I was diagnosed with UC 2 years ago. I had gotten sick and was given antibiotics and then started having stomach problems. After a colonoscopy, they said it was ulcerative colitis. I went on Lialida and Prednisone and soon was back to normal. Then this march I switch jobs (stressful) and started a flare. I ran out of Lialda before the new insurance picked up. Been in a flare since. We also moved and the doc here did a colonoscopy and prescribed Remicade and Balsalazide.
Question:
I am seeing little help from the remicade (go for my 4th dose today). Have others stopped the remicade and how did that go?
I think my next step is to find a different doc.
I was diagnosed with UC 2 years ago. I had gotten sick and was given antiboitics and then started having stomach problems.
Hi, I had the induction program of remicade (3 doses at weeks 0, 2 and 6) and then discontinued it. I was on high doses of prednisone at the time of the first dose and was weaning off it over those 6 weeks. I had my third dose in June this year. I successfully weaned off the pred over that time and was largely symptom free for 3 months.
I also started the SCD at the same time, but probably not as carefully as I should have because the symptoms were so well dealt with by the drugs.
It all fell apart a couple of weeks ago, not in a big way, but some symptoms every day.
I don’t want to talk to my Dr about it yet, because he’s pretty big on ‘just try this other drug’ and dismisses any food connection. (which probably means I should be looking for a new Dr too). So my plan is to restart the SCD (I started the intro diet 3 days ago – looking forward to adding yoghurt to breakfast tomorrow) and talk to my Dr in a few weeks if I’m not feeling much better, and sooner if I keep getting worse.
Not really sure what I’m trying to say about stopping the remicade – it seemed to work for me though, so quite a different situation to you. I’ve had a bunch of things that didn’t seem to do much – mesalimine enaemas which I was put on when first diagnosed, which did nothing except give me even worse cramps whcih I stopped after a few weeks, mesalimine granules which did nothing but I’m still on the max dose, Azathioprine which didn’t have long enough to work (before I went back on massive doses of pred) which I’m also still on. My Dr didn’t want to change the meds the last time I spoke to him because everything was holding together for the first time on months, but all going well with SCD, I’ll talk to him about reducing doses later this year.
I can’t see any reason to be on drugs if they aren’t doing anything. Annd my understanding is the remicade is meant to work pretty fast – the nurses where I was getting it said people often see improvements from a single does.
All the best
Dont stop the treatment if you can. I know when I started it got better after 6th treatment. And actually I have been on it since last nov and I have really felt “normal” (and I use that word lightly) since June. So If you are finding some relief stick it out a little bit longer and see. I know its expensive and hard on the system but if it works…to me anything is worth it! Good luck!