Need advice about Remicade, please.

Hi everyone, I'm new to the forum. I've been reading posts and this seems like a great place for information and support, with a lot of varied experiences! I'm excited to have found it.

A bit of background...

I began having bloody diarrhea last March, and I seemed to be given every drug possible to stop it (Imodium, Codeine, etc.) My doctor never ordered any tests. Eventually in August I provided a stool sample - no bacteria causing infection, no infection. No doctor wanted to listen to me that I felt that something was seriously wrong. I did my own research online (symptom-based, at the time I was only having bloody diarrhea). I asked my doctor if it was a possibility that I had UC. He said that if I didn't have it in my family, not to worry about it. I began to have excruciating cramps and a distended stomach, vomiting anything I ate, vomiting bile, water, etc. I was going to the bathroom 20+ times a day. I couldn't work or leave the house, I was essentially confined to bed or toilet. My doctor told me to go on a gluten-free diet for six weeks. Desperate, I went to other doctors who were completely no help. I inquired about a colonoscopy and was told that I "probably wouldn't be given one" if I went to the hospital. My mother took me to hospital emergency twice. I was told both times that nothing could be done until I saw a gastro specialist and was perscribed buscopan for my pain (which I promptly vomited whenever I attempted to take it.) I was told I was being referred to a gastro specialist. After calling various gastro specialists' offices, a wonderful receptionist requested a copy of my "referral" - I wasn't actually referred to anyone. She said that the wait to see someone could be two or three months. I cried.

At the end of August I was taken by ambulance to hospital. My potassium was critically low, I had lost fifteen pounds in two and a half weeks. I was hospitalized for four days and finally had a colonoscopy. I was told that I had mild to moderate UC on September 2, 2009. By looking at the sheet I was to give to my doctor, I saw that I had pancolitis. I was placed on Prednizone (sp?) for two months, then 3600 mg/day of Asocol. Thanks to the brilliant people at the pharmacy, I was given the wrong dose and thus was underdosed for two weeks. I eventually noticed that the label was different from the pills and called to confirm a mistake had been made.

Fast forward to the last week of December. Noticing blood and mucus in my stool, stools becoming thinner, body making very loud, unhappy digestion noises (sounding like mutated stomach growls). This continues until now. I had a flexible sigmoidoscopy yesterday and was told that I had moderate inflamation. My specialist said that I could be placed on 4400 mg of Asacol a day, but doubts that it would help. I do not want to be on Prednizone, but inquired about it. He said that it isn't good to go on Pred and go off often. He asked if I had heard of Remicade. I hadn't. He explained that it is "the best drug or UC" but the Canadian Government will not approve it for new UC patients because "they are stupid and think that it's not cost-effective". One of his colleagues is about to start a trial and is doing enrollment now. He asked if I would be interested - I would receive the drug or a placebo, but if I received the placebo and began to become worse, I would receive the drug. We didn't talk specifics on side effects, etc, as I will be contacted with information. He did say that I would have a lot of appointments and that I could not have a child for a year and a half. I didn't think to ask why at the time. He said that they are currently trying to get approval for new UC patients, but that this was my opportunity to try Remicade in the chance that it is not approved for new patients.

I hadn't read about alternative treatments until I discovered this board a few days ago. I've never tried anything like sunflower seeds, spinach, probiotics (unless you count yogurt! *L*) etc.

I am nearly twenty-seven years old and female. I am in my second last year of University and am getting married this August - I cannot afford to be bed/tolietbound. What have been your experiences with Remicade, what were your side-effects, and what would you do if you were in my shoes?

Thank you so much for reading!

Tiffany

I started on Remi in March 2006 and have been in remission since my second infusion. I had been flaring ever since my diagnosis five years earlier.
Some serious side effects have been reported, but they are quite rare. The most common problems are allergic reactions. I've had no side effects other than mild tiredness the day of my infusion.

Here is a link to the manufacturer's website, which has complete information:



http://www.remicade.com/remicade/global/index.html

I would say go for it. I am not and haven't been on Remicade (but am hoping to get on it soon-my GI and I are not seeing eye to eye at the moment), but did a trial for Humira, which is very similar to Remicade. I have zero regrets about doing it. I was nervous in the beginning about possibly getting placebo, but it didn't work out that way for me, and I had a good remission for a couple of years.

Just be aware that it is not a drug you can start and stop, according to the docs. You will build antibodies to it once you stop (or while using it-it depends on how you react), so once you stop taking it, that will likely be it.

Humira comes with the same basic risks as Remicade, and aside from things I can't account for, I had no side effects from being on it.

Welcome to the forum, good luck, and congrats on your upcoming nuptials!!

Thanks, everyone, for your responses. I appreciate them!

Winter, did you try other drugs before Remicade, or were you put on it immediately?

Judy2, thanks for the link - I'm going to look at it right away. :)

Supa, thank you! A lot of planning still needs to be done, but we are excited. about Remicade, do you mean that if I went through with the trial I wouldn't be able to have it anymore (assuming it becomes approved) because of antibodies my body will create? I am asking because if I go through with the trial there will likely be a large gap between the end of the trial and the time it was approved (if it is approved at all).

Subdued, I forgot to mention that I am also anemic (iron-deficiency anemia) but that didn't shock or bother me much, because I have been since my mid-teens.

     I have had ulcerative proctitis for over eleven years.  I ran the gamut of meds as you will see below.  Today I receive my 4th infusion of Remicade and hoping and praying it works.  Right now I am in agony!!!  My first two infusions worked like a dream.  However, after my 3rd infusion I suffered a set back.  Not sure if I had a stomach bug or a reaction to the Remicade....I believe it was a bug.  Anyway, two days later my UP symptoms returned, had to go back on a short course of prednisone.  Been off the prednisone for two weeks but in a terrible flare.

lookingforhealing said...
Thanks, everyone, for your responses. I appreciate them!

Winter, did you try other drugs before Remicade, or were you put on it immediately?

Judy2, thanks for the link - I'm going to look at it right away. :)

Supa, thank you! A lot of planning still needs to be done, but we are excited. about Remicade, do you mean that if I went through with the trial I wouldn't be able to have it anymore (assuming it becomes approved) because of antibodies my body will create? I am asking because if I go through with the trial there will likely be a large gap between the end of the trial and the time it was approved (if it is approved at all).

Subdued, I forgot to mention that I am also anemic (iron-deficiency anemia) but that didn't shock or bother me much, because I have been since my mid-teens.

Yes-basically, once you start, you have to stay on it. There are probably exceptions, as there are with everything, but with Remicade as with Humira, most people can't start and stop taking it because if you go off of it, your body will build up antibodies to it and it will no longer be effective. Some people do build up antibodies to it while taking it as well and it stops working. You just never know what will happen! But I wouldn't let that stop you from doing the trial.

How long is the trial? My Humira one was one year for the double blind, but then they rolled us all into an open label study (where everyone knows they are on the med, and they just study the effects), which was 5 years (I only ended up doing about 10 months of that though). Would that be an option? I would imagine that once they get you on it, they will do everything they can to keep you on it. I imagine they could and would go to bat for you. I know my GI has gotten things approved for people by writing letters and such.

I hope that whatever you decide to try works for you-you have a lot of exciting things coming up, and I know you want to be able to be at full strength for those things. Good luck!

I'm sorry to hear that, Christine. :( I hope this fourth infusion works for you!

Yes, Cheeky, I was told that it is not approved for new UC patients right now. I'm not quite sure how "new" is defined, if there is a date cutoff or such. I will be asking a lot of questions once I am contacted about the trial.

Supa, I have no idea how long the trial is. I never thought to ask, but will once I am contacted.

I have to say, looking at the "Important Safety Information" on the Remicade website scares me. A lot.

**9. No posts of copyrighted material. Information copyrighted or owned by any individual or entity other than the person posting should not be posted on the message boards without the consent of the owner.


Yikes! For those of you that have taken/are taking Remicade, what made you decide to go for it after being made aware of all of the negative possibilities that could come from taking it?

**Sorry, I had to take out the copyrighted info..... you can add the link if people want read it.

Post Edited By Moderator (Lonie) : 2/20/2010 8:47:55 AM (GMT-7)

Be aware that all of those reactions are rare, except for allergies, which can occur with any medication.

In my case, I had been in a truly miserable flare for nearly five years, had never been in remission. None of the treatments tried had helped significantly. I was going 15-25 times a day, in constant pain and barely able to continue working. For me, it was a choice of taking the small chance of serious side effects or continuing in a life I didn't want to live. For me it was a no-brainer, and I've never second-guessed my decision for a moment.

Everything with this disease, as with life, is about choosing what risks you care to take, what life-style changes you're willing to live with and what pain you can endure. Good luck with whatever decision you make.

I was diagnosed with Crohns in July 2009.  Since then, I have been on Pentaza and prednisone on and off.  I have been considering Remicade, but wanted to hear from someone who has been on it.  My GI tells me I have a mild to morderate case.  I don't suffer from terrible flares, but I do have bloody stools and terrible stomach noise all the time!  I have seen studies that show sucess in starting off with biolgical meds first rather than stepping up from one treatment to the next.  I guess I am asking if anyone can share their story about remicade and has anyone had terrible stomach noise relieved after starting remicade?

I have posted before that I had a severe, but notably rare, side effect to Remicade after 5 years of bliss on the drug (complete remission, life was grand).
Keep up on your blood work, involve a qualified hematologist to review specific blood panels for Lupus and RH Factor risks and I think you will be fine.
Otherwise, many GI's miss tale-tale indicators in blood work that Drug Induced Lupus, Vasculitis and other more sever side effects are starting.
And by the way....the anti-bodies your body develops that stops the drugs from working? Ummm...they are generally anti-bodies that can create very severe, and systemic, problems.
Moral? It's not as simple as "I developed anti-bodies and now it won't work
....those anti-bodies can be more dangerous than the Remicade, or UC, itself.

Hello from New Zealand..I too have had 3 infusions and after the first one I went into remission right away with no side effects...unfortunately due to stress in my life I am now flaring and require a 4th infusion (tomorrow) I am hoping it will work once more..good luck