When to give up on Remicade?

Hmmm, hard to say. I was one of those that saw improvements within a few days after my first infusion. I know they say that it takes at least 3 doses before you have enough in you for it to be working at full strength. I'd say give it a few more.

I did fine on it for about 3 years, then they had to double the dose to keep it working. Just recently had to stop the infusions due to some other issues, but it was a great drug while I was on it.

Hang in there, I hope it kicks in soon.

I was told 6 months. I didn't start to feel better until about a week after my third infusion. IIRC.  Remember to consider how ill you were before you started the infusions.  I was improving so subltly that I didn't full realize how far I had improved at first until I thought about how sick I had been.....

It never hurts to ask, and showing the GI that you are doing your homework will look good.

Did you do the load-dose to start out with? I immediately got results in the first few weeks of getting the load-dose. I also stopped using it when I reached the maximum you can have and it had no effect on me. (But previously did.)

For me later the day of my first infusion, I started to feel better.

Hi, just popped in on this while looking for dental problem info relating to Crohn's. I do have a general question for all. Have any of you gone Gluten-free? I ask this because Celiac Disease/Gluten Intolerance can cause symptoms of Crohn's and many other diseases. I noticed that a lot of you have multiple immune problems. I have gone Gluten-Free in the last year and it has made a big difference. I still do my Remicade, Asacol, Colestipol etc, but have much less other problems since. I also have Lupus and Sjogren's, but they are also better since going GF.
It's not easy going GF, and I cheated the first time I tried to do it, but now I am totally GF and feel much better.

Just curious.

I thought it relates because if someone is having problems with meds not working or lessening in effect, this might help some people. I have gone through lots of problems with meds over the years because of the undiagnosed Crohn's, Lupus etc. But I am doing much better and the Remicade etc. seem to be working better since going GF.

Being Gluten intolerant can wreak havoc on your body. If something is blocking your body from using Remicade to it's fullest, then you might have problems getting relief. I did not have an immediate response to the Remicade, it took quite a while, but being GF has upped the relief I'm getting. I will be asking my Dr if we can lower the dose soon.

If you want to know what Gluten can do to your Crohn's etc, look at some Celiac sites. Even if not diagnosed with Celiac you could be Gluten intolerant and no one would pick up on it. Here's a list of some symptoms http://surefoodsliving.com/celiac-disease/symptoms/

You could also do a food diary and try food elimination diets. All of this can affect your treatments. So while you're trying one new treatment after another, it could be a food-based reaction.
BTW, I started getting sick in high school and it took me until I was 60 to get a diagnosis. it took until 61 to get some relief and after years of research, going GF is one of the best things I've done lately (and something my Dr wholeheartedly agrees with). If you didn't have Gluten intolerance before, you may have it now because of the damage to your intestines.

Just thought it might help - didn't mean to step on anyone's toes.

Post Edited (Zanne101) : 5/29/2010 1:19:32 PM (GMT-6)

It wasn't something where I could say definitely a month, 2 months or ? I was on heavy doses of Asacol after coming out of emergency bowel resection, so I was a mess already. I had multiple fistulas and abscesses. After I got somewhat stabilized and my gut was out of post-op uproar, then I was put on the Remicade. I do know it wasn't immediate. I want to say it was about 3 treatments before I felt a little better. It has steadily gotten a little better, but really changed after I went GF. That too, was not immediate. It all took time for me, definitely in stages.

I have a cousin who was on Remicade for years, but it was no longer working too well for her, so she's now on Humira. But other people can't tolerate Humira or get no relief from it so it's a toss-up.

This is why I comment about food intolerances. It doesn't matter what treatment or meds you're on, if you're fighting against your body's own healing possibilities. Your body wants to heal itself, but you have to help. You can't isolate just one thing as the problem - it's always multi-faceted. I didn't think this way for a long time. Lots of research, meetings, talking to lots of folks - I have learned as much as I can and keep updated on anything new. I like having some control over my own body. Drs have their own set of prejudices regarding diseases.

The other thing you have to think about is that European MDs are all taught about this gluten/food intolerance problem and how it affects the rest of your body. But U.S. Med Schools have never gone into it. My GP actually still thought that Celiac was a disease of children. Celiac and Crohn's overlap. Luckily I found a GI Dr who knew about gluten.

You're in AZ. I've been trying to move out there - you have the Integrative Med. Ctr at ASU in Tucson, where Dr. Weil set it up. That is going to be my first medical appointment. If you can get there, unless you don't ascribe to his methods of medicine, you might find some new ideas and/or help in treating your situation.

BTW, when I finally got tested for Crohn's, my doctor was amazed. He said he had never seen numbers that high for a Crohn's result in all the years he's been a Gastroenterologist.

So do your research, ask lots of questions and try to help your body. Maybe your next treatment will be the one where you notice a difference. My Remicade dosage is double what most people get, according to my nurses, so maybe your dosage needs to discussed with your Dr.

Good luck, hope something good happens soon.

thanks for the info everyone...i'm just so frustrated as i'm sure a lot of people out there are...i'm having severe pain in my gut when i have to go to the br...puking it hurts so badly...also a bunch of blood...trying to keep my chin up-- i just guess i was hoping Remicade would be my "miracle" drug...

tsitodawg:
Obviously, you didn't read my whole posts with an open mind. I was trying to show what helped me with my Remicade treatments and might speed up relief from it. So, if no thought other than piling on more meds is what you consider a solution, so be it.

I have Crohn's, not Celiac Disease, but my doctor knows about the overlap, do you? Obviously not.

I will take myself off this thread permanently.

I have been receiving Remicade infusions  monthly for two years for a rare autoimmine disease   Which had blinded my right eye and was affecting the left eye.

 

The infusions  prevented the eye inflamation, but I was having  infections in the  kidneys . which responded well to antibiotics

 

I then developed a Squamous cell carcinoma on  my lower lip.

I discontinued  Remicade treatments and the cancer has began to go into into remmision.

Presently i am being  monitored and the  doctors hsve postponed  surgical treatment for the present.

 

It took about 4 infusions before I noticed a real change in my symptoms. It really took awhile for me, over 6 months to notice a significant change. Just got back from an infusion, actually, and July 24th will mark my two-year anniversary of being on Remicade. Stick with it. Honestly, after 3 I didn't really notice a difference.