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Remicade a year after stopping it?

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Posted 6/10/2008 9:26 PM (GMT 0)
My doctor and I made the decision for me to go back on remicade after stopping it in Feb. 07.  I had a resection in June '07 and was technically in remission so it seemed the right thing to do at the time.  Now I have a fistula and will get a seton put in tomorrow. I did well on remicade before and since (at this time at least) it has some documented success rates with fistulas, we agreed that it is was worth a go again.  I'll definitely be premedicated and they'll watch closely, but I can't say I am not concerned about reacting to it after this much time has passed.  Has anyone successfully restarted it after stopping for any length of time?  My other options were Humira (which I tried for a short period and it didn't seem to do much) or Cimizia (which I am trying to "save" in case the remicade no longer works).  Thanks so much!
Posted 6/10/2008 9:46 PM (GMT 0)
patty

you're story sounds exactly like mine. from the halting of the remicade to the resection and the humira that didn't work to the restart of the remicade. AND the fistula. i restarted remicade a couple months ago and had some reactions that were not to serious, but irritating none the less. bad headaches, nausea vomitting, muscle soreness especially in my neck, and some other minor things. i take prednisone starting the day before the infusion and for a week or so after. it helps, but i still have the above reactions. but who knows what reaction i'd have if i didn't take it. I'm hoping the remicade will close my fistula also, but i haven't had great success with the remicade yet. i haven't been getting worse, but i haven't had a miraculous recovery like some people have when they start the remicade. is your doctor putting you on steroids for your premeds?
Posted 6/10/2008 10:23 PM (GMT 0)

Wow!  Thanks for such a quick reply!  She is not a fan of steriods, but will have it ordered to dispensed if needed during the infusion.  She said we'd do the antihistamine and tylenol (which I have done before).  I fully trust her instincts, but am nervous at the same time.  I have had 2 resections (terminal ileum area) and this fistula is a new area for me!  I also take imuran so hopefully, it will help suppress any reactions, too.  I am waiting on insurance approval and just had my TB test today so the earliest I would start would be next week if things fall into place.  It could be 2 weeks or longer if things move more slowly. I forgot to ask her what dosage she would be ordering.  I started out with the regular dose and then it was doubled when I didn't have the results I was seeking.  I am assuming I would start with the basic dose since I am not having severe symptoms at this point (compared to last time).

Were you nervous going in for that first infusion again?  When do you start to show reactions?  During the infusion process or later on at home?  I really appreciate the time you are taking to answer these questions!

Posted 6/10/2008 11:12 PM (GMT 0)
I stopped Remicade for about 6 months before restarting. (Went into a Humira trial, but it never really worked well for me.) When I re-started Remicade my first infusion went fine. It was the second infusion when I had the reaction and then it no longer worked. it was as if I'd never had the infusion after a week.

But, that's just my story. Hopefully you will be able to re-start Remicade and have success!
Posted 6/11/2008 12:56 AM (GMT 0)
I went about two and a half years (!) between infusions, and had a severe delayed reaction when they finally did reinfuse.

Are you on immunosuppressants at all, patty? The chance of reacting should be lower if you are, and have been since your last infusion.

I.
Posted 6/11/2008 3:12 AM (GMT 0)
patty

i'm on Imuran also. It seems to do okay for me, but it's no miracle drug. Yes, truthfully i was scared to death when i went back again for the remicade. I had reactions after the first dose, but they came a week after the infusion. I believe this is because i am on the steroids for a week. about 1-2 days after i come off the steroids the reactions start. but i've been told that my reactions are more rare then other peoples reactions. most people have rashes and what not. do you know how long it will take for your insurance to approve so you can start them? how well did the last remicade infusions work? did you notice a difference right away? I'm really interested in knowing how well your new infusions go since our history is similiar.
Posted 6/11/2008 11:39 PM (GMT 0)

Thanks Lavender and Ivy!

I am a bit fuzzy today--had a seton placed and am still reeling from the anesthesia : )

I had a resection in 1991 --20 inches, slightly more small vs. large intestine and did well with no meds until about the 14th year.  I was able to have two children and other than very quick transit of food, did okay.  However, I ended up with kidney stones (due to absorption issues) as my main problem. 

A few years ago, it all came back.  I had fistulizing intestines and tons of inflammation with a pretty bad stricture.  I did prednisone, which helped somewhat and then imuran, gradually upping it to my optimal dose.  I did remicade for a year--basic dose for about 6 months or so and then they doubled it.  I noticed a marked improvement on the doubled dose and not much of anything with the regular dose (I believe it was the 5mg.??), but still had scar tissue that the remicade could not touch. I tried a course of Humira as a last ditch effort before surgery.  I didn't notice much of anything, but at the point I was really dealing with scar tissue so it is hard to say what the drug can truly do for me.   To add to the complication, I had a kidney stone drop down into my right ureter--right underneath all of the intestinal inflammation mess and it damaged the ureter, causing my kidney to swell.  So, last June I ended up with another resection (all but one inch was small intestine) AND a ureter resection.  It was declared a success (9 days in the hospital)  and I stayed on imuran (50 mg) as a maintenance drug.  I did okay until about Feb. when I started having cramping, etc.  My gastro put me on a course of antibiotics and upped the imuran.  Then, low and behold, at the end of April--my fist abcess!  It was drained by a colorectal surgeon and developed into a full-blown fistula.  So, now I am waiting for approval (again) for remicade. 

I love, love, love my gastro.  She is the best in the area and she is determined to not let this disease take control again.  If I can tolerate it, I think Remicade is a good place to start.  It did help my fistulizing tracts of small intestines previously. . .don't know if it can help with the fistula I have now but I am hopeful.  If I don't respond/become allergic, the plan is to move on to the other drugs.  The infusion part is a drag- half day off of work at the least, but if it works . . .

My doctor's office is putting a rush on my approval, but it is hard to say how long it will take. She would like me to get in next week if possible.  I'd like to get started because I am a teacher and would love to get this loading dose out of the way before summer is over.

Take care!  I really appreciate your thoughts on this!  It is a lot less scary when I can hear how others have dealt with it all.

Posted 6/12/2008 2:20 PM (GMT 0)

After 3 and a half years on Remecade which was working fine(closed both my fistulas almost right away), I decided to try to go off it due to some of the side effects. I was having sever joint pain and swelling, headaches, erectile disfunction...the list goes on. Within a few months both(it's a horseshoe fistula, so it seems like two, but is one interconnected) came back with a vengance.Loaded up on Remecade and began regular schedule with a helping of cipro and flagyl thrown in, which by the way, I hate the two meds. Feel constantly sick and tired from them, yet have been on them for the better part of the last 8 yrs. It's a year later and only one side of the fistula has healed, and the other is still showing no signs of healing. The healed one feels as though it could come back at any given time and is allways tender and painful.Since restarting the Remecade, I have had several reactions, one of which landed me in the hospital as every joint in my body swelled up and I couldn't move for a few days. Since it seems that Remecade will no longer work for me, I will be starting Humira this comming July.

Posted 6/12/2008 4:56 PM (GMT 0)
jlove-Wow!  I am so sorry to hear what you have gone through.  I hope the humira works well for you!  At least you can do it at home with the injections.  I did the pens last year and they were easy to do and not too painful.

Thank you so much for responding!  I want to be as prepared as possible.  Did you have reactions to the Remicade while getting infused or did they come on later?  I never had any problems with the Remicade before, but after stopping for a year, I am concerned that I will go into a full-blown attack right then and there as they are infusing me!  Although, it might be good to have that happen in the prescence of medical care if it has to react at all. 

Take care!

Posted 6/12/2008 7:50 PM (GMT 0)
i stopped twice for about six months each time.   i went back fine both times.
Posted 6/13/2008 3:32 AM (GMT 0)
Personally, Remicade is my wonderdrug. None of the other stuff (never took Imuran or Humira, though) seemed to even slow the fisty drainage let alone help with any other symptoms.

Anyhow, I did five doses in 2007, went off from August until two weeks ago, have no problems or reaction and the drainage stopped with two days...

29 years old, Dx in April 07, no surgeries but multiple fisties
Taking Asacol, 6MP, Remicade, Flagyl, Cipro, Relafen
And bloody well NOT taking Prednisone ever again...
Posted 6/13/2008 12:50 PM (GMT 0)
Hey Patty, My reactions were all post infusion, generally within about 12 hours after. I have had a good run of luck the last few months, with only the joint pain afterwards. I am still hoping that the fistulas will start to heal and have an infusion tomorrow morning. I'll let ya know how things go for me.

Posted 6/13/2008 10:38 PM (GMT 0)
Thanks for all of your responses! It is good to hear some good news stories, too!  I hope I can be one of them, too. Take care!

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