Which biologic would you choose next?

As many of you know I have been flaring for about a year from mild to moderate. I was pushed up to double doses of remicade last October. I have a 10 cm patch of inflammation at my rectum/sigmoid juncture that will not heal.

My infusions moved from 8 weeks to 7 and now to 4. We just added 6 mp so I am doing one more infusion at 4 weeks and then hoping with a little more time the 6 mp we just added will kick in and I can make 6 week infusions again.

My period seems to be setting off flares. The last 2 months worse than ever. I am meeting with a gyn to discuss how we can skip my period the best way possible for my UC.

I am meeting with surgeons as this disease has pretty much broken me. My GI truly believes the 6 mp will stabilize things but after a year on this rollercoaster I am not as optimistic...at 25 mg or 50 mg.

I am getting a remicade antibodies/levels test before my next infusion as well as stool tests.

My GI is against surgery right now and wants to give this plan 3 months to work. My symptoms are worsening and I'm in a lot of pain and the frequency and blood are increasing...hopefully will calm down again after my infusion. If this plan fails he wants to try Entyvio. I am on the fence from trying another biologic or surgery. I have had this disease for 4 years and have flared for about 3 of them...mainly from my pregnancies. I was pregnant twice...flared during and after both.

So to my point...if you were to try another biologic which would it be? I'm not sold on Entyvio...or any of the others to be honest but I know if someone fails remicade there have been instances another was the magic bullet even though the odds are decreased on some of them...

And PS I will never ever go on oral prednisone again. I have been on/off steroid enemas for a year.

K that's crazy it grew back!! I didn't even think that could be possible. I'm meeting with my gyn to discuss the mini pill or endometrial ablation. I have to be honest I don't know much about a hysterectomy. I know they remove your uterus and ovaries correct? What does this do to your hormones?

I pray that we both have the turnarounds we need. And on the baby making front I would love to have one more. I have 2 but I don't think I could go through it all again. I was hospitalized after my first and during my second. Breaks my heart. But I have 2 amazing and healthy boys that make me keep fighting.

I might choose entyvio. If I was doing really badly maybe humira as it works faster in many patients. It seems like your disease has a lot to do with hormones periods and babies seem to set it off.

Why is your GI against surgery. I agree that you have many options and you don't have to do surgery now. But if you want to be done with UC, surgery usually makes for a much improved quality of life.

If you would be willing (I have ptsd and would not) you can do a pred taper or uceris to hold you over until the entyvio takes effect. It does have a different mechanism so even if you didn't have luck from anti-tnf you can get help.

I always wonder why simponi is pushed to the back burner. Is it less effective than remicade and humira? Or is it newer approved so less used. Does it cost more and insurance make dumb rules?

dr David Rubin and Russell Cohen from university of Chicago have a presentation and one of the things Cohen spoke about was the number of drugs they hebe in the pipeline. One of the issues they have is more drugs than people who are willing to be in clinical trials so it will take a while. But I heard there is another biologic getting approved for IBD (can't remember if both cd and UC or just one) by the end of this year.
So your GI does have an excellent point of waiting it out, but if you feel like you want surgery i dint think it is a bad idea. Your choice.

Husband tried Humira after Remicade but it did nothing. Doctor did not think simponi would work -- I think all those biologics are in a similar family. Entyvio is the next logical choice probably, since it is approved by FDA and has worked for many people although it can take awhile.

We were very fortunate to have our insurance cover Xeljanz. It is in clinical trials for UC but approved only for rheumatoid arthritis. Started in March and now definitely in remission. And it is pills. So far no side effects but who knows over the long run.

Stelara trials for UC are underway so you could explore that as well. My understanding is that they can tell pretty early on whether it is working, so if you were first given the placebo, they will move you to the medication relatively soon.

Dikid said...
One of the issues they have is more drugs than people who are willing to be in clinical trials so it will take a while.

You what?

I would jump at the chance to join a clinical trial!! Why wouldn't anyone who hasn't responded to the usual meds not want to try a novel treatment which might work? Unfortunately no clinical trial would have me 'cos I always fail on something or other - having a colectomy is usually grounds for exclusion for a start.

I think I would try simponi or humira, I'd rather give those options every possible chance bfeore moving on. I mean, there aren't that many options beyond anti-TNF, it's just Entyvio and the success rate is under 50% and rate of continued remission at a year is even lower i think. If TNF blockers have any hope of working i'd try to stay the course with a different one, if that fails, i would go to Entyvio. Entyvio works slower and it sounds like you're feeling pretty lousy. THat's just me though I can see opting for entyvio right now...

I agree with trying at least one more anti-TNF before moving onto Entyvio. The stats aren't great, but try to ignore those: there are stories of people failing one anti-TNF but doing well on another.

6MP takes 8-12 weeks to start working. 25mg is also a very low dose, probably too low to be therapeutic - try to go up to 50mg if you can. Even 75mg if you can metabolise it (there is a test to check for this called the TPMT test).

I agree that you need to give 6mp time, also, 25mg is very low... you should get the test to see whether you're in the therapeutic range - which i am not sure anyone is on 25mg. I also want you to be realistic about the increased chance for infections. I got a horrible blood infection when I was on double dose of remicade while taking an immune suppressant. It's not worth it to go through what I did... please be aware that these drugs are very serious and that the immune system is only so capable of fighting things off. At a certain point, it's not worth getting septic shock over treating this illness. It's not in my opinion anyway, perhaps some people think it's better than the alternative. Those people probably never had shock or surgery...

Nssg I feel the exact same way. Being on a double dose of remicade and 6 mp scares the heck out of me. That's why I'm taking the time on 25 to see if it will work. I did get the tmpt test when first diagnosed so I am capable of metabolizing. I'm getting my 2 week blood work this week. I see my GI next week and will discuss the test to find out when is the right time to test if I'm in the therapeutic range. I feel like a lot of questions will be answered in the next 2 weeks. I'm getting stool tests and also remicade antibodies and levels this week. So I'm hopefully covering my bases to keep myself safe.

Again to me this is insane for 4 inches of inflammation. Granted who knows if it's spread in the last 5 weeks because my symptoms have definitely geared up.

notsosicklygirl said...
I think I would try simponi or humira, I'd rather give those options every possible chance bfeore moving on. I mean, there aren't that many options beyond anti-TNF, it's just Entyvio and the success rate is under 50% and rate of continued remission at a year is even lower i think. If TNF blockers have any hope of working i'd try to stay the course with a different one, if that fails, i would go to Entyvio. Entyvio works slower and it sounds like you're feeling pretty lousy. THat's just me though I can see opting for entyvio right now...

one of the the reasons why success rates are so low for enytvio is that it is often tried later on in the game called IBD
it is shown that the later meds are used, the less of a chance htey have of working, this is why docs are started to push for biologics earlier rather than waiting until things get so bad
entyvio is often used after a couple anti-tnf becuase of insurance/or becuase its newer and people have already tried other drugs


but the anti-tnf do often work quicker so....

All this biologic talk, makes me wonder if I should have picked Remicade over the Humira. It was quite remarkable how quickly the psoriasis and joint pain I had disappeared but a lot slower for my UC. I hope I'm just being impatient, I'm slowly improving but I seem to flatline a week after my dose and then improve a little more after the next injection. The ups and downs are starting to get to me.

@Totesmagotes, I won't do pred either and now being menopausal, I wonder if my hormones being out of whack is impeding my progress. I perpetually feel premenstrual. Are my cramps from that? My UC? Anyhoo, at least with Humira, it's quick and you do it at home, no being hooked up to an IV. This is definitely a roller coaster, not a fun one.

@notsosicklygirl I've been reading up on non responders to biologics and it's a bit worrisome to me. in some Humira drug study I was reading, people with pancolitus do not have the best chance of going in remission. Is that the case for all biologics? I don't know, someone around here probably knows way more than I do. I appreciate your candid posting about everything you've been through, it makes me way less scared. I'm not going to be surprised when the day comes, when the doc says "stick a fork in it, your colon is done." I'm going to keep on with the Humira but I dunno, some days I feel like I'm jus reshuffling the deck chairs on the Titanic.

Sorry for rambling on a not mine thread. 😳

@Dikid, that makes me feel more encouraged, I was reading a drug trial study for Humira and it seemed those of us with Pancolitus were in the low percentage of responders for remission. I see my GI doc in a couple of weeks, so I'll find out about dosage increase.