What should I do?
humira - 0.0% - 0 votes
remicade - 100.0% - 3 votes
surgery - 0.0% - 0 votes
other? - 0.0% - 0 votes
timras14
New Member
Joined : Oct 2014
Posts : 4
Posted 10/17/2014 4:30 AM (GMT -5)
Hi, I am new to the forum. I am a 28 year old male. I was diagnosed with UC a little over 8 years ago. I have tried a lot of different medications. I am currently on the max dosage of lialda, also 40 mg prednisone a day, and 40 mg injection of humira once a week.
I have been on prednisone for about 2 years straight, i can not get off of it! I have tried tapering down to 20mg and my symptoms got dramatically worse.
I have been on humira for about a year now. I didnt see much of an impact for about the first 6 months, then it seemed like i was doing better once i switched to once a week compared to once every 2 weeks. I then tried to drop from 40mg prednisone to 30mg prednisone. The symptoms arent super bad, but they are much worse than when i was on 40, so i went back to 40mg.
The symptoms are blood/mucus, which i can handle. But the main thing is urgency. It is ruining my life, I must eat 8 hours before work; I can not eat anything without having to use the restroom about 5-10 times within the next hour.
I have tried so many different diets, nothing seems to work. I was thinking of getting the surgery, but my doctors talked me out of it. I am just completely sick of this disease ruining my life, something needs done.
Should I try remicade? I really want to get off of the prednisone, and it doesnt look like its gonna happen with humira.
Sorry for the long post, any questions or comments would be greatly appreciated, Thanks!
Jay79
Regular Member
Joined : Jun 2011
Posts : 183
Posted 10/17/2014 6:20 AM (GMT -5)
Prednisone for 2 years yikes. I was on it for 18 months and that was horrible.
Your situation sounds very much like my experience, max dose of Liald and then Humira which didn't seem to help. Dr. put me on Remicade which has worked very well for me. Was able to taper off Prednisone and the flare and urgency came under control.
Remicade may take 3-4 infusions before it starts working, so taper the Prednisone slowly especially since you've been on it so long.
Posted 10/17/2014 7:59 AM (GMT -5)
You should have never been on prednisone that long. It will destroy your body so much that even if you were in complete UC remission you will be far worse off. The longer you are on it the worse it will destroy your body. If I understand your post correctly, it doesn't even sound like you were close to remission, even on the higher doses. Please check the resources thread at the top of the page for ideas. There are many. Personally, I think your doctors have been idiots for not coming up with plan B a long time ago. Prednisone should never be prescribed for that long, particularly at the doses you talk about and the Humira obviously isn't working anywhere near well enough and never will. I didn't vote because it looks like you still have many more choices than in your poll. Have you ever tried mega dose probiotics such as VSL#3?
Posted 10/17/2014 9:51 AM (GMT -5)
I'm a huge fan of remicade. My doc explained to me that patients that respond well to steroids tend to do well with remicade. I went on it when steroids were taking longer to break my flares and I saw immediate results, first eliminating the painful cramps and then minimizing the urgency/frequency.
dmacell
Veteran Member
Joined : Nov 2005
Posts : 1003
Posted 10/17/2014 1:46 PM (GMT -5)
I went from 6 years on remi to humira 1 month...to cimzia 2 years which put me in remission for a year and a half. If this new flare continues simponi is next but things seem to be calming down.
Contentprof
Regular Member
Joined : May 2014
Posts : 412
Posted 10/18/2014 1:53 PM (GMT -5)
Remicade put me into remission pretty quickly after long (9 month) flare. Had many of the symptoms you describe. I went to work but didn't eat until dinner. Wasn't a good way to live. Flare stopped completely within a few weeks of starting remi.
If your quality of life is anything like mine was, I'd say "go for it" despite having had adverse reaction. BUT only after trying other options. The truth is that they still don't know what the biologics do to our systems... near-term and long-term.