My GI recommended Remicade over the others for the simple reason that there is more clinical data establishing Remicade's efficacy in J Pouches. That doesn't mean the others will not work as well or better, and it doesn't mean you will not have a reaction to or develop antibodies against Remicade. Also, the others you mentioned are low on the totem pole choices, especially Imuran. Imuran has been around for a very long time and has lots of side effects. The usual second choice after Remicade is Entyvio, which has a different mechanism of action and shorter infusion time. Stelara and Humira may be preferable options as well.

Never heard of those drugs in combo with Imuran and I would think it would be very dangerous for your liver. I was on Imuran in around 1991 before surgery and it had to be stopped after 1 month because it sent my liver chemistries haywire. It's a very rough around the edges treatment and I heard that 6MP was designed as its more targeted, less side effect laden market successor. So I am not ever sure why Imuran is even in the discussion. I have heard some people are still taking it, but I think some doctors view it as a very primitive treatment since the various biological drugs that have come on the market since the mid 1990s or so.

My profile is same as yours, J Pouch/Crohn's although it may be related to backsplash stool by pattern of inflammation. I took antibiotics for over 20 years with some success before going on Remicade.

Thank you for your response. Very helpful and timely.

I also prefer not to add Imuran because of the side effects of azathioprine which sound like rough, including for you. Didn't realize it was considered primitive and been around so long - since this is really the first treatment I'm considering besides the occasional antibiotics for pouchitis since my j pouch years ago.  Not to mention my first (but not last post) on this forum!

I'm hoping when I go on Remicade that it'll help like for you. Plus I can tolerate it well. Did you have any specific side effects and did it affect your ability to exercise? How are you feeling now?

I got a 2nd opinion who also mentioned Stelera and Humira as good 2L options. Entyvio too but since I was also diagnosed with osteoporosis this fall I was told it won't help for that but Remicade might.

All the Best,

KK I have had zero side effects from Remicade. Some people claim that the infusion the first time they get it leaves them feeling "wiped out" (fatigued) that day, some say they are tired the day they get it. These people may be getting it with Benadryl. Anyway, it's never fatigued me, I never developed antibodies and been taking it for 5 years.

Imuran has been around since at least 1991. I was given Imuran as a last ditch treatment for UC and when it failed and I had to be taken off of it, surgery was inevitable and I had my colectomy in 1992. A lot of people have the liver chemistry side effects with Imuran. I should tell you as well that when I started Remicade, I took it with Methotrexate for around 3 years, but when liver chemistries rose they pulled me off the Methotrexate and they went right back to normal. Methotrexate is given with Remicade to suppress renal secretions of Remicade and to assist in preventing antibodies. But I guess since I had not developed antibodies in 3 years they felt It could be removed. You may need to start with Methotrexate around 12.5 mg and monitor the liver chemistries with blood labs every few months. In fact they will not infuse you unless they have blood labs less than 3 months old.

As far as your other questions I feel great, I gained weight and am out of shape due to Covid but so have many people. Remicade has the pouchitis under control at around 90%. There is some persistent inflammation at J pouch inlet and neoterminal ileum due to backsplash stool. But no symptoms - they were completely eliminated by Remicade.

After being on Remicade 6 months or so you should have a Remicade test to determine therapeutic blood level of Remicade. The manufacturer will send your Doctor a kit on that but ask about it.

Good luck!!

I heard from multiple people that Remicade is more better for Pouchers and there is more data on that coming from a scientific side. I think you should possibly try Remicade first if your gasto agrees.

Inflectra is extremely similar to Remicade (they are called “biosimilars”). You certainly could have different results, but for most people the experience would be identical. The best argument for Remicade is the longer experience with it. The best argument for Inflectra could be a substantially lower cost for some people. Check your insurance and the discount program offered by Remicade’s manufacturer.

While the retail cost of Remicade is crazy expensive (almost $10,000 per infusion), with the Remistart cost savings program, payments made by the manufacturer count towards your insurance deductible. Therefore my $5,000 deductible was  shot with one infusion and my actual out of payment costs for a years supply of Remicade was like $419 on one insurance plan and $285 on another - those are annual out of pocket costs of 8-9 infusions as part of enormous deductibles that are getting washed out due to Remistart payments being made on my behalf. This is why I have chosen the highest possible deductible plans that were offered. Because the Remistart payments count towards your out of pocket. Insurance companies do not care whether your portion comes from you or Remistart. It's a collateral source payment made on your behalf but not out of your pocket. So being on Remicade is actually saving me insurance premium costs.

I don't know whether Inflectra has a similar cost savings program.

Thanks Lauren for your advice on trying Remicade first.

Glad to hear CT that Remicade has worked so well for you.  I hadn't heard about the Methotrexate combo but good to know in case for later.

Dear Scott (and CT) - I understand the cost benefit of Biosimilars but fortunately  sounds like my insurance will cover Remicade. Good to know about Remicade cost assistance and the type of plan you have in case I need to go that route.

The plan after meeting with my GI today is to start the Remicade IV injections (5 mg) in early March.

I'll post again later as to how it going and again really appreciate all your input! 

@KK1110 posted:

Thanks Lauren for your advice on trying Remicade first.

Glad to hear CT that Remicade has worked so well for you.  I hadn't heard about the Methotrexate combo but good to know in case for later.

Dear Scott (and CT) - I understand the cost benefit of Biosimilars but fortunately  sounds like my insurance will cover Remicade. Good to know about Remicade cost assistance and the type of plan you have in case I need to go that route.

The plan after meeting with my GI today is to start the Remicade IV injections (5 mg) in early March.

I'll post again later as to how it going and again really appreciate all your input!

You are so welcome!

Hi Lauren, Scott and CT,

I got my first infusion of Remicade today and didn't have any side effects (so far and fingers crossed).

Thanks again for your input to my questions before. Hope you are all safe healthy.

Kevin

@KK1110 posted:

Hi Lauren, Scott and CT,

I got my first infusion of Remicade today and didn't have any side effects (so far and fingers crossed).

Thanks again for your input to my questions before. Hope you are all safe healthy.

Kevin

Thank-you for the update honey! I am glad to hear that! How long did the infusion take? I usually hear its around 2-4hours

I was on Remicade + Imuran for years without issue (every six weeks). A year or two ago I was switched to Inflectra, specifically due to cost. Not cost for me (as I was in a copay coverage program), but for my provider (Kaiser). The switch was seamless and there was no change in effectiveness. They even do Remicade levels and antibody tests for monitoring the Inflectra, so it truly is the same once it is in your system. Also, I have had no issues with Imuran. The reason for it is to suppress antibody formation.

Jan

Thanks Lauren - the injector took about 3 hours and then they ask me to stay for another 2 hours just to be observed. Sounds like they will speed up the injections at week 2,6,8 to closer to 2 hours but will see. No real side effects still expect a bit of a dull headache.

Thanks Jan for letting me know about your treatment regimen experience. I might eventually decide to switch to the biosimilar and good to know about cross over studies. Will keep Imuran on the list to in case I develop antibodies against Remicade.

All the best,

Kevin

@KK1110 posted:

Thanks Lauren - the injector took about 3 hours and then they ask me to stay for another 2 hours just to be observed. Sounds like they will speed up the injections at week 2,6,8 to closer to 2 hours but will see. No real side effects still expect a bit of a dull headache.

Thanks Jan for letting me know about your treatment regimen experience. I might eventually decide to switch to the biosimilar and good to know about cross over studies. Will keep Imuran on the list to in case I develop antibodies against Remicade.

All the best,

Kevin

Your welcome hon, keep us updated

Kevin, once you develop antibodies against Remicade it is often too late to consider treatment for it. It just usually is not effective and you just have to move on to a different biologic. The antibodies will render Remicade ineffective. If the antibody titer is low you may have a chance.

Remicade and its biosimilars are a little different than other biologics. It is because it is a chimeric protein with mouse protein that antibodies are more of a problem. Other biologics for IBD are fully humanized.

Combining an immune suppressant like Imuran blocks the antibody formation and increases the time Remicade remains effective.

In regard to infusion time, they sped up my infusion time to two hours. Late last year they sped it up more, as new protocols were introduced. I now have a 30 minute infusion time, making about an hour total I am there. I have 20-30 minutes to wait after my premeds of Tylenol, antihistamine, and IV Solu-Medrol.

Jan

My infusion time runs anywhere from 2-2.5 hours, so it can often be 3 hours total time to and from the procedure which is around 10 minutes from my office.  I often bring work from the office to do, or answer work emails on my phone. But this can be a problem, because if the Remicade nurse sees that my arm is not straight, she will remind me to straighten out my arm or it will take longer.  I get 900 mg of Remicade, every 6 weeks, no antibodies in 5 plus years. If I am running late, the Remicade nurse has sped up the flow of the drip.  I never asked why they don't put me on a higher speed from the beginning. But they can adjust the speed of the drip if needed.

Dear CT and Jan,

Good to know about infusion times being able to come down which my doctor also mentioned. Also about the concern and possibility of developing antibodies against Remicade I'll keep on the radar.  So far I have noticed an improvement in my frequency / consistency even after just one infusion, so hopeful I'm on the right treatment path.

Another Question - do either of you experience headaches as a side effect (which is obviously listed in the package insert)? I seem to manage it ok with Tylenol and it's faded since my first infusion 10 days ago but just wondering.

Thanks,

I had a headache and flushing with my first infusion, but not in subsequent ones. No other side effects and my labs are always good.

I have developed mild kidney disease in the past 6 months, but it is not felt to be due to drug side effects. I am also diabetic and over 65, so those also is risk factors for kidney disease.

Jan

I have had no side effects of any kind in 5 years of taking Remicade except elevated liver chemistries around 2.5 years ago. They then took me off of Methotrexate (was taking 12.5 mg with the Remicade) and liver chemistries went straight back to normal. They remained normal until my test of 2/8/21 on which they were again elevated. A retest was ordered on 3/9/21 and I do not have results back but my GI didn't think it was the Remicade. He said if still high on the retest I will have a liver ultrasound. Fatty liver is suspected.

I have personally had no other side effects although in the Remicade room I did witness the adverse reactions of others which usually consisted of flushing and a feeling of warmth on one side of the body. I saw them stop infusions due to said reactions in other patients pre-Covid in the Remicade room. Now I get it in a private room.

Just got my March 9 blood labs back and my liver chemistries which were quite elevated on February 8 went right back to normal. My doctor asked me if I lost weight and I told him nope same weight so he had no explanation for the sudden return to normal.

My vitamin D went from 21 on February 8 to 34 on March 9, this from taking 5000 mg Vitamin D gel caps per day. My doctor was very pleased with the level and told me to keep it up.

Hi CT,

Good to hear about your blood results. I've also been taking Vitamin D for years which my doctors recommended. Also thanks to you and @Jan for sharing your experiences with Remicade and side effects.

I had my second infusion last Thursday and no side effects so far. Some positive signs are that I seem to have better control and consistency - which my Dr. seemed happy with too.  Plus I slept through the night for the first time in a year!

Also anything you avoid eating or drinking while on Remicade? Since I started my treatment I'm taking a break from any alcohol, been limiting my caffeine to one cappuccino in the morning and reducing my sugar intake (esp. at night) that seems to be helping too. Thanks,

@KK1110 posted:

Hi CT,

Good to hear about your blood results. I've also been taking Vitamin D for years which my doctors recommended. Also thanks to you and @Jan for sharing your experiences with Remicade and side effects.

I had my second infusion last Thursday and no side effects so far. Some positive signs are that I seem to have better control and consistency - which my Dr. seemed happy with too.  Plus I slept through the night for the first time in a year!

Also anything you avoid eating or drinking while on Remicade? Since I started my treatment I'm taking a break from any alcohol, been limiting my caffeine to one cappuccino in the morning and reducing my sugar intake (esp. at night) that seems to be helping too. Thanks,

Glad you are doing  better! I would clear alcohol ad caffeine out completely but hope you continue to get better

@KK1110 posted:

Also anything you avoid eating or drinking while on Remicade? Since I started my treatment I'm taking a break from any alcohol, been limiting my caffeine to one cappuccino in the morning and reducing my sugar intake (esp. at night) that seems to be helping too. Thanks,

I was not given any dietary restrictions on Remicade per se, but when I was taking Methotrexate with Remicade in order to suppress renal secretions of it, my GI doc put me on a 2 alcoholic drink per week limit. Are you taking Methotrexate? If you are taking Methotrexate then it, not the Remicade, would be the reason for limits in consuming alcohol, this due to the impact of Methotrexate on liver chemistries. I did eventually go off Methotrexate after 2-3 years and it occasionally elevated my liver chemistries. But the only reason for limiting alcohol is on the theory that your liver can only handle so much if you are taking around 12.5 mg Methotrexate. I do not believe the Remicade itself would be the source of any such restrictions. And some people have livers that can handle tons of drugs and alcohol, look at Keith Richards for example. Dude has a cast iron liver. He is a fellow CT resident and friends of mine see him at local bars and he drinks spirits straight I heard.

If you are not taking anything with Remicade as I am now, you are free to drink alcohol or caffeine with impunity. I only have coffee in the morning and I am only a social drinker and my average is probably less than a few drinks per week.

The liver chemistry elevation I had in February remains unexplained because I am not taking Methotrexate, but since it went back to normal on March 9, my doctor has no worries. The elevation seems to have been a one off and a mystery.

Hi Lauren and CT

Thanks again for sharing your perspectives. I'm only on Remicade after talking with my doctor and getting a 2nd opinion too. My Dr. didn't say anything about restrictions with alcohol but since a social drinker too, it's been pretty easy to stop and see if that helps too.

Love the Keith Richard's liver comment and agree! ... Robin William's did a good skit about him once if you haven't seen it.

I'll stay in touch as my treatment progress and wish you both good health too.

@KK1110 posted:

Hi Lauren and CT

Thanks again for sharing your perspectives. I'm only on Remicade after talking with my doctor and getting a 2nd opinion too. My Dr. didn't say anything about restrictions with alcohol but since a social drinker too, it's been pretty easy to stop and see if that helps too.

Love the Keith Richard's liver comment and agree! ... Robin William's did a good skit about him once if you haven't seen it.

I'll stay in touch as my treatment progress and wish you both good health too.

You are welcome! Hope everything gets better for you

Thank-you for offering to stay in touch, I love it when people do that

@KK1110 posted:

Love the Keith Richard's liver comment and agree! ... Robin William's did a good skit about him once if you haven't seen it.

I think this skit is that you are referring to (profanity warning to the PG-13 people on the board):

https://m.youtube.com/watch?v=mbHJ0KNYEoA

There is another connection of Keith Richards to this board and this discussion. Nicky Hopkins, a great studio pianist and keyboardist of the 1960s, was the keyboardist on some of The Rolling Stones greatest hits of the 1960s and 1970s. Richards and the other Stones wanted him to be a permanent member of the band, but because of Crohn's Disease he declined as he couldn't tour with them. Hopkins was prominently featured as a studio musician by many of the most famous groups in the world during the heyday of the 1960s, and elsewhere on this board I posted some of his best known work, including on "Beck's Bolero" which also featured Jeff Beck of the Yardbirds, Jimmy Page and John Paul Jones of Led Zeppelin and Keith Moon of The Who. Hopkins might have gone down as the greatest rock keyboardist in history and a permanent member of The Rolling Stones, if Remicade and the other biologics had existed when he was alive. Instead, he died of Crohn's Disease at age 50.

Here is Beck's Bolero, which features these 5 aforementioned superstar British rock musicians at their peak in 1967:

https://m.youtube.com/watch?v=nmO0OZC6Ifk

Had Hopkins become a permanent member of The Rolling Stones he also would have been the best looking guy in that group by a lot, and a likely very very popular member of the band. All of that got scuttled by Crohn's Disease.