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Remicade good or bad news?

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Ulcerative Colitis
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Posted 5/3/2017 6:23 PM (GMT 0)
I am a relative newbie to colitis. It came on really fast in February for the first time although first diagnosed with proctitis I ending up being diagnosed with pancolitis and hospitalized. After being steroid refractive i had remicade for salvage therapy. It kicked in and my crp dropped immediately. A week later my symptoms subsided. I have had 3 infusions since. One a week later then 2 weeks later and the most recent 4.5 weeks later. The GI wants to be liberal on the dosing. I recently had my trough levels checked but in Canada it takes two weeks to get the results.

My symptoms although not even close to what they were prior seem to show themselves slightly between my latest infusion. Less formed BMs, slightly more urgency and a very small amount of blood. My CRP prior to the infusion was 1.4 mg/l and normal. Again the symptoms were nothing like when the disease was out of control. The next day after the remicade infusion i am perfect. All symptoms seem to vanish. Is this normal? Is it a sign that the remicade is dissipating very quickly due to the severity of my disease or simply that the remicade is working and I may need more frequent infusions for the first year?
Thanks for your advice folks,
Posted 5/3/2017 8:21 PM (GMT 0)
Remicade is really flexible in dosing: weeks between infusions can vary, and dose per infusion can vary. Minimum dosing is 5mgs per kilogram every 8 weeks. Maximum dosing is 10mgs per kilogram every 4 weeks. You can get anything in between (5mgs per kilogram every 6 weeks)
Posted 5/3/2017 9:19 PM (GMT 0)
is remi the only drug you are currently taking ?
Posted 5/4/2017 1:12 AM (GMT 0)
I am taking methotextrate weekly. Also salofalk enemanas and meslamine tablets. I have a 7.5 prednisone taper going right now.
Posted 5/4/2017 3:09 AM (GMT 0)
Sounds like you have a good plan. Be patient, as healing with ulcerative colitis is much, much slower than you or I truly want it to be. It sounds like you have an initial response which is wonderful and a great sign. I had my first positive response a week after my second remicade infusion, a much bigger response a week after my 3rd infusion, and slow but steady progress until I reached a remission after a year on remicade.

Some do loose response the last week or days prior to the infusion. Ask your doctor to decrease your remi infusion interval (for example from 8 weeks to 7 weeks). The infliximab serum concentration and antibody test is a good diagnostic test, however, clinical response and return of symptoms prior to an infusion are usually enough to warrant moving up infusions. Some of us just require more medicine to control our UC than others do. You could be running out of remicade between infusions and more is better in that case.

For best results with remicade, it is good to at least initially be on an immunomodulator concurrently and you are with your methotextrate. Immunomodulators help reduce the odds of remicade-antibody formation which would make remi less effective. Usually a dose increase counteracts any antibodies formed.
Posted 5/4/2017 5:45 PM (GMT 0)
Thanks John,
I agree patience is the key and I can see it like a torn ACL.
The trough levels will be important but my GI says I would have had much more significant symptoms if the remicade was not still in my system and being effective. In Canada my insurance will pay for more frequent infusions so I will monitor trough levels and symptoms.
I know I need to be grateful from where I was 6 weeks ago to where my health currently is!
Posted 5/4/2017 6:51 PM (GMT 0)
iPoop is probably one of the most trusted sources here, he's done plenty of research that he's cited and has been around for a long time to hear a lot of peoples stories regarding things they've heard from their doctors.

My experience was the same as iPoops. I was on remicade (double dose, 6 weeks) for about 8 months with azathioprine and had no issues at all whatsoever. No side effects.
Posted 5/4/2017 7:40 PM (GMT 0)

naturalcures said...
I'm new to this forum and it sure looks like ths ipoop member doesn't have doctor's credentials on how to advise you about dangerous drugs. It's okay to listen about advice but otherwise learn by yourself doing research and trust doctor's opinions and not people who think they're as wise as doctors.

My little brother never had epilepsy but got it 10 months after Remicade began and at 40 years old, after having 8 seizures/day he passed away in his sleep.

And the doctor's claimed it would help his ulcerative colitis even though it was minor but still there. Beware of this drug and take others because just the thought of getting seizures is a terrible thing to happen for anybody and nobody who takes this drug is invincible to epilepsy in the future even though everybody thinks they are.

Im very sorry to hear about what happened to your brother. And of course you're correct about ipoop not being a credentialed doctor. Where you loose me though is that ipoop was just letting the original poster know about some basic information regarding Remicade. He wasn't exactly writing an infusion order, now was he? You actually took time to write out that people should listen to their doctor's opinions. That's such an obvious statement that it doesn't need to be mentioned. That's like telling an adult not to stare directly into the sun. Then just a few sentences later, you appear to criticize your brother's doctors for suggesting he go on Remicade.

I've actually read things on here that I mentioned to my son's doctor as possible treatments. And she agreed to try them. And guess what else, they helped my son.

Taking Remicade, or any medication, carries certain risks. I think everyone knows that. You have to weigh the potential benefits with the risks. A doctor once told me that a drug can be safe or it can be effective, the more it is of one, the less it will be of the other.

Post Edited (NiceGuyEddie) : 5/4/2017 1:44:16 PM (GMT-6)

Posted 5/4/2017 11:32 PM (GMT 0)
Lol nobody here is a doctor, nor do we have MD in our sigs. Nothing about the username iPoop leaps out me as being a medical professional *shrug*. I've been reading this forum since 2012 and his story is the first I've read of that. I'm truly sorry that happened but it's anything other than a common occurrence. There's many, many more who've been helped by that medication and that's a win win.
Posted 5/5/2017 12:23 AM (GMT 0)
Whatever naturalcures!!
I promise you that I have done more research but and investigation of the pros and cons of ifliximab that you have ever done. What ipoop and the forum offers me is the finer details of symptoms that can and do occur during the process in which neither research nor my doctors can give. Thanks for you advice but I know exactly what I am doing and where I am getting my advice.
Posted 5/5/2017 12:36 AM (GMT 0)
you appear to criticize your brother's doctors for suggesting he go on Remicade.

It depends. If someone has tried other medications such as mesalamines and rectal meds, which are much safer with far fewer and less dangerous side effects, but wasn't helped then I can see escalating to a far stronger biologic. It's when doctors order biologics from the getgo then I think patients should seek a 2nd opinion from another doctor.

The OP is already on Remicade and there are members here with a lot of experience with that drug and can offer valuable advice.
Posted 5/5/2017 2:21 AM (GMT 0)

IamCurious said...
you appear to criticize your brother's doctors for suggesting he go on Remicade.

It depends. If someone has tried other medications such as mesalamines and rectal meds, which are much safer with far fewer and less dangerous side effects, but wasn't helped then I can see escalating to a far stronger biologic. It's when doctors order biologics from the getgo then I think patients should seek a 2nd opinion from another doctor.

The OP is already on Remicade and there are members here with a lot of experience with that drug and can offer valuable advice.

I agree with everything you said, but that wasn't my point. My point was that the poster whom I quoted (naturalcures) stated the other posters aren't doctors and it's important to listen to your doctors opinions. Then two paragraphs later is criticizing his brother's doctor's opinion to use Remicade. That seems at least a little contradictory.
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