running out of options

So it has been a while since I ventured in to post. I'm on month 9+ with this UP flare. Been on Humira since early June but there has been no change. None. I'm currently on weekly shots. We are now going through the process with insurance to see if they will cover Entyvio.

So quick recap - and please if you have suggestions please suggest away. I'm getting into the dark funk that comes with being basically stuck at home all.the.time.

March was colonoscopy. Started on 40 mg of Pred. Have bounced around between 20 and 10 and currently back at 20 per GI because of my latest sig (last week). Sig showed zero change from this one vs one in June, saw the pic's and its ugly angry raw. I've also been on Colocort enema in the evening for 3 months. zero change.
Uceris failed me. Humira failed me. Colocort failed me. Vsl doesn't seem to do anything.
GI said that if the Entyvio doesn't work we will discuss surgery.

I have also seen a dietician and started low fodmap not much help except I know now that anything with oats and HFCS is a NO (guess I did learn something though)

so - weekly humira
20 mg pred
50mg 6 mp (was at 100 but had bad bloodwork so went to 25 with allopurinol and then was bumped up to 50 after bloodwork was a little better but still all over the place per the GI)
50 mg of Nortriptylin at night
Bactrim 800-160 tab once a day (after last week's sig GI put me on this, previously had tried flagyl and it tore my gut up even more)
stopped colocort since I had no response to it.
still eating low fodmap

all this time/all these meds and still bleeding and urgencies. Average from 8-10 a day - some days more some days slightly less. Everyday is roulette.

I am sorry. Considering surgery is one of the most difficult things someone can possibly endure. On the other hand, since surgery, I barely ever think about any of the things people worry about with UC. My life is a breeze now. So much better. Really, my only regret was losing a large chunk of my 30s to illness and drugs. Hopefully you respond to entyvio, but if you don't, there could be a light at the end of the tunnel. It won't be easy, but it may be the best possible solution. It has been for me. Best of luck.

After you heal, and it's all said and done, you will wonder why you wasted so much time.

Data to date shows mesalamine enemas and supps are effective in many people, while steroid enemas and supps have weaker data to support their use.

The thinking that if Humira doesn't work, then Remicade won't work either makes sense - on the surface - but it's actually not always true. There are many reasons why Humira might not work: 1) You're a 'primary non-responder' to anti-TNFs, which means none of those meds will work for you 2) The medication in Humira isn't getting to where it needs to go in sufficient amount. Upping your injection frequency sometimes helps this, but sometimes a person doesn't get enough medication into their system, regardless of how often the inject 3) A build up of antibodies

There are studies ongoing right now that show that some patients who are failing Humira or Simponi succeed with Remicade. The injections of Humira and Simponi have different results than the infusion that is Remicade. The 'pharmacodynamics' are different. With Remicade being infused directly into the bloodstream, more of the medication is able to reach the bowel where it's needed. With Humira and Simponi being injected, in some people for reasons being studied right now, not enough of the medication is getting to the bowel where it is needed.

As just one example, my brother with UC failed Simponi but responded really well to Remicade.

A group of PhD pharm researchers and MDs are studying this to better understand why this sometimes happens.

So what your GI said seems reasonable, but actually isn't correct for a subset of patients.

Beave, I actually forgot your question about the labs, sorry. I actually have labs every 2 weeks. Did a specific lab for the Humira and everything was good - except my body's response. Your #1, being a primary non-responder, were the exact words he used during our discussion. Not sure what other supp or enema's could be added in if the steroids aren't doing anything - but then again, I'm still learning all this lingo and meds.

TT - I was actually the one that brought up diet to my GI, who then referred me to the dietician. I've been doing this for a little over a month. Since I'm not in remission and take meds and supplements I am not able to follow low fodmap the way it should be done but I seem to feel better all around without gluten and lactose.

You might take a look at the ibd-aid diet. It has stages that can help pinpoint problematic foods. Its similar to fodmaps--except for a lot of the veggies which seem opposite to each other ( what one allows the other prohibits).

I've never tried the rowasa enemas but so many posters say they are much more efficient than canasa. Wouldn't hurt to give them a try? Did you try uceris foam twice a day? I found that helpful.

Been on entyvio for 5 months and recent coloinoscopy showed no visual inflammation. Hope it gets the OK for you and works!

Oh my NSSG, You sure have been through a lot! Curious if you don't mind me asking, how long was your journey with all the meds before the surgery? Yea, I hear ya on feeling defeated. Sorry you have to go through all of that!
Flowersgal - that is awesome that Entyvio has put you in remission! I'm cautiously optimistic for the med. Well at I should say I'm trying to be. It's hard at this pointI I will talk to the GI about Rowasa. I think we talked about it a few months ago but my memory, seriously, is not the same it was before this flare. I will look into the diet you mentioned. At this point pretty much ready to go to any length to have some resemblance of my life back.
Ipoop - the IBD specialist, that I may visit again if the Entyvio doesn't work, had made a brief mention of FMT. I think that Doc thought one of his 7 idea's for action would have worked. Entyvio is #7. I have tried to get LDN and struck out with 4 Doctors. Frustrating. At least my GI put me on higher dose of Nortriptylin.

Family doctors (or general practitioners) are often much better for prescribing LDN. LDN is off label, not approved for UC, so no gastroenterologist-specialists will prescribe it. No guarantees, of course. There's a few success stories but it's poorly studied for UC.

FMT has its evangelists for UC and it could work, may not, as with everything UC it's a crapshoot. Some small studies are promising and there's more on going research on it.

I'd make a short list on what you want to try and how long you're willing to wait to get a quality of life back. There's a million things to try in the alternative arena and you don't want to get lost in the forest.

iPoop said...
I'd say low odds of Remicade working when Humira did not as they're very similar medications.

I'd pick one of the following and see if you respond: Entyvio, Stelara, or Xeljaz and then consider surgery if you fail it. You're sounding like a non-responder, but I'd definitely do another biologic with an entirely different mechanism of action (all of those I listed are different mechanisms) just in case one could be your solution. You only know by trying.

Are you still on 6-mp? Just a crazy option (haven’t heard 6-mp used with above biological non-anti-TNf biologicals) but I was able to continue only on 6-mp for a few years after I used Cyclosporine to get me out of a flare.

I’d rather stay on a medication and add some additional meds (cyclosporine) to it then discontinuing and starting a new med without any guarantee that the next med will work.

gozalot said...
Oh my NSSG, You sure have been through a lot! Curious if you don't mind me asking, how long was your journey with all the meds before the surgery?

I messed around with meds, supplements, diets and doctors for nearly 10 years! What a loss of time!