How are you doing? Looks like I’m following a similar route as you. Deemed a responder, re-randomized. Crossing my fingers I’m getting the real drug (just started yesterday so too early to have a guess).
Scope at about 6 and a half weeks in found that my deep ulcers had cleared up. Still a total mess down there but they are saying they see a lot of signs of healing.
Down to about 4 BMs a day. I’d be content to stay at that rate. I still have blood here and there. And the quality of my stool varies quite a bit. I am being looser with my diet though and that seems to correlate wth some of my rougher bathroom trips. But even the bad trips seem a lot better then before the trial.
Hoping for more improvement. But if I had to stay where I’m at I’d take it. Very livable. That’s nice to say. And... hopefully I’m not on placebo. They can bump me to an open label study where I get real drug if I start to go downhill after something like 4 weeks. So I’ll be on the drug one way or another eventually.
Hope you are doing well.
Good to hear from you and glad to hear that you are doing well.
Well a fair bit has happened since last time. After I got re-randomised, my symptoms started to slowly worsen. After around a week or so, the number of BMs went up and I was having to run into shops to use the toilet when I was out and about
which wasnt the case before.
Also, the (mild) side effects that I was getting before stopped. (Strange dreams). Then the abdominal pains came back, etc. So, I was sure I was moved onto placebo. So, after 6 weeks I was moved onto the
open label. You need to have 2 "unscheduled loss of response" appointments 2 weeks apart to be eligible for
I have been on
open label 15mg for 10 days now, and things are improving again. Some days I only have 2 BMs with no blood, which is amazing. Though today i had 4. So, its up and down but its definately improving. Also the strange dreams came back! Have you experienced any side effects?
It is deeply disappointing that my healing was interrupted with the placebo and I moved backwards just when I was doing so well. But, that cant be helped. I hope you manage to avoid placebo.
There are 3 of us on
open label at my hospital now. Also, I think your steroid taper is a bit too fast, I could never come down that fast. But, then I have been on steroids for most of the past 18 years and now my adrenals are shot. I would drop by 1mg a month after 10mg and then at 5mg I switch to hydrocortisone which has much shorter half life than pred and makes taper easier. Its what worked for me last time.
Best wishes, keep us posted on your progress.