My options after failing Remicade.

My recent tests confirmed Remicade is no longer effective for me. My doctor has given me two options at this point. She said I could take an immunomodulator in combination with my Remicade since I did respond well to Remicade in the past. The other option is try Entyvio.

I'm leaning Entyvio, and if that doesn't work I'm probably going to just get the surgery. Might as well while I'm young.

I'm curious if any of you have an experience with either an immunomodulator with Remicade, or Entyvio.

I failed due to the medication not working any longer, at least not enough to provide relief. My symptoms are very very mild at the moment which is nice, but I have terrible side effects on prednisone. Once I'm on it for longer than two months (which is coming up) I begin to get bad depression and anxeity. I can already feel that coming on. I also have the usual weight gain, moon face, insomnia, night sweats, and mood swings.

Very happy to not be flaring badly, but at this point prednisone's side effects are almost as bad. As such, I want to start a new medication as soon as possible. I may risk stopping prednisone for some time to see how I do using Isatis Cooling alone. It's helped me taper all the way to 5 mg of prednisone without flaring terribly. Usually I can't go under 20mg.

Are you using any enemas or 5asas? I'd start there first before switching. I'd also ask about switching from Prednisone to Entocort because it is less systemic and has fewer side effects. You could also try Uceris.

Why didn't you try an immunomodulator before starting Remicade?

We have two basic medicine approaches with UC. First is to apply an anti-inflammatory compound like Lialda or Canasa. Second is to reduce the immune system's capabilities through immunomodulators like 6MP/Imuran and/or biologics like remicade/humira/entyvio. You've already taken remicade and immunomodulators like 6MP/Imuran have the same basic insert of potential side effects, very similar. These medications slightly weaken the immune system by knocking it down a couple pegs. However, we're not bubble boys/girls by anymeans haha.

I've been on 6MP and remicade for 3 years no and I'm not sick any more than my normal was. I'm just extra vigilant with hand washing and follow the same CDC recommendations that medical professionals do as most common flus and colds are transferred person-to-person through things like handshakes, touching door knobs, etc. You wash your hands good afterwards or apply a hand sanitizer. If someone is sick then you avoid or give them extra space (especially close-talkers).

And we do have posters who themselves are medical professionals and some who work with small children while on these meds and all do just fine. So you too would be fine.

I was on Remsima (an infliximab biosimilar, basically the same drug as Remicade) for about six months before surgery. I had been on azathioprine for a year before that, and carried on taking it while on Remsima. It wasn't getting me anything close to remission, and we decided to stop when it became clear I was just getting worse and worse. My consultant was willing to put me on Entyvio, but I chose surgery at that point. I was sick of the urgency and the constant feeling of systemic illness, and reached the point where I just wanted my life back.

My consultant did think that Entyvio is probably better for UCers than Remicade (which he thinks is more effective for Crohn's), but by that point I didn't want to give up more of my life trying out medications in the hope of one day finding remission. I met up with a j-poucher and someone with an ileostomy. Within a couple of minutes of meeting them, I knew I wanted surgery.

I am delighted with the result of my surgeries (j-pouch, no urgency, four BMs a day, the ability to hold on for hours, unbroken sleep, feeling healthy, normal diet and lifestyle, med-free) and wish I had done it sooner.

The only problem I still have as a result of being on Remsima + azathioprine is that I got some bad warts and verrucas while on them (which is very common). It has taken a long time to clear the warts off my hand. The verrucas on my foot are nasty and numerous. I get them frozen every two weeks, and will be for a long time to come.

I hope you're able to come to a decision you're happy with.

notsosicklygirl said...
I'd probably try simponi or humira, but move on to entyvio quickly if it didn't work. I'd also probably start the 6mp/imuran to prevent antibodies. One of those meds alone could potentially help.

Aren't those similar to Remicade? I thought if you failed to react to one type of Biologic, you will most likely fail the others as well. Hence why they want to try Entyvio. I'll ask my doctor about it though.

st_uc said...
I'm in the exact same situation. My 1st Remicade infusion worked like charm whereas symptoms became worse on 2nd and 3rd. The doctors checked for antibodies and they did not find any and are not recommending Entyvio. I have taking Remicade along with Imuran and Pentasa.

How did Remicade lose its effects so quickly within one infusion and not have any antibodies?

Sorry if I wasn't clear. Remicade worked for about 5 months for me. So around 6 or 7 infusions total, including the loading doses.

You don't need immunomodulators with entyvio. I couldn't take them because I'm a non metabolizer. The Dr had me on methotrexate for awhile because he said the experts thought they might help to some extent but then at a conference recently an expert ibd Dr that he really admires said that mtx had not proven to show it was much use in conjunction with entyvio. So I stopped taking it -- no adverse effects or increase in symptoms. So that was 1 less medication for me!

Remicade worked for me but I also had a flare while on it about 7 months in. By adding imuran and moving my dosing closer together after 3-4 months things evened out. I'd try it if the flare is bearable. I'm now at the 2 year mark and feel great.