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Humira not working anymore-likelihood that Remicade will?

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Ulcerative Colitis
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Posted 2/3/2010 9:59 PM (GMT 0)
I am assuming I have slowly built up antibodies to Humira. It worked like a charm for the first 10+ months, since then I have had to add in other things. Then with this latest flare, I feel like it is barely keeping me out of the hospitalization danger zone. I called the GI today and left a message-I know they will want to keep me in this trial for as long as is possible, but I am getting weaker by the day, despite my best efforts.

Anyway, what do you think about switching to Remicade? I am wondering if it will work at all, or if since it is so similar to Humira if it will be likely it either won't work or won't work for long. Thoughts?

I don't do well with steroid rectals, so i think I will push for Rowasa-the Canasa was fine before, but now I can tell from my bowel sounds that my inflammation is much higher up than it can help.

Thanks for any input!
Posted 2/3/2010 10:07 PM (GMT 0)
I would say it's definitely worth a try. I'm getting ready to switch the other way and hope Humira provides some relief. Hope things turn around for you soon. It's hard to flare and be a mom.
Posted 2/3/2010 10:56 PM (GMT 0)
I read a post on dragonpack recently (a site for parents of children with IBD) which referenced some research which found that if it is possible to switch between the biologics and that someone who has responded to one has a better chance of responding to another. You can have a look at the site, the tread was posted in the last week or so.
Posted 2/4/2010 12:57 AM (GMT 0)
definately worth a try... my sister has tried both (the humira and the remicade) she stopped responding to both over the years... :) hope everything works out!
Posted 2/4/2010 2:43 AM (GMT 0)
I would give it a shot. Just the method of delivery of the exact same drug can make a huge difference. Getting shots in the stomach does not work well for me, but the IV delivery does.
Posted 2/4/2010 4:52 AM (GMT 0)
I would also say that it may be worth a try. However, I was on Remicade for severe UC for a little over a year and we had to keep shortening the frequency and increasing the dosage of the infusions. Eventually we reached a point where it was essentially doing nothing. =/ My doctor suggested possibly trying a clinical trial of Humira... or surgery. I opted for surgery. Obviously surgery is a HUGE decision, but I had my entire large intestine removed in April of 2009 and I am so glad that I did. A lot of gastroenterologists don't like offering the idea of surgery (I was lucky to have a doctor who was very straight forward with me) so you may want to bring it up and see what they say.
Posted 2/4/2010 2:19 PM (GMT 0)
Thank you all-sounds like it is worth a shot anyway. Hopefully if they switch me, it will work well enough to buy me some time at least. I called them yesterday-haven't heard back yet, but I am interested to hear what they want to do next. (I think switching to Remicade is probably the best bet at this point)

100k.runner, thank you also for your input. I am not ready to take the leap to surgery yet. Mostly because I am hoping we can have another baby, and being closer to 35 than 34 now, I would like to get it done and close up the baby making shop. Another consideration is getting the necessary tests to determine if, in fact, I have crohns or just UC. There has been some discussion about that, and obviously it would be a game changer when it comes to surgery. But more and more these days, I think that if surgery is an option for me, it might just be the best thing. Living like this is not a way to live at all.

Thanks again, everyone!
Posted 2/4/2010 2:24 PM (GMT 0)
sure, if your GI is agreeable give it a go! I just did the opposite, switched to Humira from Remicade, & it does seem to be helping more than the Remicade was, at least much more than my last 6 or so infusions helped! Even though the drug is similar, the antibodies your body will make are not the same, so it stands to reason that it *should* work better for you, at least for awhile. I don't know though, if your body has some sort of antibody memory going on, where it's likely to make antibodies to both drugs rapidly. I too am somewhat hesitant about surgery, but I'm pretty sure that if/when the Humira quits on me, I'll be more than ready to go into surgery. What else can one do? I've tried it all, some things help, some don;t, but nothing gives me %100 relief. Plus, I worry about the drugs all the time, always afraid of getting sick, etc. That's no way to live. Also- 100k.runner- have you gone for a jpouch or a perm ileo? Are you happy, feeling ok, etc? I am not a jpouch candidate due to an RV fistula, so a perm ileo would be my choice. I'm ok with it, after doing hours & hours of research! Like you Supa, there's some unsureness as to whether it's Crohns or UC with me- I don't care & don't wish to undergo the testing to prove one way or the other. And for what it's worth, there are many women on jpouch.org who have delivered children just fine with both a perm ileo & a jpouch- having a child is definitely something you are able to do post-surgery!
Posted 2/4/2010 4:34 PM (GMT 0)
Thank you EvaLou! I just talked to my GI and they are going to terminate me from the study next week and get me on remicade. (we are gearing up for yet another round of snow-they are calling for 16-24 inches, so hopefully I will be able to actually see them next week!) Hopefully it will work. I worry about the drugs too, and I wonder about antibody memory or something-I am not sure what to expect with Remicade. I fully expect that if it does work, that will be temporary, and after that, I figure surgery is my option. But I do want to find out about the crohns thing at some point. I guess we'll see what happens. But like you, I am running out of options here-it is only a matter of time before surgery comes up.

As far as having another baby, I think my wanting to do it before surgery is more because of my age. I had hoped we would try again this fall, and I really don't want to wait beyond that because I want to be done with bearing children, so having surgery and then recovering from it would likely delay that process, which is not something I would like to do if I can help it. If that is the only option, then so be it, but if I can be done with the baby making first, that would be my preference. Even if that means bumping up our TTC efforts (assuming my hubby will agree, of course) to spring or summer. But I will be 35 in May, and to be quite honest, I feel like I am getting old for this stuff! If I had had my way, we would have had our third by now, but with the Humira trial and everything, we held off. Some days though, I wonder why I can't just be satisfied with 2 and be done with it!! Oh well...we'll see what happens.
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