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Has anyone here just "stopped" getting Remicade??

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Posted 1/20/2009 10:21 AM (GMT 0)
Good morning.  Maybe I'm just having a pity-party.  But, I am SO sick and tired of receiving Remicade.  I usually feel worse after getting it.  (joint aches, fatigue, sorethroat, etc.)  I've had the Prometheus test and have not developed Remicade antibodies, so I guess it's all in my head.  I'm just tired of getting it.  Tired of taking off of work that day.  Tired of feeling crappy afterwards.  Tired of being stuck over and over.  Tired of it all.  I just don't want it anymore.  If you stop, does that mean your Crohn's will worsen?  I'm sorry, but I am tired and just needed to vent.  Has anyone ever felt this way?  Has anyone ever just stopped the Remicade?  Thanks in advance for listening, and for your replies.  Blessings, Julie
Posted 1/20/2009 11:22 AM (GMT 0)
Julie,
I stopped Remicade in May of 2007 for some of the same reasons you give. My joint pain was getting so bad, I had gone to a rhuemy thinking it was possibly arthritis. Then I started thinking about when it got worse.........right after my remi treatments! So I asked my gi for a test for antibodies and he said "I didn't know there was such a blood test". Needless to say I immediately changed gi's, stopped the remicade and got a little wiser when it comes to being my own best advocate. I switched to a gi at a teaching hospital and was first evaluated by the gi fellow ---- when I spoke with him about by symptoms and how they corrolated with my treatments he said it was a "no brainer" that I had probably developed antibodies. Since the remicade had me well on the road to remission, I've been able to get by with sulfasalzine, the occasional round of entocort and my nexium. Would you be able to stop the remicade for a short time and see if your symptoms improve?
Posted 1/20/2009 10:37 PM (GMT 0)
Lamb61, thank you so much for the reply and feedback. I have a cal into my GI to see how we should proceed......
Posted 1/20/2009 10:43 PM (GMT 0)
I stopped because I was reacting to it, and it wasn't working any longer. For me, when the Remicade stopped working I get get sicker but when it worked, it was a miracle drug for me.

I switched to Humira over 2 years ago and love it. Have you considered talking to your GI about another medication?
Posted 1/21/2009 7:50 PM (GMT 0)
While you might not have developed antibodies to the Remicade components, your increased symptoms might be a response to developing other antibodies - specifically lupus antibodies. The symptoms you described were many I developed while on Remicade. I too felt worse after my infusions. I developed lupus antibodies and ultimately, lupus itself. I think having a talk with your GI about the issue is very smart. Medications should not be making life worse.
Posted 1/21/2009 8:40 PM (GMT 0)
Ides and Aimee, I am still waiting for my GI to call me back. I feel pretty crummy today. Achy, short of breath, fatigue, etc. Thanks again for your feedback!
Posted 1/22/2009 1:21 AM (GMT 0)
I stopped taking Ramcide 2 weeks ago because i had an allergic reaction to it because of the developing antibodies. ramcide was amiracle for me for about 6 months then stopped. My doctor is going to put me in Humira and I'm hoping that will work for me. i feel for about 4 months that I'm not responding to any type of med's. I guess Humira will Work for me though.

good luck and ask your Dr for Alternative Med's.
Posted 1/22/2009 1:38 AM (GMT 0)

Ides said...
While you might not have developed antibodies to the Remicade components, your increased symptoms might be a response to developing other antibodies - specifically lupus antibodies. The symptoms you described were many I developed while on Remicade. I too felt worse after my infusions. I developed lupus antibodies and ultimately, lupus itself. I think having a talk with your GI about the issue is very smart. Medications should not be making life worse.

Please do not take offense to this, but there's a huge difference between "lupus-like symptoms" and actual lupus itself. Patients tend to make the same mistake when they claim Remicade gave them MS, when in fact what results is a more general demyelinating disorder.

 

Posted 1/22/2009 1:40 AM (GMT 0)
And a note to the original poster, if you are experiencing issues with Remicade, I wouldn't even recommend that you consider Humira or any other TNF blocker...you will respond similarly.
Posted 1/22/2009 4:28 AM (GMT 0)
cbk - No offense taken. I just happen to be one of three people [that I know of] on this forum that has been diagnosed with SLE [Systemic lupus erythematosus] after taking either Remicade or Humira. In my case I took both.
Posted 1/22/2009 5:07 AM (GMT 0)
hi ya julie. i stopped taking remicade in december of 2006. i had started to build the antibodies to it and needing it every 2 weeks instead of every 2 months, and even then it was taking longer to work and didnt work as well. i never experienced the after effects of an infusion like you stated. i was sleepy after wards, but i attribute that to the benadryl. i always felt fine after an infusion. in fact, i noticed i had more energy soon after and felt better and made gains in the gym in regards to strength. but i believe now the medicine just masked my symptoms cos after being on it for like 5 years i developed a fistula from my colon to my bladder which required surgery. so imho, for me, the remicade masked the symptoms and made me feel better but the disease was still manifesting itself and worsening while i was on it. the real reason i stopped taking remicade was because i no longer felt i needed it. at the same time i stopped, feeling it wasnt working any longer, i had coincidentally begun the maker's diet and started to feel a ton better. so to see just how well the diet could get me, when my next infusion came up i skipped it to see if the diet could continue to improve me and also to not have the effects of remicade interfere with what i was doing with my diet. then the second infusion came along 2 months later and i skipped that one too cos i was feeling even better than when i skipped my first infusion. and i've skipped them all ever since. so for me diet helped me. it is not a panacea and no one can make any promises it will help you, but you sound like you are at your wits end. that is where i was when i gave diet its due and really gave it a try. so perhaps this might be something to consider???
Posted 1/22/2009 10:32 AM (GMT 0)
CrazyHarry, a few months ago I made some dietary changes that really seemed to help. I cut out all sugar, sugar substitutes, and any whites (flour.) It seems to be helping. Then, I get Remicade, and I feel crummy. I know you have done very well on the Maker's diet from reading your past posts. I am going to do a search on them now, and also check out the book from the library. I'm still waiting to hear from my GI..... Thanks again! Julie:-)
Posted 1/22/2009 11:22 PM (GMT 0)
My GI just called me back. He wants me to spread the infusions to every 8 weeks, and to take one Zyrtec daily for 7 days prior to the infusion. We'll see if this helps.....
Posted 1/22/2009 11:40 PM (GMT 0)
julie, not that i want to advise you to not listen to your doctor and not take the recommended medications, but the ultimate decision is yours. if the remicade is really making you feel super bad, then perhaps it is not a medicine for you. imho, whenever you take a medicine one should think about the following - is it making you feel better crohn's wise? are the side effects you're feeling acceptable? are the risk of potential long term side effects acceptable? is it improving your overall health and life or is it a detriment? so just stuff to think about and discuss with your doctor and maybe even family.

oh, i noticed you take slow-fe iron. i'd recommend you take a different brand of iron supplement. slow-fe is ferrous sulfate based and is known to cause constipation. go to a health food store and get a different type of iron. i have used solgar brand gentle iron (iron bisglycinate) in the past without any problems. it also doesnt contain sugar, salt, and starches and is supposedly non-constipating.
Posted 1/22/2009 11:57 PM (GMT 0)
Crazy Harry, thank you so much for the reply. The Remicade has helped me tremendously the past couple of years, but I just keep feeling worse after each infusion. I am quite hesitant to get it again. I have a lot of thinking to do. I might try it with the Zyrtec, and then go from there. I just don't know.... Also, thank you so much for the Iron suggestion! As you can see, I have to take Miralax daily for Crohn's constipation and a stricture. I'll check out the supplement you suggested. Thanks again for all of your feedback. It is very much appreciated!!
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