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Stopping remicade during remission

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Ulcerative Colitis
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Posted 6/18/2012 8:19 PM (GMT 0)
I had surgery for skin cancer a month ago, and there were some complications with infection, so my regular remicade treatment has been delayed by 4 weeks.

I feel... normal. Not flaring. Not in the bathroom 10x a day, no mucus, no blood. Which sort of blows my mind, and makes me question how badly I need the remicade right now. Remicade was literally a life-saver for me 2 years ago, it was a miracle drug and changed my life... but does it make sense to stay on a drug like this forever, even if I don't need it right now?

My dermatologist said that my skin cancer may have been exacerbated by remicade, and the infection was also likely related to it.

I am feeling a bit torn right now. I don't want to flare. But I'm scared of the side effects of this drug. I am 34 and had a huge piece of my nose removed. I have a 2 year old. I'm scared of cancer.

Any advice, information, links to studies, etc would be appreciated.

(I did talk to my GI doctor who said that he recommends I stay on remicade, but that ultimately it's my decision)
Posted 6/18/2012 8:21 PM (GMT 0)
Oh - my last remission was 3 years... that's a lot of anti-tumor-necrosis meds.
Posted 6/18/2012 8:56 PM (GMT 0)
Oh wow, what a terrible ordeal for you to be going through. Will you need plastic surgery to rebuild the part that was removed?
I hope this is the end of the cancer surgery you'll be needing.

I think you need to be doing what's best for you in the long run. I wouldn't stay on the Remi...truthfully.

I see you're on Lialda....I would suggest strongly that you add Rowasa nightly at this point to your med regimen. If you do well for a period of time, then consider to go every second night...then see how you do and go to twice a week or every third night.

q
Posted 6/18/2012 9:01 PM (GMT 0)
Just my two cents and I agree with quincy, I would not stay on the Remicade. I don't doubt for a second what your dermatologist told you. My mom has been on Remicade for 5 years now to treat her RA. Last year she was diagnosed with breast cancer. Coincidence? I don't think so. Just makes you wonder. I wish she didnt have to go back on the Remicade but she didnt have a choice....there is no such thing as remission with RA. I sincerely hope you stay in remission. Best wishes.
Posted 6/18/2012 11:11 PM (GMT 0)
i also agree with quincy and byebye. remicade does increase the risk of cancer (lymphoma) and it already seems you have been a victim with your skin cancer. even if they say the risk is mostly in adult males, it can happen to anyone.

are you doing well on just the lialda? if you are, i'd stay on that until (if) you flare again. it's not like lialda is a nothing drug- still counts as maintenance. you can always increase the dosage when you flare, but i'm sure you know that.
Posted 6/19/2012 12:48 AM (GMT 0)
Personally, I would try to get off Remicade and get on a different maintenance med. This UC blog makes some interesting points, though:


http://www.everydayhealth.com/blog/scientist-patient-looks-at-ibd-colitis/remicade-infliximab-the-second-time-around/
Posted 6/19/2012 9:50 AM (GMT 0)
If I were you, I would definitely go off of Remicade, just to be safe. If you did flare, I think it'd be better for you to get surgery than be on biologics.

 

Posted 6/19/2012 12:19 PM (GMT 0)
I'm going to be the odd man out and say I would stay on it. Considering the odds, and the fact that my docs have told me that going off and on generally doesn't work, I wouldn't want to stop. Maybe I would ask to space out the infusions or something.

Yes, there are risks involved, and I am so so sorry you have been through having to deal with skin cancer. That is a horrible blow. And an infection on top if it-it just doesnt seem right you should have to endure so much. Unfortunately, everyone can have an opinion about what caused it, but the truth is, it isn't known.

My quality of life on biologics is far far better than anything I have heard from people post surgery. I know that it still could happen in the future, but for me, my goal is to hang onto my colon for now. It is a very individual choice, but I have a young family and this course of treatment is right for us right now. I have thought the same kinds of things-the what ifs and everything. Pred used to be considered a miracle drug, and it does do some amazing things, but they have also found out it does horrible things to the body as well. Who knows if these drugs will be the same. But my instinct for me is to stay on it and maintain my quality of life. Until there is more information proving direct links between these drugs and other illnesses, I am going to trust my instincts. I guess all I could say is that you should do the same. If your instincts tell you to stop, maybe that is the right choice for you. But I would have a plan in mind for what you will do to maintain, and what your next treatment course will be for the next flare.

Good luck-not an easy decision!
Posted 6/20/2012 12:48 AM (GMT 0)
I don't know what I would do, nor do I know what medically you should do but I don't think it's a bad idea to speak with your oncologist and GP and see what they say. It seems clear that your GI doesn't think it's necessary to stop remicade but you're the one who has to live with the longterm consequences (if there are any). You have to do what is right for you.

You do realize that if you stop and restart Remicade, it may not be as effective if you restart in the future? You have to remember that a flare up is a very real and upsetting possibility but at the same time, what you've been through is very serious and you shouldn't take any risks if it's unnecessary.

Would you be willing to accept that surgery may be the next treatment option if you stop Remicade? Other than alternatives and Humira which is similar to Remicade - medically surgery would be the next option (or clinical trials - some with unknown longterm risk).

If you stop Remicade, there is always the option of trying alternatives if you flare up. You could try FT or antibiotic therapy, LDN. There are options - in the eyes of a GI, there is only surgery or biologics after Remicade but I have seen people have luck with other treatments...
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