My simponi is likely to be discontinued

Hello all, it's been a while since I've been on here and I hope you're all okay. Simponi really did the trick for me and I've been living a good UC-free life for a long time.

That seems to be the problem now though. I had a scope last week which showed basically no disease activity. And UK guidance states that biologic treatment should be discontinued after 12 months, unless a strong case can be made that the patient still needs it.

I know as well as you guys do that that's nonsense, and if you’ve found something that works then you need to stick with it. But their reasoning is it's a dangerous drug (not to mention expensive), and time on it should be regularly reviewed and limited if possible.

I’m just feeling worried and uncertain at the moment. I’m sure I will flare if it’s taken away – and if I stop and start again maybe it won’t be as effective anymore? And then I’d have to look at other options – does anyone know if there’s any evidence about the effects of stopping and starting? But on the other hand maybe if I’m doing so well, I should try and come off. They’re right, these are highly risky meds, maybe it’s silly to keep taking them. Maybe I’ll be okay.

My GI thinks I may be able to make a good case for staying on it longer as I’m allergic to 5ASAs, and high dose azathioprine gave me a lot of bad side effects. But there’s no guarantee. I just don’t know, do you think stopping is likely to be disastrous?

Love to you all

If you're unable to use mesalamine or azathioprine then I'd bet you can make a strong case for continuation.

Could you switch to another biologic like humira or remicade? Is that alowable?

Other than flaring, the big risk of discontinuing a biologic is the formation of antibodies to it, in your case Simponi. The risk begins after 10 weeks without Simponi. If your immune system were to develop antibodies during the time you're no longer on simponi, then upon reintroducing simponi it would either be less effective or no longer work.

Thanks for your replies

Just to confirm, I am still on azathioprine as well but just a low dose because I had issues with side effects on higher doses. I don't think it does anything for me though, just stayed on it because I read on here that it helps delay developing antibodies to biologics.

iPoop, that's very interesting about antibodies forming after ten weeks... I hadn't really thought about that. My GI said that there's not normally a problem reintroducing biologics after a period of rest, but I'm not sure how well I believe that.

Would a less frequent dose like DB with UC suggested be possible? I currently have an injection every four weeks, maybe I could suggest every 6 or 8 weeks or something. Sounds better than nothing. I think they've just scared me about the long term side effects of Simponi though...

I don't think it's just my doctor, and I don't think it's just about Simponi. It's just the NICE guidance for biologics unfortunately: https://www.nice.org.uk/guidance/ta329/chapter/1-Guidance

But yeah, clearly other people stay on it for years without being hassled :/