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looking for long term remicade success stories.....

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Ulcerative Colitis
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Posted 4/26/2013 10:21 AM (GMT 0)
Been reading lots on from search here but a lot of posts are old.

WOndering who has had long term success with Remicade on here? how long have you been on and it working? I know it's a relatively new drug for UC.

Thanks.

getting 1st dose later this morning..... could use some encouraging stories of long term use...
Posted 4/26/2013 10:51 AM (GMT 0)
I had severe pancolitis and was very close to having surgery when I started Remicade over 2 years ago. It took around 2 months until Remicade put me fully into remission and I have been fine ever since.

The only issue I have is that I'm fatigued for up to a week after each infusion.
Posted 4/26/2013 11:47 AM (GMT 0)
You know I'm an advocate for remicade.

I've been in remission on it for 2 years. I had to stop when I moved to the US.

The only real bad side effect I had was shingles. I got it under control within a week and the right medication though.

All the best

Post Edited (Andrina) : 4/26/2013 2:14:53 PM (GMT-6)

Posted 4/26/2013 1:52 PM (GMT 0)
I've been on it since October '11 and it has put me in remission. The only issue I had with it in the beginning is that my GI didn't have me do a pre-med which resulted in my hands swelling after my 3rd infusion. I now get Benedryl and Solmderol before each infusion and I haven't had an issue since.

However I'm getting my blood tested on May 6th to check my levels because its been wearing off at the 6 week mark instead of 8.
Posted 4/26/2013 2:00 PM (GMT 0)
thanks Red, i'm on steroids so that will help ... and in hospital so well monitored at least for this first dose...
Posted 4/26/2013 5:08 PM (GMT 0)
Most people that have had long term success with Remicade are probably not posting on this board IMO.
Posted 4/26/2013 5:37 PM (GMT 0)
true^ no body comes here and says 'hey look at me I've been on remicade for x amount of years!' they're out doing things !
Posted 8/20/2013 12:13 PM (GMT 0)
Canadagal, how about an update? How's remicade working? I start it on Thursday and I'm extremely anxious and hopeful.
Posted 8/20/2013 12:26 PM (GMT 0)
March 2006. At that point I had been flaring seriously since the summer of 2001.
Posted 8/23/2013 11:33 AM (GMT 0)
Hi everyone,

Happy to say I'm doing very well on Remicade. Life is back to normal. I've spent the summer on the east coast visiting family, eating way too much fried foods and enjoying the freedom of once a day formed BM's. I keep looking back in disbelieve that only 3-4 months ago I was in such bad shape. I also realize now how unwell I felt all of last year. Looking forward to new adventures this year, now that I have energy again and can leave the house with no worries.

Remicade definitely worked for me, still worried a bit about the 'for how long... " but trying not to let that stress me too much and just enjoy this health. Wish this worked for everyone. Hoping it will work for me until they find the darn cure for this horrible condition.
Posted 8/23/2013 1:28 PM (GMT 0)
That's awesome to hear! I had my first infusion and so far haven't noticed any difference but I'm very hopeful. Thanks for the update
Posted 8/23/2013 1:47 PM (GMT 0)
That's great to hear you're doing good :) I'm the same way though, can't help but wonder how long this will work for me too.
Posted 8/23/2013 1:53 PM (GMT 0)
Just read study that found higher BMI is associated with come biologics working for less time
Posted 8/23/2013 2:19 PM (GMT 0)
Had 4 great colitis years on Remicade. Infections were the only serious side effect. Hope it works for you long term too!
Posted 8/23/2013 2:56 PM (GMT 0)
Rabbit, hang in there. 1st dose is not always enough.. I guess some people it changes in 24 hrs.. for me it did not. Did notice improvement but not total symptom free after 2nd dose (early rescue double dose) blood did stop after a few days at that point though, frequency started going down too. Only after 3rd dose did stool return to normal.

Kat, So far so good, not even a sniffle... but school year is about to start so i'll see how I hold up to all those preschool germs... lol
Posted 8/23/2013 5:20 PM (GMT 0)
Thanks canadagal. I'm trying to hang in there and be patient. I'm also doing a 40mg pred taper (started 30mg today) and just trying to pray for some sort of relief. The cramping is absolutely debilitating. Hopefully it starts to kick in soon or next infusion.

Ill crap 15 times a day as long as it doesn't feel like the D is ripping my insides out along with it.

Fingers crossed!
Posted 9/4/2013 5:53 AM (GMT 0)
Had my second infusion today. All went well as far as the procedure is concerned. I have yet to feel any relief from the remicade (just tons of fatigue). My prednisone taper is down to 15mg. Currently no blood but still having really watery bowel movements, cramping (not nearly as bad as before) and gas/urgency at night. Also, I've been taking small doses of imodium at night to try and alleviate some of the urgency and get some sleep, it does seem to work a bit. Hopefully this stuff starts working soon. Fingers crossed.
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