Ready to Stop Remicade

 I have been on Remicade every 8 weeks since December 2005. It has done it's job for me and brought me to remission. My recent colonoscopy confirmed this. My Dr. was amazed at how great my rectal area looked (only a Dr. could appreciate that!!!!) since that is where my disease started and was at its' worst. He took biopsies of many psuedo-polyps (which I understand to be scar tissue all through my colon). So, if my biopsies come back clean then I have come to the decision to stop the Remicade. My reasoning for this is: 1) Remicade was the only drug therapy that I was able to achieve remission with, as I tried many other treatments for years before Remicade, with no success.

2) Now that I am in remission then maybe I can stay that way with an oral maintenance drug. My Dr. has prescribed Lialda (3 per day).

3) If I have a terrible flare I can start the Canasa suppositories again too, to help.

4) IF (big IF) I can't maintain remission with oral maintenance/rectal drugs, then I will go to Humira and do the injections.

Any thoughts out there about my "logic"? I don't want to stay on Remicade forever and have wanted to stop the infusions for quite some time. So, going out on top seems sensable - right? Please let me know what you think, or whether anyone else has tried this type of switch successfully. Thanks!!! Your opinions mean a lot to me - as no one understands like you people!

 

Well, it's not that I want Humira, but I need a back-up just in case. And it's possible that my body will build up immunities to the mouse proteins used in the Remicade. It's difficult to get back on Remi once it is stopped. As for my reason to stop remicade: I just don't want to stay on that classifacation of drug for an indefinate period of time. I can't explain it, but I just don't want to be pumping that drug into my system forever. I will never know whether I can stay in remission without the heavy guns unless I try it. I want to try it while things are looking good. IF I can't maintain remission then I'll know that I HAVE TO have the remicade/humira and I will deal with it. But I won't know if I don't try. What if my body does great and I can just take oral drugs and watch my diet, exercise regularly, meditate, etc.? I'm holding on to that little bit of hope, and if it doesn't work out - then I'm prepared for that and I'll know what I have to do. Make sense?

Thanks James. I must admit that I am a little bit nervous. My next Remicade would be April 2, so that will most likely be canceled and I'll be on the Lialda by then. I'm just so curious to see how this goes! I'm thinking that there may be a little "blip" for a while, but then again - maybe not! I'll think positive!

Does your GI know your plan?  what does Dr say about it?  

ChristieAnn, Yes, my Dr. is on board with this. We have discussed it several times and he didn't want to make any changes until after doing a colonoscopy (which was last Friday). I should have my biopsy results tomorrow and then he will give me the clear to fill the Lialda Rx if biopsies are o.k. My Dr. is easy to talk to and is open to ideas or suggestions that I may have. He can't exactly tell me "NO", since it's my body; but, he understands where I am coming from. He recently talked to both me and my husband about this transition and he is willing to let me try this. So, James, I might start the Lialda as early as next week.

Debbie - I know that you've checked this out and have not taken the decision lightly. I completely understand your reasoning.

My only concern is a bad reaction to Lialda... Will you have enough time to see how you react to it before you stop the remi?

I'm so happy that you're doing so well! I'm sure that leaves lots of time to cuddle the really cute grandson you have :)

Best of luck!

Debbie,

My advice based solely on my personal experience, I stopped Asacol/Lialda cold turkey and was put on prednisone the same day (no one thought it would be an issue b/c pred is supposed to help quickly), I went into a horrible flare two weeks later and it lasted a long time and I am still not back to where I was.

If I were in your shoes....I would want to be on Lialda more than two weeks before I was supposed to get my next remicade injection, give it a chance to build up in your system and I would do a full dose of Remicade on April 2nd and a half dose the next time and a quarter dose the time after that. Personally, I would just be really cautious, b/c of what I went through. I would want to taper it or maybe you taper the by weeks instead of doses???  not sure but ........That's my 2 cents.

Also, I am curious, why did you start Remicade before trying Lialda or other 5ASA's before (at least that's my impression, sorry if I got it wrong)?

Beth,
I have considered having the April Remicade treatment, just as you suggested, to give my body time to adjust to the Lialda. I think that's a good point. When I started the Remicade treatments the Dr. wasn't prescribing Lialda for UC yet (2005). I was, however, on Colozal, Canasa, Prednisone and 6MP for almost 3 years before going on Remicade. But, none of those drugs got me to remission.
Sherry,
Yes, as you know, I have been considering this move, not lightly either, for quite some time. Now seems as good a time as any to make the change. I no longer have the stress of a job every day and have time to really designate/donate to taking care of myself. AND we need to get lunch again soon!
Princesscolon,
Thank you for your input. I understand your trepidation to stopping the Remicade. Were you in remission when the Remicade was stopped? I have been on Remicade for 2 1/2 years and have 2 colonoscopies to verify that I am and have been in remission for quite some time. I am hoping that my body will adjust to the change. Of course, if I can't take Remicade again or if Humira doesn't work for me, then I am screwed. But since Remicade worked so well for me, then I have no reason to believe that Humira won't be as effective.

Hi,
Has anyone successfully stopped Remicade. I would appreciate if you can email me [email protected]

Also, any ideas or suggesstions to what are other options if Remicade fails. I don't want to go for surgery.

I was diagnosed with uc last year and have yet to achieve remission. I did get into remission for short period of time using steroids but flared on fast taper.

Thanks in advance.

Are you sure your insurance would cover Humira? Mine would not.

I look at it like this: Remicade is a treatment, not a cure.

That's a tough call- while I understand & agree with your reasoning for wanting off the Remicade, I'd be very leery of messing with the status quo. I also don't like the idea of pumping it into my body indefinitely, but I like that option much better than being as sick as I was before I started using Remicade! Don't forget that Humira is not approved for use in UC yet- you may have a difficult time getting your insurer to cover it. Also, to me they're one & the same- a biologic is a biologic is a biologic! Are you willing to wind up on Humira for years & years also? Another thing- if you stop the Remicade & do have to go back on another biologic & it doesn't work, are you prepared to have surgery? I'm sticking with Remicade for now- I'm sure it'll eventually lose effectiveness as it already has started to do that somewhat, then who knows where I'll go from there! Good luck on your decision- please let us all know what you decide! One more thing- does your GI personally have patients he's been able to transition off Remicade with success? Does he have any stats for you on how many people are able to do that & stay in remission? Do you think you'll be able to stay in remissin forever?!?!? It just seems unlikely- not to be a downer, I really don't mean it like that. I'm afraid you're blowing your last chance, med-wise, if that makes sense. (Wait a minute! I just noticed the date on the original post- who knows whatever happened!!!)

Hi Debbie,

I too am looking to come off my Remicade (been on for 2 years). It has worked great for me, but my diet has been excellent and I eat more anti iflammatory foods than ever before.

I know its been a while since you came off your Remicade, but can you tell me how it impacted you? I'm afraid of getting sick again, but I believe coming off this medicine will work for me. I am just going to leave it in Gods hands.

Thanks,
Shawn

Hi Shawn, and welcome to HealingWell.  I'm sorry that I had to edit your email address out of your post...it is not allowed per forum rules.  You may, however, include it in your profile, which other members can see by clicking on your user name.

 

It doesn't appear that Debbie has been active on HW lately.  Her last login date is 4/13/2009 and the last time she posted was 9/13/2008.

 

-fruitgirl

Post Edited By Moderator (fruitgirl) : 3/6/2010 1:15:18 PM (GMT-7)

I agree with Sue. If you're going to stop Remicade, accept that surgery may be your only option if/when you flare up again. Humira doesn't work for everyone and none of these drugs seem to work forever.

I understand wanting to get off Remicade but if I were in your shoes, I probably wouldn't stop the treatments. I have had a pretty hard time getting into remission as it is so if something were working for me, I would stick with it. It is all a band-aid solution but like I said, until you're ready to seriously consider surgery, keep using the band-aid.