Remicade - My last hope!

I had my third Remicade infusion two days ago. I finished pred 5 weeks ago today. Usually, I begin to go downhill once I come off pred and I generally end up in a major flare after 8-12 weeks off pred. Having been on pred (40mg tapering) 9 times since 2011, and trying every diet and drug available to me, Rem is my last hope! Last scope in August showed left-sided, severe UC - as opposed to my scope in 2011 which showed pancolitis. Humira failed for me too. I haven't noticed the Rem working yet.. my BM form seems to be getting worse and worse so that it is mostly unformed now and just disintegrates! Urgency has also started to return slowly but surely. No b&m at the moment.

I'm just wondering is there still hope for Rem - did anyone find it worked for them after their 4th, 5th, 6th infusions?? Surgery seems to be seeming certain by now! Battling a chest infection at the moment too which I'm sure isn't doing my health any favours!

I gave up on the Remi after the 6th dose. It just didn't work for me. I then had j pouch surgery....no regrets! Good luck...it may still work for you. Hang in there.

I had my 3rd about six weeks ago and I'm contemplating whether to get the 4th one done in about two and a half weeks. I have a different thread about it but basically I felt like I have been WAY worse just before taking the third one, I actually had six major accidents of mush that I couldn't hold back at all, I used to be able to hold it even if I was running maybe a few drops leak out but not like this! I am worried that it was making me worse in that way since I had gone 5 months without having that happen during a flare.

I just started feeling the last few days that I do pretty well during the day and my symptoms tend to come up in the evening overnight and a little bit in the morning when I get up. However I have no idea what to attribute it to. Within the last month or so I made significant diet changes avoiding certain foods, added GI supplements and probiotics, and started prednisone about 2 to 3 weeks ago. to me, the biggest difference began when I had a more positive attitude change. I know that is not the only thing that is helping but no doctor can tell me exactly which one of those things is making a difference and I'm really uncertain about continuing Remicade long term if it doesn't work I'm just not very comfortable with it and considering it really hasn't done much of anything so far and possibly made me worse I don't know whether it's worth it to try!

17 days to make up my mind. I'm somewhat concerned about insurance as well since I'm on a new one and they have not yet paid for the third infusion requesting more information. So I don't want to have a problem if I do get a 4th one, & I am having a problem with the first one I got due to the facility it was done at but I won't even get into that! Hoping I don't end up with a thousand upon thousands to pay. I also am moving a long distance away 1 week after I'm scheduled to get it done, so I will have to find new GI a new facility and all that if I do continue it further and I'm really more interested in integrative medicine at this point.

Woofwoof,

I acknowledge you man. I don't think you are a troll, but rather just giving a viewpoint that is very unpopular on this forum. *hugs*

woofwoof said...
Surgery is not the answer. I speak from 25 years of post surgical experience. In fact if I was in your boots now, I'd be more than happy to try new alternatives such as this www.mayoclinic.org/medicalprofs/fecal-transplants-ddue1012.html I'm so sorry none of this was around when I had Ulcerative Colitis. Now all I can do is look back and cry. Not that anybody here cares that depression is killing me right now. They'd rather just continue with their childish behavior and call me a troll. VIEW IMAGE

There are no colon transplants, but there are a lot of treatments for depression. I strongly urge you to seek them out. You are clearly suffering and we do care (personally I hate to see someone so miserable). However, in addition to sharing your struggles with your j-pouch, you have said things on this forum that I consider inflammatory, offensive, and hurtful to everyone else in the community. You have said on multiple occasions that "God" does not "intend" for people with UC to survive by having colectomies, and that if your options are surgery or death, you should let nature "take its course". I'm very sorry that you have a poor outcome, and even sorrier that you're suffering from depression, but I can't get over the fact that you wish I was dead, and that you've taken it upon yourself to advise other people who might need surgery to choose death instead.

There are many success stories for both j-pouches and permanent ostomies. You don't need to rely on anecdotal evidence: there is a 97% patient satisfaction rate for j-pouches. These numbers have nothing to do with a "pro-surgery agenda," they are simply reality.