worked a treat - until I tried to stop Prednisolone. Sounds familiar to a lot of you I bet! Anyway the next few years were spent experimenting with varying doses of Azathioprine but symptoms always came back when I got down to 15mg/10mg of prednisolone.
Next came Infliximab, again worked a treat but same old story with Pred, although I did manage to get down to 5mg!
Then there was Adalimumab (Humira), and i did manage to quit Pred - and although my symptoms weren't too bad I wasn't what i'd call in remission, even when I was upped to the double dose!
Which brings me up to today. I stopped Humira a couple of months ago and back on Pred along with Mezavant and i should be starting the medical trial for Vedolizumab soon (just waiting for my hospital to get approval) and that sounds promising.
I've actually just been on another clinical trial for a drug made by Pfizer, no name yet but it's 'called' CP-690,550. It's supposed to work in a different way to Anti-TNF and it targets a different molecule, known as JAK3. Oh and it's tablets rather than infusion or injection. It's still in quite early stages, I think this trial might have been stage II and it only lasted 4 weeks - had my last dose today.
The good news is I think it works, noticed a slight improvement in the 3rd week and more so in the 4th (BMs down to 4 per day compared to 7/8 before the trial). Of course this could be down to the fact that i've been on 20mg of Pred as well as for about 6 weeks as I wasn't allowed to taper while on the trial. I'm to stay on 20mg for another 4 weeks as well and then go back for review so i guess it's these next few weeks when i'll find out if the improvement was down to the trial drug or not.
I don't know what dose i was on and I could have been on placebo but after 5 years of drugs not working i'm fairly pessimistic so i doubt i'd have seen improvement with placebo! It's encouraging to know there's a few new treatments in the pipeline and treatments that seem to be successful. Hopefully they'll keep me and some of you off the operating table!
Ooops, just realised I said i'd keep it brief!
Sorry and hello!
