Simponi / Gollimumab making me worse?

Hello everyone, I am new to the forum, but unfortunately not new to UC. I have been putting up with the symptoms for the last 15 or so years. This last year I have had a flare up which is proving to be really difficult to control, having had flare ups in the past which eventually been put into remission with prednisone tablets, this time seems to be different and the flare up is proving much harder to subside. I essentially have moderately to severe proctitis now, about 5 cm, which just won’t budge.

This year I’ve been through two doses of high dose oral steroids, mesalazine suppositories and more recently predfoam. I’m on azathioprine and masalazine long term and in early November started on golimumab/simponi injections. I was very concerned about starting the simponi as at the time I was feeling really crappy, and my immune system felt trashed. So far I’m now into week 13, and all I’ve really experienced is side effects and after my last injection 8 days ago my symptoms have really taken a nose dive again, and I’m becoming almost incontinent. Mostly watery blood which is very hard to keep in!! It just doesn’t feel like it’s doing anything good.

So my question, is what are other people’s experiences of simponi, I’ve read on here that some of you have had great success after just 6 weeks, but for me I’ve not seen any improvement yet and wonder whether it’s worth hanging on in there? My doc said give it 20 weeks, but i’m not convinced. I’m reluctant to try any other meds while I’m on simponi, such as high does steroids again, because I need to understand which meds are the ones working, and I don’t want to be on a third immune suppressant drug either.

Ditto the stool test thing, clostridium difficile can sneak up on us and doesn't respond to UC meds at all. Rather c diff requires antibiotics to beat (steroids and immune suppressors make c diff worse.)

What's the fear in combining simponi, azathioprine, and pred simultaneously? You still have a functional immune system even with those meds combined, you're not going to be a bubble-boy/girl on them lol. I did that with remicade, 6mp (remicade is a sister med to simponi, 6mp is a sister med to azathioprine), and pred simultaneously and I was fine. Our immune system needs to be taken down a few pegs at times.

I am not as familiar with Simponi. I would ask if the frequency can be increased between Simponi shots (I believe they have you on monthly shots in maintenance phase, but twice a month should be possible if you ask). I would give Simponi 6-8 weeks for signs of an initial improvement, and a longer series of months for a full remission. I would ask about having a blood test to check your Simponi levels and whether you have any anti-simponi-antibodies developed. Not sure your country or what labs are near to you, however, here's the lab test I can get in my area for it:
https://www.labcorp.com/test-menu/39041/golimumab-and-anti-golimumab-antibody

about 65% of us respond to a biologic like Simponi, give it a fair shake of 6-8 weeks, and then move on to another (as, unfortunately, nothing works for 100% of us).

When I got c.diff I was only on two, Simponi and Prednisone.

Celeriac said...
iPoop my doc is also reticent about combining pred + immunomodulators + biologic. She says they see more opportunistic infection than gains from combining them. Their standard of care is to get you off pred first, or nearly off, to judge the effectiveness of the biologic and then add the immunomodulator of it seems warranted with biologic response.

I don’t know if this is a newer approach or what; just had a convo about it at my last appointment while I was begging for them to throw everything at me.

I'd get a second opinion from another gasteroenteroligist practice before buying into that lol. Never heard it before, and I've been reading this forum for 7 years now. I'd call it ridiculous.

iPoop said...

Celeriac said...
iPoop my doc is also reticent about combining pred + immunomodulators + biologic. She says they see more opportunistic infection than gains from combining them. Their standard of care is to get you off pred first, or nearly off, to judge the effectiveness of the biologic and then add the immunomodulator of it seems warranted with biologic response.

I don’t know if this is a newer approach or what; just had a convo about it at my last appointment while I was begging for them to throw everything at me.

I'd get a second opinion from another gasteroenteroligist practice before buying into that lol. Never heard it before, and I've been reading this forum for 7 years now. I'd call it ridiculous.

They’re the local research hospital’s IBD group. A second opinion from any other area doctors would be a technical downgrade. 😂 I’m specifically ok with it because 20mg of pred left me seriously immunocompromised, with nothing else on board. Currently on 40mg to control symptoms and I’m ok with the reticence.