? about going back on Remicade

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SherBear69
Regular Member


Date Joined Dec 2009
Total Posts : 22
   Posted 12/29/2009 12:20 PM (GMT -7)   
Hi, I'm new here... and not sure how these blogs work. Will muddle my way through and learn as I go.  I've had Crohn's since 2002 (only found after I developed a peri-rectal abscess). On remicade from 2003-2009, had different times during that period of additional abscesses. Was also on 6-MP in the past too. GI doc took me off of Remicade in March 2009 , told me studies showed that people doing well after 5 years on Remicade can come off and do just as well. I developed another peri rectal abscess last week which spontaneously broke on it's own and doing my sitz baths and it is still open and draining. Currenly on Flagyl. I have a follow up appt with GI doc early January to discuss further options. I thought that I heard something about the fact that if you go off of Remicade for an extended period of time that they really don't want you to go back on it because the body can react?  Anyone know anything about that?

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 12/29/2009 12:41 PM (GMT -7)   
I have never heard any doc recommending stopping remicade because you're doing well on it! The course with remicade is to take it until it stops working for you, or you build antibodies to it, or you have some side effects that are bad because of it. I've never heard that people who do well with remicade for 5 years, do well without remicade as well. I think your doctor is wrong . . . but the next time my husband sees his GI, I will definitely ask him to ask his GI for his opinion. It is my opinion that your doctor should not have stopped the remicade.

The reason I say that is because there is evidence that once you stop the periodic remicade infusions, your body can build up antibodies to remicade (because there is a mouse protein in it), and if you take it again later on, your body can react very badly to it. It doesn't happen to all people who stop and start with remicade, but it increases the likelyhood. This is the reason why I believe most GIs just keep their patients on remicade instead of episodic therapy (not to mention preventative care).

If you go back on remicade, be sure to have the infusion center know that you are at risk for reactions, and maybe also get the premeds (solumedrol and benedryl) to be safer. Also, you can develop what's called a delayed hypersensitivity reaction (sometimes also called serum sickness, where you get a fever, and your joints hurt very painfully). This can happen up to 2 weeks after an infusion. If this happens, it's best to go to the hospital and take steroids to get your body to calm down.

That being said, it's really a toss of the coin if you'll react negatively to remicade. There is no hard and fast rule that says you will have a bad reaction to remicade because you are starting it again after stopping it some time ago. So, I'd just take necessary precautions (inform the infusion nurses so they know to be extra careful with you), and talk to your doc about serum sickness and see if he can prescribe a course of steroids for you to take if you need it.

I hope you get good relief from the remicade. I also suggest maybe seeing another GI - I have never heard of anyone recommending getting off the remicade because you're doing well on it.

I'll keep my fingers crossed for you.

Hugs,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


SherBear69
Regular Member


Date Joined Dec 2009
Total Posts : 22
   Posted 12/30/2009 8:43 PM (GMT -7)   
I'm sorry, I didn't relay my information correctly. I was taken off Remicade due to the fact that I was having numerous Upper Resp. infections , sinus issues, chronic cough, etc...  None of which I have had since being off remicade. Colonoscopy showed no signs of crohns and GI doc felt  I was in remission and it was a decision between my doc and I also due to the fact that I'm scared of the long term effects of remicade.  I have the utmost confidence in my GI doc, he is the head doc. of the Inflammatory Bowel Disease Center at a large university hospital in pittsburgh. He did say that he has a population of patients who have done well off of remicade. Thanks for your reply., and I'll see what my doc has to say when I see him on Jan7th. 

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 12/30/2009 9:00 PM (GMT -7)   
Oh ok. That makes a lot more sense :-D

If you were having a lot of infections with Remicade, perhaps you can try something of the same class, like Humira. Maybe it'll work just as well as Humira, but without the respiratory infections. Just a thought. Perhaps you can discuss it with your doc, and see if he thinks it maybe be less overwhelming to your immune system, but give you the same good effect on crohn's.

Good luck. I hope you figure out something that works for you with side effects you can live with.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 12/31/2009 2:59 AM (GMT -7)   
I have been on & off Remicade several times. I have always been given pre-meds and did fine. Perhaps your dr should order some pre-meds to ward off any potential reaction. Good luck.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

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