Going off Remicade

I don't know if this counts....

My urologist and nephrologist wanted me to come off Remicade. (Because if antibiotic resistant Recurrent UTIs) We had slowly stretched out my time periods to 8 weeks and lowered the dosage at 5kg when we decided to try to stop it. I felt pretty good. We were hoping perhaps I would not relapse severely. At the 12 week mark I had developed some pretty severe symptoms. They checked my trough levels. Remicade was not detected and antibodies were very high. I have a colostomy. I can see my stoma--- and the size of my intestines. It more than doubled in size during that time period, it turned purple, it oozed mucus, had spasms throughout, my abdomen was distended, I was having a difficult time passing anything, I started to become nauseated, my fistula swelled back up and drainage from it increased. I developed another abscess. My extra intestinal symptoms aggressively started back up also... psoriasis, eczema, inflammation arthritis, and uveititis. A sigmoidoscopy showed worsening disease. At week 15 we started methotrexate, and scheduled a Remicade infusion for week 16.

I had a very slight reaction to the next infusion of Remicade. We doubled the dosage of methotrexate, pretreated prior to my next infusion of a double dose of Remicade. It's taken a pretty long time and I am just now coming out
the "flare". I am at 10kg every 6 weeks now. Because of antibiotic resistant recurrent UTIs we did not put me on Prednisone. I was extremely fortunate in that methotrexate quickly drove down the antibodies and my Remicade level increased. My team of doctors said that usually does not happen. I still get pretreated and we all still hold our breathes when I get my infusions. I will have a scope at the beginning of next year.

Frankly, for me, it was a freaking nightmare..but I was diagnosed with severe aggressive UC/Crohn's from the beginning. I struggle even when I am sorta "well". Remicade was the only drug that worked for me.... I had allergic reactions to everything else I had tried. I had been on Remicade for approximately 6 years when we tried it. It was worth the experiment. Now I know. Others stories may be vastly different.

If you decide to go off please make contingency plans. I planned with my PCP, GI, Colorectal surgeon, infectious disease doctor, urologist, nephrologist, and my urogynecologist. I like to hope for the best and plan for the worst.... Unfortunately I was not able to go off Remicade. Fortunately I had several "plans" and a team of doctors watching over me closely.

P. S. I've now been on Remicade for 7 and a half years. Aaaaand... The GI and CRS were having a very difficult time agreeing to trying to stop Remicade. It took several meetings and lots of negotiating.... And I had a medical reason why I needed to not use immune suppression.... If you're healthy and there's not a sound medical reason you probably won't get the type of support I received.

Clo

Post Edited (clo2014) : 11/13/2022 9:10:49 PM (GMT-8)

I have no experience but wanted to say Rusty Barr does. If he doesn’t come here to post you might read thru his thread “increasing inflectra dose”. Its a long thread but I believe he talks about going off remicade because he was in remission. It didn’t work out well for him.

Why'd you start Remicade to begin with if you claim it was FMT that put you in remission? I don't understand.

@Sara, it's of course a long story but here's the summary of my timeline.

Started what would turn into a very big flare about November, got worse and worse and worse until I was hospitalized in January (back then I didn't realize what "getting worse" meant as I had been healthy my whole life...young and dumb!)

In January, they put me on a high dose/high frequency of Remicade, which definitely alleviated some symptoms and I was able to go home from the hospital. At that point and for the next several months I lived in my bedroom, couldn't walk more than 20 steps, lost about 25% of my body weight. It was obviously a very dangerous situation, and I was at the point where they couldn't do surgery on me because of my weight loss...story for another time.

I was still on Remicade through all this. I had a colonoscopy in early September that showed my whole colon was inflamed (no surprise). Then in late September I did I believe 7 fecal transplants from a sibling in 7 days, pretty much a last resort. On day 7 all of the sudden I had significant improvement of my UC symptoms (less frequency/running to the bathroom, more energy, no more puking, less blood) and another colonoscopy I did about a week or two after that showed the inflammation in just the tail end of my colon, so to speak, har har.

So, it was either an extreme coincidence that after 9/10 months of Remicade my body just all of the sudden HAPPENED to heal at the exact same time I did a week of FMTs, or it was the FMTs. I don't really "claim" that that's what happened...it did happen haha.

I assume that Remicade has helped me stay in remission all these years, but I don't attribute it to putting me in remission. Pretty much no professionals believe that it was the fecal transplants because they're all pro-medicine, but the timeline just doesn't add up for me.

Anyway, that's the answer *shrug*. Was obviously a very tough year for me and would prefer to not go through that ahead. Hence this thread and seeking answers

Hi. Yeah. No need for me to recap my story here …it’s in the open thread.

But, from my experience, I highly recommend you stay on some sort of maintenance drug. Do not try and maintain remission through just diet and exercise. That’s a recipe that will lead to trouble in my opinion. I wish you the best.

CC: Thanks, yes, I use the copay assistance. It only helps with the cost of the actual drug, not with administering fees, "supplies," nurse fees (which are somehow different than administration), etc. My new insurance within the past 18 months doesn't cover much of any of that and neither does the assistance. SIGH.

Doop: Yep. I question whether it's doing much at all. Another reason I'm thinking of going off. There was actually a time I went down to half does at 12 weeks for about a year and....nothing happened. Like I mentioned above, there are so many considerations and unknowns (including how much next month's infusion will cost haha....does insurance know? nope! Does my clinic know? Of course not!)

To answer your question, I have been tested for both trough levels and antibodies. Enough, and none. So again, I assume it's doing something, I just don't know for certain. I have indeed tried many different GIs, all of which have said and done the same things and to be honest, I'm not sure I have the bandwidth right now to go on another hunt for a new doctor. I appreciate your validating reply, truly.

I have so much I could say but just, wow... They kept you on Remicade for a year while it did nothing and you were housebound?! I would have quit that long ago. I think doctors often keep us on these meds too long when they cleary aren't doing anything. Is prednisone not an option for you in the future if you ever become that ill again?

The OP said they had been on Remi for 9 years and currently have no symptoms. 9 years ago were there even any other biologics approved for UC? That may be why the docs didn't try a different drug -- there wasn't anything else at that time. (just guessing)

Hill Hunter -- my remicade infusions are billed altogether and because of the med it maxes out my out of pocket. If they bill your med separately I can see why this is getting costly for you. Definitely look for better insurance.
Have you had any other scopes in the last 9 years? It's a huge roll of the dice to stop your UC med. Even if you don't think that's what put you into remission, it may be what is keeping you in remission. All the meds for UC are expensive.

I thought that was a timeline of 9 years ago when Remicade was 1st started, but I can also see why it sounds like it was more recent too. Hopefully the OP will stop by and clarify

Oh, and Susie to answer your question more directly: CC was correct. I'm in remission. No signs of colitis. Took that blood test for inflammation (CRP test maybe?) and it was basically level zero. I have a colonoscopy coming up in a month which will hopefully confirm that inflammation is minimal. I had a more minor flare a couple years ago which I attribute to the stress of the pandemic/losing my job/going through a breakup. That lasted maybe 6 months and was truly what I'd consider minor. I still did my daily activities as normal, just with slightly more annoying BMs. That cleared up two years ago.

I have no solutions or advice — just wanted to commiserate. Sorry about the misinformation with Rusty’s story — thought I remembered he had been on remicade but stopped it. But I do think his story about stopping humira while in remission has merit because he did end up relapsing and now is having a tough time getting back to remission.

This disease is just awful all the way around. If we are lucky enough to find remission the monetary costs can be overwhelming and the fear or ending back in a housebound situation never truly leaves.

I wish there was an easy answer for you. Personally my opinion is that going off meds will eventually lead to a flare and resumption of symptoms. But there are a lot of new options for UC drugs out there.

Maybe humira (self injectable) or a pill like xeljanz or some of the really new ones would work out better cost wise (with hopefully copay assistance) and no infusion admin fees. But they are still really expensive and unfortunately there’s no guarantees which would work for you. And you would probably have to be flaring to switch (don’t know that for sure, only that insurance companies rule the roost and good guess as to what they would say) And we all know the pain of being in a flare and waiting to see if a med actually works or is a bust.

Sorry you’re going through all this! Oh, and I think someone just posted a week or so ago about home fmt— had done it years ago and it worked, but was flaring again now. Sorry I don’t remember the details but I think the post was titled Home FMT.

Hi all,

I wanted to post an update on this thread from November. I am still doing my infusions, and have kind of figured out a way to scrape by with my medical costs (maybe I'm just feeling optimistic today because I'm getting several hundred back from my taxes).

I made the decision to continue with my infusions even though I was having/am having such a hard time affording them. Made the decision because obviously I don't want to flare again. My clinic was telling my that I wasn't allowed to get my infusions if I didn't pay in full at the time of appointment, which I think is pretty cruel seeing as I've never not paid a bill with them and they've received tens of thousands of dollars off my illness in the past ten years, but I digress. Basically, payment plans were not an option so here are some things I did to reduce the costs at least enough to not have to go off of them. If anyone else is struggling, maybe some of these will help you too.

First, I switched clinics, which I believe cut the OOP cost about in half because of their contacts with my insurance company...insured through my employer...as a reminder, I'm in the US, hence the "issues" with cost of care

Second, I reduced my infusions from 8 weeks to every 10 weeks. This isn't doing a ton obviously, but it's making it so I get one more paycheck in between each infusion. Shrug. It hasn't affected my symptoms because (as you can read above) I'm not even sure Infliximab is doing anything for me.

Third, my employer decided that the company would not be giving out annual raises this year due to some malarkey about sales and not being able to afford it. In my desperation I told them that I was drowning in medical bills and could they fund an HSA for me to get through the next few months. I haven't received this yet but it's looking promising for once my FSA runs out (sigh). I also asked our HR team to give us better health insurance plan options mid-year when open enrollment takes affect. This started a whole thing at my company that is still going on, so I feel like an instigator but at least valid in my instigation!

So that's where I'm at. Next up I am about 2 years overdue for a colonoscopy and that'll be about $1,200 OOP. Maybe that's where my tax refund will go hahaha.

By the way, if anyone here hasn't itemized their medical costs and added that into their tax deductions, I highly recommend it. I just needed to get above $5k which was extremely easy to do, and that gets me above the standard deduction each year. Such a funny thing, "tax season"