Remicade Failing after 3 months?

So I've gone through a ton of meds, including humira and most of the 5ASA's due to ineffectiveness/unresponsiveness. My first remicade infusion was 3/25 and the results were remarkable (i was on 60mg prednisone at the time that on it's own didn't seem to work). Noticed a difference in a day and in a few days I was almost back to normal. I got my last infusion July 2nd (by that time i was finally off prednisone a few weeks), and really have been struggling the last few weeks. Other than the remicade, I take a mix of vsl#3ds and psyllium seed powder nightly.

I called the GI as it's getting worse (more BM's a day, blood, urgency, inflammation etc). He's finally letting me try uceris and I really want to avoid prednisone. Today was day one and i know it's way too early to tell and I will have to give it a bit.

It's heartbreaking because I finally thought we we onto something with remicade but now I'm worried it's not viable. I'm worried because I've really exhausted most of the drug options, i don't know where we go from here...

Post Edited (jac91584) : 7/30/2013 6:08:15 PM (GMT-6)

garylouisville said...
Are you sure the psyllium seed powder is actually helping you? It may possibly be making you worse.

it's something i've been taking since before the days of remicade, so i didn't really give it much thought. should i consider going off it until some of the symptoms subside?

ScienceGirl said...
I noticed you hadn't been on the forums, and I assumed it was because you were in remission! I'm so sorry you're doing worse again.

Remicade was helping for me, but even increasing the dosage (10mg/kg) and frequency (6 weeks) didn't work well enough. I asked for hydrocortisone enemas, and one month of those put me in symptomatic remission. They started working right away. I highly recommend trying that.

I agree with gary, some supplements have made me worse (like slippery elm bark).

yeah I definitely disappeared, combination of reasons. definitely was doing better health wise but I also was wrapping up my MBA and was crazy consumed with it all. i took a full month off to completely destress after school and I really felt pretty good, best i've felt since getting diagnosed (but it wasn't never perfect, i'd have issues from time to time but isolated)

i've done the enema's before and maybe i wasn't on them long enough, but they didn't do much good. slippery elm made me worse as well, i discontinued that after a week of trying it.

it's weird, 60mg of prednisone on it's own did nothing this time around but the remicade + prednisone may have been the key. maybe i can attain the same remission with remicade + uceris, i can only hope because I really feel like I am running out of options.

garylouisville said...
I guess I have to stick with my original question, are you sure it is helping at all? If you felt it was working before the Remicade then I would stick with it now but if you aren't really sure and continue to take it anyway, I would stop for a while and see what happens.

i'm going to go off the psyllium tonight and just stick to the vsl#3 that i mix with gatorade. today was one of the worst days in recent memory, i'm hoping to see some small incremental improvements from uceris. really don't want to go back on prednisone

i was also wondering if it's possible i got a bad batch of remicade, i mean i doubt it but the latest infusion really did nothing... the other infusions were definitely helpful... it's puzzling.

well 24 hours after my first uceris pill and bleeding has subsided. while the other symptoms are still present, i'm hopeful that in the coming days i'll start feeling better.

i don't know what happened exactly with the remicade, i'm shocked it would stop working after 3 short months, and hope the next infusion will not be a repeat performance of the last.

side note: my hospital charges close to 9000 per infusion, thankfully my student health insurance covered all but 1200 and state insurance finally came through which supposedly will wipe out the bill.

Madcat25 said...
Remi does that... your next infusion should make it better and stay that way longer.

so wait sometimes remicade basically doesn't work at all? basically i got my last infusion 7/2 and saw my health decline soon after. granted i was never flaring until probably yesterday, but other days I was definitely dealing with symptoms.

I'm on the same boat I have been on Remicade for a while and it seems to not be working as much. We are going to do a blood test the day before my next infusion to check my levels. Dr might up the dose or add 6mp. Or we might have to go onto Humira. But once the Remicade is stopped can't ever go back on it again. And as you know Humira might not work. We started discussing removing my large intestine as we know I will have to eventually. At any point you can develop anti bodies or stop responding to Remicade. I'm sorry it happened so quickly for you. I would try taking out the supplements. And also how long has been since you were off the prednisode. Maybe the Remicade never worked for you at all.

From what I was told when I first started remi, by several drs and the pharamcist at the hospital, it works better with 6mp or imuran. I think its to keep your body from building immunity to it.
That being said, I started it in august of 2006, by october I was in great shape, but janurary I was starting to get bad again, by march I was on 60 of pred and worse than I was when istarted the remi and in april 2007, I had surgery.
So it can fail pretty quickly. Basically for me it lasted about 4 months. I did try upping the dose but that didn't help.
As for the cost, I cannot remember exactly how I got signed up for it but I was in a medical study and only had to pay 35 per dose. This was when it was first being used for uc though, so I'm not sure if something like that is still available. All I had to do was agree to talk to them every so often and let them see my records pertaining only to that. It was well worth it, my insurance would only pay a percentage and I would also have had to pay for the dr visit to receive it.
I hope it works for you after the next dose!

ScienceGirl said...
I would see if Uceris works at all, but I do think you might benefit from hydrocortisone enemas. My plan, honestly, is to go back on them if my symptoms start to return, and then go off them again assuming the symptoms go away again.

I won't take pred because of the side effects; I didn't have too many side effects with the enemas (well, it messed with my menstrual cycle, but since you don't have one of those, that's probably not a concern!).

i've tried cortifoam and enemas (the mesalamine and cortisone kinds) and they offered relief but not any kind of remission. uceris today was better overall, went 3 times compared to 8-10 the previous day... no blood is a good thing but i'm sure it'll take a good while for me to see some more "normal" movements.

i'm thinking of bringing up surgery with my GI again next week. while i don't want to do it, i feel like i'm running out of options.

Hope all is going well. Following up on the "bad batch" possibility/comment. I also experience the remicade infusion I received on July 3, 2013 at scottsdale health care not working after working for over 2 years of infusions every 8 weeks. After 8 weeks of going "down hill" (total inflamation of almost entire colon per colonoscopy after being in remission for over a year+) very quickly my next remicade infusion on August 28th "worked immediately" and very well. Subsequent Lab test from Prometheus indicated no significant antibody formation and that the remicade in my body was at "therapeutic levels".

How did your subsequent remicade infusion go?

As a matter of personal interest I will be exploring what quality control measures are in place to ensure "bad batches" don't happen. We will see. :)