Question for those who have tried Remicade

I know there are topics on this board about whether or not to try Remicade and people have also written about if it has worked for them or not. What I would like is for people who have tried Remicade to write about their experience during the the first three infusions. It seems as though the drug works immediately for a few lucky people, only after the third dose in some cases, and (unfortunately) not at all for others.

What was it like for you? Did you see any improvement at the first dose? After the second? Were you beginning to wonder if it was going to do anything at all and then it miraculously kicked in after round three?

I ask all of these questions because I am currently half-way through the 6 weeks between my second and third infusions. The doctor gave me the "last resort before surgery" talk and started me on Remicade while I was in the hospital last month. I saw improvement within 3 days of the first dose that continued slowly up until my second round. The first two days after the second round were good as well, but since then I have leveled off. I have 4-5 movements a day (mostly in the morning) that include cramping, pain, and occasional blood. By the afternoon I am feeling pretty good though. This is all while still on 50mg of Prednisone, Imuran, and a restricted diet.

I worry that the early effects I saw of the Remicade were a false sense of success and that it may not ultimately work for me. But I also have read that it may take more infusions for it to really reach a therapeutic level. So any words on the subject are greatly appreciated.

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James
26-year-old diagnosed with UC in 2004
3.2g Asacol, 150mg Imuran, 50mg Prednisone, and Remicade (started 5/30/08)
Currently flaring

Post Edited (draegs) : 6/18/2008 5:00:43 PM (GMT-6)

I started Remicade on Saturday and I was feeling pretty well on Sunday. But today I just went back into my normal flare. Hopefully a couple more infusions will make us feel better.

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Female, Age 19, Dx w/ UC August 2007

i started remicade in august 2007 and a few days after the first dose i was doing great, the next dose worked perfectly also and i was great up until the third dose, the third dose worked great up until about three days before time to get the next one, by the fourth dose i was lasting about 4 and half weeks. By Feburary i was back to a flare, and in April i had my colon taken out.

I noticed slight improvements for the first few days after the first two infusions also but it wasn't until the third that i really felt better. It was great. I'm having other health issues so it's hard to say whether it was immediate or gradual (i've been focused on the other issues) but i could tell at about week 7 that i was ready for another infusion. I didn't get a bunch of symptoms or anything i just kinda felt off a couple days before the next dose.

I've had no side effects at all. I'm lovin remicade.

As for your gi's last resort remark. Ask him about humira trials. There is always a possibility that there is a trial going on.

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Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion

I started taking REMICADE shots about 1 year ago. No major changes after the first shots, but after the 3rd one, I was feeling a little better. A little better after the 4th and 5th shots as well, but then it kinda tapered off and I was back to my usual BMs. My doctor switched me from 8 weeks to 6 weeks then 4 weeks, but that didn't make a MAJOR change, although I felt a little better every time, but I still wake up like 5-6 times a night, for some reason (well, to poop...actually, more like GAS 4 times out of 5).

My REMICADE people are now telling me to tell my doctor to DOUBLE the REMICADE dosages (since it WAS working for me, to a certain extent), but my GI is kinda giving up on REMICADE and wants me to try HUMIRA now. Not sure what I'll decide, but there's my story.

I tried Remicade about 15 months ago. The first infusion was great (while also on Prednisone) but it didn't seem to take for me. I got progressively worse (while tapering off the Pred.) and quit the cycle after the forth infusion because I couldn't see any benefit whatsoever. I was also on Imuran at the time.

A couple of days after my first infusion, I thought I might be better, but it wasn't enough of a change for me to be sure it wasn't just my hopeful imagination. After the second infusion, I was definitely better - if I had stayed at that level I wouldn't have been ecstatic, but it was better than my start level. A few days after my third infusion, I could definitely say that I was going less frequently, I was not bleeding and the cramping was gone. My stools continued to get more normal and my energy level improved even more over the first year, when I stabilized. Now I go two, sometimes three times a day, no D, no bleeding, no mucous, no pain. I live a normal life and eat a normal diet.

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I was one who took pretty much immediately to Remicade. When I first began the infusions, I did notice that about a week before my infusion was due, I had loose stools and a little urgency. As time went on, this decreased and I now go about 3-4 times a day; it usually depends on how much I've eaten the day before and also how big the meals were. Sounds crazy, but the smaller meals I eat, the better digestion I have and I don't go as often. A bigger meal gives me more bm's the next day.

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Carol

Remicade - will have my 22nd infusion on June 12.

I did not feel better immediately. I can't remember exactly when I started feeling better but it was sometime around the second infusion six weeks later. My doc has always told me that it takes about 7 days for the effects of a Remicade infusion. I think everyone it affects everyone differently. But I do find it helps most when the docs have tried everything else.

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34 year old female, Diagnosed 5 years ago

Everything has changed quite a bit since I first posted this entry...

Exactly one week ago was my third infusion of Remicade. I can honestly say that, as of today, I am no better off than I was the day after my second infusion. My doctor says that it's more than likely that the Remicade never took with me and that the improvement I did see after the first round was due to some other factor (the high dose of steroids I was on, the lack of eating allowing my colon to rest, etc).

I'm fortunate enough to live half an hour from the Cleveland Clinic and so yesterday I met with one of their colorectal surgeons. He said that after reading my history he felt that I was past due to have the surgery. As he put it, I had more than paid my dues to our disease and that it was time for me to get my life back. He went on to ask me a couple of questions that he said he wanted me to go home and think about instead of answering right away. What it all made me realize is that I've really forgotten what life was like before living in active flare (it's been about 2 years since I was in a true remission).

It was a lot to digest, but I woke up today feeling so positive about surgery. The earliest he can operate is September, but I have to be off of Imuran and Remicade for 30 days first anyhow. So now instead of not looking forward to having surgery, the only thing I am dreading is spending the next two months living through the days I am currently experiencing. Hopefully I will see some improvement between now and then as I am really sick of all the symptoms.

Anyway, i just wanted to send out a little update. I know I like reading about where others are at with their own situations.

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James
26-year-old diagnosed with UC in 2004
3.2g Asacol, 150mg Imuran, 35mg Prednisone, 20mg Prilosec, Fosamax, and Remicade (started 5/30/08)
Currently flaring

Wow draegs, what a turn of events! I'm sorry it turned out this way but I'm really glad you decided to get the surgeon's opinion and are feeling comfortable about surgery. There have been a lot of topics lately about surgery that you might find interesting. Did you discuss which type of surgery you might opt for? Do you think you will be trying the jpouch? www.j-pouch.org is pretty good but the information can be a little scary at times, but as they say it is the minority and doesn't mean you'll have a bad experience.

Good luck and keep us posted! September will be here before you know it and you'll be rid of this disease forever- that's exciting!! :)

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Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar region of the spine from long term prednisone use. 

Currently unmedicated and flaring :(
Waiting for my appointment with the new GI on July 18th. Insurance finally kicked in, hooray!

Hey James, I'm sorry Remi didn't work for you. I get my 3rd infusion next week and if I'm not showing a significant improvement, I think I'll be going in for surgery as well.

Who did you see at the Cleveland Clinic? I have an appointment there in 2 weeks.

ediekristen- The jpouch procedure is what I will be having done. Unfortunately for me, I have more inflammation than they would like and so the process will be a bit more involved. The first surgery will only include creating the ileostomy. Then I will wait six months (instead of the normal three) while my colon hopefully heals some, and thus allow them to save more of it. During the second procedure they will create the pouch and let that heal for three additional months. Finally, I will have the last round of surgery to reconnect everything. It's a long process with extra work involved, but what's nine months to have sixty or seventy colitis-free years? The success rate is 96% and I will most likely be able to stop taking all my medications. The one bit of good news regarding the surgery is that the first stage will probably be able to be performed lapriscopically.

ComedyDork- I met with Dr. Feza Remzi (http://my.clevelandclinic.org/staff_directory/3/Staff_2393.aspx) and was very impressed by his approach to everything, attitude and sense of humor, and his answers to my questions. If for some reason you don't like the first surgeon you meet with, maybe give him a try. I'm also meeting with Dr. Lashner (who is a GI, not a surgeon) in two weeks to go over the best way to taper off the meds before the surgery and get one last opinion on everything.

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James
26-year-old diagnosed with UC in 2004
3.2g Asacol, 150mg Imuran, 35mg Prednisone, 20mg Prilosec, Fosamax, and Remicade (started 5/30/08)
Currently flaring

James--My appt at CC is also w/ Dr. Remzi. I'm so glad to hear that your experience w/ Dr. Remzi has been good so far! Although, if I do need surgery, September (or October) will be a long wait...

Remicade did nothing - but I did enjoy watching tv for a few hours and snacking on Lornadoons. It also gave me a kick in the butt when I felt sorry for myself, seeing people with cancer getting infusions alongside me. That ended my pity party every time.

I did maybe four infusions and the oddest thing happened with the last one. My muscles started aching, like I had done a super hard workout. The day went on and it felt like my hands and legs were closing up like I was a lobster. Went late at night to afterhours clinic and they tell me I have temporary arthritis from the meds.

Saw my GI doc a few days later and she was like, "oh yeah, it happens."

And I'm like, "could ya have warned me?" It was scary.

I seem to be the person where all the new drugs and standard treatments have no effect lol.

I had Remicade infusions from December 2006 until February 2008 ( a little over a year). I only felt well consistently after about 5 infusions. After infusion #4 I thought that it wasn't working too well and I was ready to give it up. My GI encouraged me to keep up the infusions and I was able to achieve complete remission while on Remicade. My last colonoscopy (in March 2008) showed no sign of disease: ie. now inflammation, no redness, no bleeding, nothing at the cellular level. So, when it works, it works well - as that was the only drug that I was able to achieve remission with. It just took me a while to get there.

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Debbie

Hello
I had a C-SCOPE in may 2007 ..my GI told me i was the worce case of Colitis he had ever seen and was thinking surgery ....but we tried Remicade first ...started in Oct 2007 ....the bleeding stop but i was still flaring ...i think i just had # 7 this week and i never felt better so it took me about 6 infusions before it kick in ....now i look forward to getting infusions .....yea it seem to work diferently for everybody i just glad i did not give up .....goodluck to you
PS i was in year and a half flare before the Remicade

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REMIDCADE 10-02-07
generic colazal 3x3 a day

________________
mercaptopurine 50mg 1 1/2 a day


allopurinol 100 mg
rowasa enema pm generic
multi vitamin
folic acid
fish oil

dx 2004 uc

I had my 15th infusion Monday. I feel great!

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I'm still losing tons of blood after two infusions. The stools themselves are "normal" and my energy is a little bit better (I've stopped needing naps!). But the bleeding is definitely in horrible flare mode.

My GI and his nurse have basically lost hope since Remi hasn't done a lot so far--they're banking on a colectomy, which is scary b/c they wouldn't even let me mention surgery about a month ago. I really hope the bleeding dies down after the 3rd infusion (next week), b/c I don't know if I could wait months for a step closer to remission and I might just go for surgery instead.

It was my third remi that really did it for me - but I seem to remember more "better days" after the second.

I wish the best for you - and best of luck going through the next couple of months...if you read my posts during the last week - you will understand why! 

Hang in there and live with your favourite diversion - for me, Netflix.  Good escape.

 

love to all here