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Remicade for Maintenance

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Ulcerative Colitis
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Posted 11/19/2009 3:35 PM (GMT 0)
I noticed several of you are beginning Remicade. You should ask your doctor about long term plans with the drug (after remission).

If you get into remission, take plenty of maintenance drugs to keep you out.

Posted 11/19/2009 3:56 PM (GMT 0)
well, one can develop antibodies while on the drug also, I'm a good example of that. It is designed for maintenance use- once you go off it, generally the flares return. However, there are some people who are able to extend their infusions longer & longer apart, every 12 weeks or so at the lowest dose & still maintain remission. And others, like me & .....I forget her name!!!... who are getting the highest dose every 6 or 4 weeks & still experiencing symptoms. I don't think anyone really likes being on it long-term, but it's better than flaring. Plus, for many it doesn't necessarily put you into clinical remission, but enables you to go about your life with minor annoyances. Taking an immune suppressant while using Remicade is also supposed to slow antibody dvelopment. I've been maintaning with it for 3 years now, & doing alright. Not great, but.... ok...
Posted 11/19/2009 3:57 PM (GMT 0)
I have never heard it given otherwise. Once you start it you don't stop until it quits working.
Posted 11/19/2009 4:01 PM (GMT 0)
I have to use Remicade as maintenance...otherwise I'd flare. My schedule is every 8 weeks, although I sometimes push it to 9 because of scheduling issues.
Posted 11/19/2009 4:12 PM (GMT 0)
Does going off increase your chance of developing antibodies?
Posted 11/19/2009 4:24 PM (GMT 0)
From what I understand, yes, going off increases the chance of developing antibodies. I think I remember hearing about it being used to kick people into remission (in countries outside of the US, where it's not approved for maintenance, perhaps?), but I personally don't think that's a good idea.
Posted 11/19/2009 5:06 PM (GMT 0)
     Before I started Remicade this week, the doctor went over the usual maintenance thoroughly.   Hopefully, I will benefit  from this drug soon.  I intend to be on it as long as it gives me some relief.  The doctor said should Remicade stop working, then he would try Humira/ or Cimzia before removal of the colon.  Keeping my fingers crossed.

     I was on 6MP for seven years.  All that it brought me was a two year remission when I first started.  Then my flares became yearly, now three times in eighteen months with the flare lasting in excess of three months.  He tried increasing the 6MP to 100 mgm but it lowered my white count drastically.  I am now off the 6MP as of two weeks ago.

     Do you think that taking prednisone along with the Remicade hinders the benefit of Remicade?  The doctor told me to stay on 40 mgm of prednisone until I see some improvement.  Been on 40 mgm for about ten days now.....no improvement whatsoever.

Posted 11/19/2009 9:30 PM (GMT 0)
I've been on Remicade since July '07 and have been taking it every 6 weeks for much of that time. It's no longer being as effective, but it does help somewhat. Saturday will be my last infusion as I am getting step 1 of my surgery January 12th. Yikes!! But the Remicade bought me some time when I was not ready to face surgery and also the peace of mind to know I tried everything I could, in case I things don't go smoothly for me with the surgery at least I won't be second-guessing myself.


Meesh
Posted 11/19/2009 11:39 PM (GMT 0)
You will most likely go back to whatever state you were in before the remi. In other words, you likely will have wasted a lot of money. It works by blocking production of a specific component of your immune system. If you don't get it, the TNF will come back and bother you to whatever degree it bothered you before. If that's a condition that's acceptable to you, you probably don't really need remi to start with.

I'm on an 8 week schedule. I can go a week past if I have to; if I go two weeks past, I start seeing symptoms again.
Posted 11/20/2009 3:12 AM (GMT 0)
When I started Remicade it was still experimental for UC so the GI really had no plan other than to say I may need to take it "long term". I took for 6 months, went into remission and stopped. I did it again two more times, stopping each time. During the third time I was given the medication too quickly (I realized later) by an in-house nurse and thus developed a severe allergic reaction. The doc stopped the treatment, I got worse, was hopitalized, had to change doctors and the new doctor put me on Imuran.

I'm wondering if I can (now 5 years later) resume the Remicade. I see the doctor tomorrow and will ask. I'm still waiting to see if the Imuran increase works.

Posted 11/20/2009 6:48 AM (GMT 0)
CrazyColitis, Remicade is *nothing* like prednisone is...pred is meant to be used to kick someone into remission, then stopped. Remicade is a completely different medication with a different purpose, and is generally the last medication that is tried. Once you start it, you should stay on it until it quits working (if it ever does...some people have been on it for a long time now and are still doing great). To just use it to get into remission isn't using it as it was designed to be used. I honestly would NOT say you're doing OK on the Lialda. They symptoms you're describing are those of a flare...and honestly, if you're not having a period, that's not good. But, there are many other things to try besides remicade--rectal meds, for one, a probiotic supplement, and your Lialda dose could be increased to 4 daily.

Burli, I'd perhaps ask your doctor about Humira. There's a good chance you'd get your insurance company to cover that.
Posted 11/20/2009 10:55 AM (GMT 0)
Remicade and Humira are both TNF blockers and, from what I've read, seem like safer drugs to try than Imuran. Imuran, or 6MP, is just a lot easier to administer than Remicade. Imuran's also cheap.

I used Remicade like a steriod. I used it to get into remission, stopped and was in remission for 1-2 years (twice).

My problem was that I did not use adequate maintenance drugs to stay healthy. I was only taking 6X750mg Colazal. I would have increased the Colazal and added lialda, VSL#3 and others if I could go back.

Not sure why ppl say Remicade is the last drug to try other than its such a pain to get it infused and it's more expensive. It wasn't my last drug. I would choose it over 6mp from the risks I read about.
Posted 11/20/2009 3:46 PM (GMT 0)
I said it's usually the last drug because that's the path that *most* doctors encourage their patients to take. 5-ASAs, immunomodulators, then biologics. However, when I was in my first flare, said that if the 5-ASAs wouldn't get me into remission, he said that he would recommend I go ahead and move to remicade (but using it continuously, not as a kickstart into remission) and bypass 6MP/Imuran.
Posted 11/20/2009 4:23 PM (GMT 0)
When I went to another GI for a second opinion, he said that he has had a few patients who used took a year of Remicade and then went off of it and stayed in remission with just 5ASAs. Which kinda makes sense since Remicade actually heals the colon, and then 5ASAs can just be preventive measures.
But like everything else with this disease, it's all individual. I can't go more than 9 weeks without Remicade.
Posted 11/20/2009 4:24 PM (GMT 0)
Is it the path most take or is the the path you have heard of the most?
Posted 11/20/2009 4:30 PM (GMT 0)
I'm not sure if you (Burli) are asking me or bookworm that, but I'll answer anyway.
The past that most take, and the path that I hear of the most, is to use the immunomodulators before moving on to a biologic. However, there is a new school of thought to skip the immunomodulators and move on to a biologic after the 5ASA's. I think it's based on a GI's personal thoughts, as well as a patient's. It may become a more popular path once more research has been done to determine the pros and cons of taking that path.
Posted 11/20/2009 4:33 PM (GMT 0)
Burli, is that question directed toward me?
If so...Neither. I've talked to 3 GIs, and only one has suggested it (and he said that if I couldn't stay in remission w/o Remicade, then I should get surgery). Other two GIs agree that Remicade is for maintenance. And it seems that everyone on here is taking or planning on staying on Remicade for maintenance.
Posted 11/20/2009 4:36 PM (GMT 0)
I'm sure there are a lot of people who stop Remicade even though it's working, just as there are a lot who stop the 5-ASA's even thought they're working. When you stop the drug, it stops working. It can take up to a year to get completely back to where you were before after stopping Remi, but you're getting slowly worse that whole time.

Given a scale of 0 to 100, with 0 being no UC symptoms at all, living just as you did before diagnosis and 100 being on the verge of surgery, say you're at 75 on a 5-ASA. Taking Remicade gets you to a 20 or a 0. If you stop the Remi, you will either quickly or slowly go back to your original 75. Then you may or may not be able to use Remi again. Or you may go to 100 and not be able to use Remi. That's why intermittent use isn't recommended.

My feeling is, if your symptoms are such that you would consider risking them again after a few months on Remicade, they may not be severe enough to warrant Remicade to start with. When I went on Remi, I was on long-term steroids, going 20 times a day, bleeding every day and barely able to keep working. Something very severe, like an allergic reaction, would have to occur for me to consider going off Remicade. I just pray it keeps working for me.
Posted 11/20/2009 4:37 PM (GMT 0)
I was talking to you fruitgirl and without causing an argument I'll have to say that unless I read otherwise I'm convinced that Remicade is not the last resort drug for UC treatment. I get a different answer from each GI I talk to and each paper I read as to what the norm is (what path of drugs most GI's follow).
Posted 11/20/2009 4:48 PM (GMT 0)
I wasn't at all trying to argue either....I was just trying to answer your questions, I thought! I didn't mean that remicade is the last resort drug....I meant that it's the last of the currently-approved drugs (in the US) that most patients are prescribed. I defintiely agree that there are other meds/supplements/diets to try, and yes, some people use Remicade earlier on. I think that school of thought is changing, in terms of the order in which to try drugs. I personally will probably skip the immunosuppressants and move to a biologic if the 5-ASA's quit working. It's just that of the people on here who are on Remicade, most of them, especially those that have been on Remicade for a while, used 6MP or Imuran first.

Judy, I definitely agree with what you said about severity of symptoms and risking them coming back by stopping Remicade.  Heck, I feel that way about the 5-ASA's.  They're (knock on wood!) working like a charm right now, and there's no way I'm risking having my symptoms come back by stopping them, and that includes using enemas twice weekly!  Also, I've heard too many stories of people who stopped the 5-ASA's after they got into remission, then flared again, and the 5-ASA's no longer worked. 

Posted 11/20/2009 4:59 PM (GMT 0)
I guess I want to know what you are basing your statement on when you say "most". Because if it's based on the posts you've read in here then I don't believe your conclusion. I guess it's splitting hairs but I was told 5 years ago by someone in here just what you are saying; that Remicade is usually the last drug GI's will try. I found that not to be the case in talking to GI's and in reading information elsewhere. Most may not try Remicade last I would contend. I think its important to state this for others in here. Thanks for the discussion and your opinion. I guess we can agree to disagree.
Posted 11/20/2009 5:07 PM (GMT 0)
I guess it's a combo of what I've read on here, on what my GI said, and on what I heard at a CCFA conference. Both my GI and the conference I attended said that the "usual" path is 5-ASAs, then 6MP/Imuran, then the biologics, but that it's changing. My GI personally recommended to skip 6MP/Imuran, which I plan on doing if the 5-ASA's quit working. I've also read a couple of papers that suggest that it's best to skip 6MP/Imuran, but I've also read papers that go the other way. Really, it's all about personal preference.
Posted 11/20/2009 5:17 PM (GMT 0)
Because of the rapidity of change in the field of treating UC now, it's constantly transitioning. Doctors traditionally move from the most well-known and least potential harm drug to the newer ones or those with more side effects. Because Remicade has only been in use for about ten years, and only about four for UC, the treatment regimen is changing. Many GI's are now beginning to recommend biologicals as the step after 5-ASA's and Pred, but it isn't by any means universal yet.

So really, everyone is right here. And it may change again tomorrow.
Posted 11/20/2009 5:40 PM (GMT 0)
Thanks, Judy, for articulating what I wasn't able to!
Posted 11/20/2009 6:15 PM (GMT 0)

Fruitgirl; I'm impressed at you whipping out the CCFA conference you and your GI attended (you had that Ace in the hole you were keeping from me). Now that's some credibility I can respect as opposed to someone just saying that it's what most in here say. My information comes from reading off the internet, talking to my sister who has UC herself and whose husband in a smart physician plus talking to three separate GI's I've seen.

Now Judy...
You stated some information of your own in an authoritative manner. What do you base your statements on? Where do you get your information from?
I'm speaking of the post where you state that stopping Remicade will result in a slow decline to where you where before you started. Because I don't think this was the case for me. Remicade got me into full remission twice. I did not slowly get worse. Instead, like in the past, I got flares after contracted illnesses which triggered my immune system...such as the flu.

Sorry, but my job is to question where data comes from so I need to at least do it for myself.

Thank you all very much.

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