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Biologic failure question

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Ulcerative Colitis
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Posted 11/14/2014 4:55 AM (GMT 0)
Thank you for all of your responses to my prior questions. To recap, I have been on Remi for a little over a year and was in complete remission. The prior infusion cycle, I began experiencing symptoms at the 6 week mark and had to have an infusion a few days prior to regularly scheduled, hoping to move to every 6 weeks.

I am now experiencing a total relapse of symptoms (painful abdominal cramps with D, now blood, urgency) only 2.5 weeks since my last infusion. I have been on Uceris during this time but it does't seem to change anything. I don't think Remi is working for me anymore. Does anyone have any advice on how I should proceed or what options are left for me? Should I go with Simponi as I responded well with a prior anti-TNF, or perhaps try Entyvio? During my last flare, my pain and symptoms became too severe to wait several months for Aza/6MP to kick in and I was steroid refractory, so Remicade was the only thing that helped in such a short term situation. I am wondering if I'll need a colectomy in the near future and would appreciate any insight as I'm a bit scared.
Posted 11/14/2014 7:06 AM (GMT 0)
I had experienced similar symptoms and I was advised to undergone a surgery after 10 months of medication without progress. If medication provides not so effective results, surgery is really needed. Just prepare yourself and be ready, it's just a short procedure but it's the only way to treat your condition.
Posted 11/14/2014 1:00 PM (GMT 0)
For me, I failed anti tnf Humira after being on it for 7 years. It lost its efficacy. My gastro prescribed Entyvio as it has a
different mode of action. It is an integrin receptor antagonist.
He felt this was the best thing to offer me at this time.
I had 2 infusions already.
I would say definitely go the entyvio route. It has a slower mode of action than remi or even humira. But clinical trials showed very promising results. Exhaust all the medication options available Before going under the knife.
Posted 11/14/2014 3:13 PM (GMT 0)
same happened to me. then when to simponi for 8 months and it failed... now on entvyio for 9 wks and good progress
Posted 11/15/2014 2:38 AM (GMT 0)
Teddy - I am very sorry to hear about your issues.

I would like to take a step back. Are you sure you are with the right GI? I just cannot spend the (8 hours?) that a remicade treatment required. Nor would my GI expect it based on its efficacy vs. other treatment.s

There are other options you have before freaking out too much.

I know it is hard but I am with you. I do not plan on giving up parts of my body.
Posted 11/15/2014 3:58 AM (GMT 0)

Shanon Murphy said...
I had experienced similar symptoms and I was advised to undergone a surgery after 10 months of medication without progress. If medication provides not so effective results, surgery is really needed. Just prepare yourself and be ready, it's just a short procedure but it's the only way to treat your condition.


huh ?
Posted 11/15/2014 4:04 AM (GMT 0)
yup teddy, if you're like the cap, and want to keep your original plumbing intact, there are still lots of options out there -
Posted 11/15/2014 1:57 PM (GMT 0)
Teddy, understanding why the Remi failed is important in deciding next steps. If you build antibodies to it, another anti tnf might be worth a try. Testing for therapeutic levels right before your next infusion would be good, there is a chance you could go up to 10mgs per kilo at 6 weeks to get it to kick back in.
The next step for biologics is probably Entyvio. It takes a long time to settle the symptoms,so don't wait until you are too sick, esp since you aren't responsive to steroids.
You could try Tacrolimious, but even that isn't a long term solution. I am not sure about the multitude of options The poster above referenced. I'll assume at this stage of your illness you have tried diet adjustments.
A surgery consult helps to try your head wrapped around the possibility. Deciding where, who and when is way better than being thrown in under emergency circumstances. Best
Posted 11/15/2014 2:01 PM (GMT 0)
Captain Slow- Remicade infusions DO NOT take 8 hours. 2 hours, 3 max.

Teddy- sorry the Remi doesn't seem to be working anymore. I'm curious, did your symptoms return after starting Uceris?
Posted 11/15/2014 4:23 PM (GMT 0)
I had Remicade fail on me the only difference was I had no desire to entertain any other biologics as I was totally fed up at that point. Absolutely nothing wrong with trying another one if that's what you want to do. You may get the relief you are looking for. Where one fails another may work great.

My advice to you (from experience) is to at least find an excellent colorectal surgeon and go for a consult to gather information. This is so you are prepared just in case. It never hurts to arm yourself with knowledge. Good luck!
Posted 11/20/2014 8:29 PM (GMT 0)
Hello all,

Thank you so much for your thoughtful advice and encouragement. I have been in the hospital since Saturday (today is Day 6) and have been on IV steroids, which seem to have made me about 50% better, but I still have incredibly painful liquid BMs with some blood. I am able to eat very soft foods again but am not sure if eating exacerbates the BMs. I am unsure how much better I'll get on the steroids, but we are hoping I'll continue to improve to give the Entyvio (which is being ordered) a better chance to work.

I know some of you have mentioned that Entyvio takes a while to work. Do you think I could at least expect any partial relief whatsoever upon beginning it? It is quite painful right now and even a little less pain may give me the strength I need to keep pushing through induction.

I would love to talk to a surgeon soon in case the Entyvio takes too long to work or I do not respond. I hope I didn't make a mistake in not trying Humira instead, since I had responded to the Remicade so well.

Katmom, I believe I have built up antibodies to Remicade since it just stopped working only 2.5 weeks after my last expedited infusion. I was trying to make it to the antibody test before hospitalization to find out, but it is still a few weeks away before my actual next infusion would have been for us to conduct the test. (Therefore I am assuming it was antibodies?)

LiamsGram, I did indeed have a return of symptoms while we attempted Uceris. I think my UC was just too serious for it. But I have heard for others whom steroids seem to work Uceris seems to be a good short term option with less side effects. I just tend to be refractory to all but very high doses of steroids.

ByeByeUC, thank you for your insight. I would love to have had a chance to have a chat with a surgeon. I think I am still strong enough to do so but I wonder if anyone would be able to fit me into their schedule on such short notice. I hope that I can have this chat with a surgeon as I begin Entyvio. I am so scared but so grateful that people have replied!
Posted 11/21/2014 12:33 AM (GMT 0)
You could get a Prometheus labs anser ifx blood test done to see what the current remi levels are within your blood, and tezt for remi antibodies. Ifvthe remi levels are high and no antibodies are found then anti-tnf treatments have failed you. Entvyio seems to take a while to work, if you can wait...
Posted 11/21/2014 2:02 AM (GMT 0)

LiamsGram said...
Captain Slow- Remicade infusions DO NOT take 8 hours. 2 hours, 3 max.

Look at that. You learn something new everyday. My GI talked about Remi talking 8 hours and I read something similar in one or two places.

That being said after having home healthcare for my infusions I will never go into an office for an infusion. I finish in a much better mood from not having to have dealt with the BS in an office. This is nothing unique to an infusion but something endemic to the healthcare industry.
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