Remicade - At what point do you quit?

That's a tough one. Certainly risky to rock the boat, but also awful to have a limited quality of life with lingering symptoms.

A few different options:

Continue taking remicade and add a thiopurine (azathiopurine, imuran or 6-mercaptopurine) and add back a mesalamine. The cumulative affect of multiple meds can give a remission.

Consider switching to stelara or xeljanz. I know stelara can be combined with methotrexate, an option. Stelara and xeljanz are different mechanisms of action than remicade, and are fast acting meds (6 weeks or less for an initial response).

Entyvio is pretty slow acting sometimes taking 12 weeks or more to work.

Have you tried methotrexate? It's typically a Crohn's med but can be tried for UC patients who have a history of adverse reactions to 6MP.

Xeljanz and stelara are both fairly new for UC, so there isn't yet a large history of how people respond to them (compared to say older remicade). We've had posters have success with both, and I've read of some on other forums/sites too. It's just so much trial-and-error in treating us, that nothing is a solid guarantee, more realistically a try and see. At least stelara/xeljanz are 6 weeks or less for an initial response, so you can find out pretty fast whether one or both (tried independently) are going to work for you.

It's tough to say why your response isn't sustained. It's certainly a minority of cases (25 percent or less). Maybe you have a particularly aggressive and medicine-resistent case. If that's ultimately you then the a colorectal surgery would be the resolution for you. It's too early to say, but at least something to have simmering on the back burner, just in case it becomes a necessity someday. As the mental hurdle is always the hardest to jump. We have posters here who underwent it, are loving their quality of life without UC, no flares, no doctors, and no meds. I'm at peace with it, if it ever comes to that for myself.

UC girl, try adding a high quality probiotic and diet (you can check out plant based diets or SCD) while you are waiting anyhow for something to work. For some people they work really well combined with meds and have research support. I would also do a surgery consult to have options.

I posted a study done in Japan on Remicade + plant based diet and remission rates were very high at almost 80% (no control group though). I don't follow a plant based diet since i'm on SCD, but you can read about it anywhere online. Even if it doesn't work for UC, it will boost your immune system and ward off metabolic illness.

Post Edited (Jane974) : 1/6/2021 12:41:42 PM (GMT-7)

UC girl, what does your colonoscopy show in terms of inflammation?

Remission for most UCers is 1-2 BM's per day, formed stool, no blood and no abdominal pain overall. You should feel pretty good in remission and UC shouldn't be a big part of your life at all. I don't think you are over-reacting--4-5 loose stools, cramping pain and some blood sounds like a flare and would be considered a moderate flare. A lot of people on this forum have needed more than 1 biologic to get into remission and require combination therapy.

The probiotic that has the most research on it is visbiome (previously VSL3). Some people do really well on it and some don't see any improvement. I have it covered by insurance so I pay nothing right now for it I also recently started making homemade kefir and see results from it. Homemade kefir has up to 50 probiotics and yeasts as opposed to yogurt (only 5-6 strains). On its own, it's not going to be enough, but it can help when combined with meds.

Post Edited (Jane974) : 1/6/2021 10:10:30 PM (GMT-7)

Ps. I wouldn't go down the MTX route. The reason it isn't used much for UC is because it's not very effective. It's also a more potent immunosuppressant than the other drugs available to you.
Also, in remission I can eat pretty much anything I like (although I avoid junk food and gluten as I don't think they help uc). It's a big mental relief to have that freedom.

And that's why I say the mental hurdle is the hardest to jump. Often fear means a misunderstanding of something.

Can you horseback ride and be physically active with a temporary ostomy or a completed j-pouch? Yes, absolutely. You can swim, run, ride, dance and do pretty much anything you want with it. It's also a lot easier to enjoy those activities without the bowel pains or urgency. There's professional athletes, weight lifters, runners, and those who play sports with them.

Are you over-reacting? 4-5 bms a day with cramping pain is flaring and not okay when inflammation is present. Lingering inflammation can spread in extent and severity and increases your odds for colorectal cancer over the long term. It's also a big quality of life hit. But like the frog slowly boiled in a pot of water, we're not fully aware of the compromised lifestyle, things we're missing out on, and excuses we use.

Surgery worked for me. I run,exercise often. I'm a contractor who loves the physical part of the job(incisional hernia I have gotten bc I'm not careful enough). Surgery saved my life. UC was getting to a dangerous uncontrollable point. I'm free now. No more worries. No more anxiety. Great surgeon. Great hospital(NY Presbyterian). Be careful. Be safe

You are all so kind and supportive! It means a lot.

I do think after being sick for so long, I have forgotten what normal feels like. I haven’t had a scope in over a year, but the plan is for this spring. When I was last scoped it did show active inflammation and ulcers.

My last blood work was actually pretty good. Everything was normal except for the CRP being 16 with the limits 0-10. This year usually it has been in the 30-50 range. Sed rate is also typically is the 50 range With the limit being 32.

Liver enzymes were sky high this summer on mercaptopurine, but have since returned to normal after stopping.


Currently I have gone 7 weeks from my last infusion, as I got a new job and switched insurances. The new policy has yet to approve the Remicade and is denying it based on the high dosage. 10mg/kg every 4 weeks is too much according to them. My doctor is trying to appeal.
That is another reason for considering switching, if my insurance refuses to approve the higher dose, then Remicade is no help for me.


It is nice to hear some positive stories about the surgery options! I guess the idea of such an invasive process is very scary. I’m sure the healing process is hard to. I do want to try the other options, such as Xeljanz, Stelara, Entyvio etc before considering that. But it is nice to know it’s not the end all, be all.

It’s so frustrating this disease won’t cooperate! Dozens of different medications and I don’t feel as though I’ve ever had relief, except for a brief 6 month period, in over 10 years.
At least I’m not alone 💕

Has anyone here had any success with trying LDN? I convinced my GI to let me try it in the meantime while we are fighting with my new insurance company to get my remicade approved. It’s been 7 weeks since last infusion.
I’m currently on Uceris as well, but only have 7 pills left... new insurance won’t cover it and it’s $5000 out of pocket.. so won’t be getting another script soon. Prednisone does nothing to ease my symptoms anymore.


Does anyone else think it’s worth a shot to try? Should I be concerned of any side effects? Pharmacist told me there’s not much to worry about except a little insomnia.

I just started LDN. It takes 2 months to work from what I read. No side effects at all--very safe compared to UC meds. I get side effects from uc meds and almost all other meds, but amazingly nothing from LDN. The only thing I noticed was improved energy levels, but not in a jittery way that affects sleep. No effect on UC yet, but it's only been a week. It's worth trying given safety profile while you are stuck waiting for the insurance to approve. You are supposed to start on 1.5, then up to 3, then 4.5mg (therapeutic dose). I'm not on the full dose yet. I'm praying that this will work for me and I don't have to go on anything strong.

Post Edited (Jane974) : 1/7/2021 8:08:45 PM (GMT-7)

UC_girl said...
I appreciate all the replies!

I have not tried methotrexate yet but I will mention it to my GI.
I’m open to the idea of trying the other drugs, I just wasn’t sure if it was worth stopping something that “somewhat” works.

This may sound weird, but I also don’t know if I’m “overreacting”. As in, maybe I should be okay with 4-5 loose BMs and cramping a day? I will say thankfully I don’t see much blood, if any, unless I go without Remicade for 7 weeks or more. Perhaps I’m doing better than I think and I just need to be okay with it? I don’t know if I have a high pain tolerance, but I presume I do to an extent as I’ve been sick for 10 years with no real remission stage.


The idea of surgery utterly terrifies me. I can’t even fathom the thought. I’m very active (when I’m able to be) , and ride horses and I feel like that might hinder those activities.


Also I am on a good probiotic, as well as a digestive enzyme. Unfortunately I did have to pause it , as it seem like it made my symptoms a little worse recently. It’s so hard to tell what’s triggering the flare anymore!


Again, I appreciate all the help and advice.

Hi! Long story Short I exhausted all the meds and I had to have J pouch surgery. This was 10 years ago. Remicade was pretty much my last shot and I failed that. I know surgery is terrifying. Believe me, nobody was more scared than I was but I really didn’t have much of a choice at that point.
I am commenting because I noticed you said you do horse riding. I do as well! And if it wasn’t for having the surgery I wouldn’t be able to do things that I enjoy doing today. Just try to keep an open mind when it comes to your options...that’s really all I wanted to say. Best of luck to you!

Also - my doctor prescribed 4.5 mg of LDN and just stated to start taking 1 a day. There was no mention of a loading dose? Even the pharmacist didn’t mention that? Do you know if it’s harmful to start at the full dosage? I will call tomorrow and confirm as well... interesting to see.

From the research i've done, you start at 1 pill and if tolerated increase it every week till you get to full dose of 3 pills per day (4.5mg). Go slower if you get any side effects. LDN is one of the only meds i've tried without side effects. Good luck! It would be pretty amazing if LDN worked for me, as it's only been 10 days or so.