Would you try Humira or Entyvio and stop Remicade in these circumstances?

Most of you know my story. I have been on remicade since 2/5/15. Went right into remission after 3rd dose. Stayed in remission for 4 months. Had second baby 3/28/15. Uti abx knocked me into a flare that lasted 2 years. Got it under control by adding 6mp...finally.

Just had iud removed and started mini pill...pushed me back into a flare. I have about 2 inches of mild inflammation in rectum/sigmoid. Same spot as before just smaller this time.

Remicade does well for me. It keeps things under control...meaning the inflammation doesn't spread...but getting it gone is awful. My flares are long. I've only had 2. One lasted 1 1/2 years (diagnosis) and the last one lasted 2 years.

I'm on a steroid taper. Pred does NOTHING for me. My question to myself is...is remicade working? The fact that I keep flaring makes me think no. But stopping remicade and not being able to start again if another biologic doesn't work scares me. We are going to increase my dose as a last result even though I am in a therapeutic range at the standard dose and sky high concentration at a double dose...but maybe my body needs that?? I don't want to biologic jump and I'm seriously considering surgery. The physical aspects of this disease are awful but the mental aspect crushes me. I want my life back. I want to spend time with my kids. I want this huge weight of OMG when is it going to happen again gone.

If my flares lasted a couple months with long stretches of remission I would feel different I think but it's never ending. I still haven't recovered mentally or physically from the last flare.

So my questions...

1. Do you think remicade is not working for me?
2. Would you try humira or entyvio? Since I respond semi well to remi would I respond well to humira??
3. Would you just skip it all and go for surgery??

Thanks Kk. I'm just so drained and tired of all this.

Yeah my gi feels the same about remicade. And you read my mind. Give myself 2 more infusions. Bump up to 7.5 and if that doesn't work then 10. I go every 6 weeks.

Then decide to try another biologic or surgery. I'm not really sure how I feel about entyvio.

I'm going to move forward with surgery stuff simultaneously. Want to get testing done to rule out crohns etc now so I can just pull the trigger. Meeting with surgeon again in April. Will have another remicade dose before seeing her. Then my may infusion a day before my 10 year anniversary vacation with my husband. Was supposed to be my first vacation flare free in 3 years. 😭

Curious if anyone on here went from remicade to another biologic successfully. I'm sure they have but I heard the rates drop quite a bit on the success.

Thanks nssg. That's what runs thru my mind too. How long will this remission last til I'm right back here again??

I thought once I got passed the baby stuff and my hormones settled out I would find a stable remission. Not the case at all.

I sent you an email to the address from this site.

I tried remicaid in 2013 (I resisted but after a 2nd opinion from Cedars Sinai I gave in) during a mild/moderate flare and it helped at first but then symptoms returned and the only thing to quell it was nightly rowasa enemas. I was trying to conceive and since the remicaid was mediocre at best I stopped after my 3rd infusion.

Pregnancy put me if full remisdion in 2014 and I had a baby in 2015, and was fine for awhile. But took a lot of antibiotics and ate like crap and had A LOT of stress in 2016, and a lot of inflammation everywhere else in my body (rosacea, constant mouth sores, fatigue) which culminated in the worst flare ever beginning around Christmas.

60mg prednisone barely got me by until I started Humira. The Humira took a month to work but now I am healing quickly and having an easy time taperng off the prednisone (so far). I feel much better now than I did in the past year!

I want to put off surgery because I have a 2 year old and want another baby (I'm 37 so biological clock is ticking). I would want to travel to another state for the best surgeons and where I live now I have no family. So multiple surgeries (for j-pouch) would be a logistical nightmare at this time. I do anticipate that I will eventually have the surgery, but I hope to do it on my terms.

I tried Remicaid, it was mediocre, but then Humira has worked wonders. So it might for you too. But if surgery is a logical option for you and you are ready then maybe just get it over with--I've fantasized about it for years!

Plucky- your story is very interesting. I'm stuck on wanting a third baby and always wonder if I get pregnant will it put me in full remission. I will be 37 in November so times not on my side either. I'm always great the first 2 trimesters. I flare in the third or at least with my first 2 and my worst case nightmare would be needing the surgeries with a newborn at home. I'm so glad to hear humira works for you. This is such a huge decision and I feel like with meds I'm just buying time until the inevitable. I unfortunately don't have long remissions. Sigh. Or not yet....

Thanks Casey and iPoop- John I'm assuming you're suggesting entyvio for same reason as Casey?

Hey bull!

The flex 2/22 showed no inflammation. Very healthy colon. He managed to get scope into descending.

Had iud pulled 2/17 bc I landed in er. Started progesterone only pill 2/19. Started causing issues.

The flex 3/15 showed 2 in patch at rectum/sigmoid (same spot I fought for 2 years but smaller and much more mild).

Im just baffled. Is it hormone related? Is it bc I dropped remi dose (my concentration level was insanely high at 30 on double dose).

I would think/hope/pray the remicade and 6mp would keep me stable. Right?? And it's such small areas of inflammation. This time only 2 inches!!!!! Why?????? They wreak havoc because of location. And mentally kill me.

Bull that would be awesome. I'm on a short pred taper and started cort enemas last night. Next remicade dose is 4/7. Trying to figure out if we should increase it. Hopefully that all snuffs it out.

But only time will tell. I'm trying to cover all my bases with meds including the option of surgery.

I just got into remission after a 2 year flare. I'm exhausted.