Remicade not helping

[mharvey90]

A real quick rundown-
I've been flaring since March of this year. Started on Remicade, had 1 dose, then two weeks later had a 2nd, and 4 weeks after that had a 3rd dose. I am now getting a dose every 8 weeks.

Two days after my first treatment, I thought it was a miracle drug and that I had slipped into a complete remission. However, this great health only lasted about a week or two. The same thing happened after my 2nd and 3rd treatments- two days later I feel amazing, but it fades away and I go back to square one after a week or two. I was also treated with Prednisone for 6 weeks during this period, and I am back to square one after tapering off.

My question is, has anybody else experienced this frustrating cycle? And if so, did your doctor switch you to Cimzia or Humira, and did that seem to help better than Remicade?

From what I understand, Remicade, Cimzia, and Humira, are nearly identical drugs, but just have different proteins. My doc mentioned switching to Cimzia or Humira if my next dose at the end of August causes me the same cycle. Just wondering if anyone has any insight on this, as I am very frustrated that NOTHING is helping my symptoms, and I start my second year of college at the end of August and NEED to be feeling better by then!

 

[My Butt Hurts]

Although those drugs are similar, they are different. Humira worked very well for me. It kicked in on day 6 and I had a great remission. It only lasted for 4 1/2 months though. I have been on Remi for 8 months, and again I am in remission. I am on Imuran and pentasa too. Maybe you need another mild drug, one of the -asa's to pick up the slack between infusions?
Sorry my answer is backwards from what you were asking, but there it is.

 

[thesugardog]

Although I never had a cycle with Remicade like you are describing, I noticed a few days after my first infusion that things were getting better. I too figured it was a wonder drug, but a few days later all that "wonderfulness" disappeared. I had 4 other infusions, none of which did anything for me. My doc and I discussed using other drugs like Remicade but decided not to go that route since nothing I've tried has had any effect.

Started Tysabri on Wednesday but I'm still wondering if a combination of milder drugs would have done the trick.

 

[mharvey90]

I actually just started Imuran about a week ago, so I help that will help with my in betweens.

I've never heard of Tysabri until I've seen postings about it on this forum. Has it helped you?

 

[Mark33180]

I have been taking remicade for 8 years, and i have always been fine untill about 2 years ago, I had to get the dosage increased, then about a year later i had to have the frequency increased from 8 weeks to 6 weeks. Just let your doctor know and they can safely tweak the dosage to fit your body's reaction to it

 

[mharvey90]

I was actually on Remicade about 7-8 years ago after I had my terminal ileum removed and was still having some problems. However, Remicade was not yet widely used as a maintenance drug, and I was only given 3 treatments of it. I started it up again this April due to my first flare up in 7 years. My dosage was increased once due to me gaining about 5 pounds. I am still feeling terrible, and my next dosage is in about a month from now, and my doctor said that he will increase the dose if I am still not feeling up to par. Thanks!

 

[ErinDF]

I had this same exact problem. My doctor has switched me to Tysabri (search it on the forum...and other places...) I have also had a temp. ileostomy done, so I can't say for sure yet whether Tysabri is helping, but I'm doing much better. Tysabri does have some possible side-effects that some people on this Board find unacceptable, but I haven't had any problems.

Tysabri works in a different way then Remicaide (I don't entirely understand it) so its a decent option for people for whom Remicaide did not work.

I was also on various weaker drugs for a very long time (8 years) before I started REmicaide, but they had stopped working for me. So my options were somewhat limited.

 

[thesugardog]

I actually just started Imuran about a week ago, so I help that will help with my in betweens.

I've never heard of Tysabri until I've seen postings about it on this forum. Has it helped you?

I've only had one infusion about a week and a half ago and I feel no different. I'm hoping that it just takes a little time to kick in!

 

[s.a.m.]

I have had 3 infusions of Remicade so far. This weekend I had to have a small abscess drained (which was the original reason I started Remicade, multiple abscesses)
Has anyone else had a similar experience on this drug?

 

[mharvey90]

I had my 4th Dose of Remicade today and had a severe allergic reaction to it...I couldn't breathe at all and had to be given oxygen. It was really scary...I also reacted during my 2nd infusion but it was minor so my dr. figured we'd give it another try. My 3rd time was fine, and today during my 4th was really really bad so now I'm going to be starting Humira.......if my insurance company approves it. *sigh*

 

[shmooda]

I had the same reaction to you with the Remicade. After 4 months I got so sick the day after that infusion I had to be put in the hospital. I am now on a Phase III clinical study of MLN0002 and that seems to be working quite well. Good luck!

 

[My Butt Hurts]

Good luck Mharvey - I hope your insurance company approves the Humira.
I was on it for 4 1/2 months, the shots aren't bad at all, and it is SO worth it if it works!

 

[mharvey90]

Thanks! Why were you only on it for 4 1/2 months, if you don't mind me asking? Did it just not work for you?

 

[kjhngisd]

fwiw, our doc told us that he would not stop and start Remicade. He said that since it's a biologic, the body can develop immunities to it. Once you start, you never stop. Once you stop, you don't restart.
Not sure if that was just his opinion, but you may want to do some research on it. If he's right, it explains your reaction to it.
--keivn

 

[scaredypants]

I have the same problem! I felt like superwoman for exactly 1 week after my first remi treatment, and now I feel absolutely no different than I did before starting treatment. What a waste if $$. I'm only just finished my 3rd treatment a week ago, but I'm annoyed at having that teaser of a wonderful week, and now, nothing! I am avoiding colonoscopies tho, yes I know, I know what you all about to say. But I find them extremely painful! The painkillers do NOTHING for me. So I don't know if I should continue or change drugs. Just wanted to tell you that I'm in the same boat!

 

[Hope345]

M Harvey,
It was only until my daughters 5th treatment that we see she is almost in remission. It was frustrating, but worth the wait. they performed the calprotein and her results went from 1200 in April, down to 190 earlier this month. It went from severe to mild. Hang in there, it was worth the wait for us. Plus we saw a huge difference when we removed lactose and milk fat from her diet. I hope you heal quickly. Take care

 

[Christina43]

You are lucky. Congrats that your daughter is almost in remission from Remicade.
All of those things I have removed from my diet including fatty/greasy foods, fast food, and red meat and was on Remicade for a year with Imuran before being switched to Humira which doctors have kept me on since with Imuran since. Remicade made my body sore, cause bruising all over, and made me extremely tired.
I have never been on steroids for crohns disease though.

 

[DAVID KINGHAM]

A real quick rundown-
I've been flaring since March of this year. Started on Remicade, had 1 dose, then two weeks later had a 2nd, and 4 weeks after that had a 3rd dose. I am now getting a dose every 8 weeks.

Two days after my first treatment, I thought it was a miracle drug and that I had slipped into a complete remission. However, this great health only lasted about a week or two. The same thing happened after my 2nd and 3rd treatments- two days later I feel amazing, but it fades away and I go back to square one after a week or two. I was also treated with Prednisone for 6 weeks during this period, and I am back to square one after tapering off.

My question is, has anybody else experienced this frustrating cycle? And if so, did your doctor switch you to Cimzia or Humira, and did that seem to help better than Remicade?

From what I understand, Remicade, Cimzia, and Humira, are nearly identical drugs, but just have different proteins. My doc mentioned switching to Cimzia or Humira if my next dose at the end of August causes me the same cycle. Just wondering if anyone has any insight on this, as I am very frustrated that NOTHING is helping my symptoms, and I start my second year of college at the end of August and NEED to be feeling better by then!

Hey buddy!.I just finished my 3rd dose and supposed to be on maintenance every 8 wees now u til the doc decides different. I've experienced exactly what has happened to you and am so disappointed. Had my hopes set on it working as i can't take another bowel operation so wasn't sure if i had any other options. Interested in what you have said about other treatment ass have not herd of them before.I will try and check them out and see if i get any where.Doubt it as it took me a long time to get REMICADE as they didn't really what to pay.Thanks for some sunshine for me and i hope it goes well for you.Be strong and just keep remembering how much has changed so quick,All the best.kushdy..mcl

 

[Splasher]

I had similar, my first dose i felt amazing, then it started wearing off a couple of days before i was due my 2nd dose. I had a bad reaction during the 2nd dose but they continued it once i settled but i felt extremely tired, weak and in pain after it and my doc has taken me off it, now to start humira or go for surgery

 

[orchid81]

Hello. I am on Remicade also. I had intestinal surgery in June of this year which removed part of my small intestine and part of my colon. I have had three Remicade infusions so far. The first one "worked" and the third one "worked". I had the last one about 4 weeks ago and I am in pain again. I feel that the only reason it "worked" at all was because I wasn't having a flare-up anyways. Prior to my surgery, I was on Humira, which didn't work for me at all at that time. I am getting frusterated as you are. This is a "process" to go get these infusions, and an expensive one at that. It might be that certain drugs just do not help certain people.