Need advice, moderate UC but meds not agreeing with me

Hello,

I’ve had UC. For the most part, I’ve been lucky. I was diagnosed with UC in 2001 and while I did use prednisone I sort of just went into remission for around 14-15 years. I still did colonoscopies and the drs were okay with the no med thing. Then a year and a half ago it cane back, left sided. 5ASAs made me worse each time. 6MP immediately gave me a high fever and I was told not to take the 2nd dose. Uceris didn’t do anything. Long story short I went on Remicade and was good but after a few treatments my moderate symptoms came back. Then I started getting sores and erythema nodusum and what the dr thinks was lupus like syndrome plus I got a very bad respitory infection.

Well, I just did prednisone and Canasa the couple months and I was feeling better once the Remicade left but still had urgency and frequency like when this flare started. Overall I’ve always felt healthy except for a couple bad days and I usually have no blood. Sometimes a little. My new dr thinks biologics seem like too much for me since I’m feeling decent and I agree. But these symptoms make such an impact on life. Like leaving meetings when I really have to go and dreading some social outings when I’m having an active day. I have an appointment tomorrow because I recently tried sulfasalazine but it tends to make me go more. If I need to go to entyvio I’m okay with it but I’m just wondering if anyone else had this problem. I do feel like I can get better again but I need to find what will do it! I know I have to do something and I’m stumped as to what meds are left. The main thing is my urgency and frequency and I actually cannot wait when I need to go. I’d even be ok trying 6MP again but the dr says it’s dangerous and he thinks Humira would be bad too. The crazy part is I can have great days in between all of this. So I feel so close to getting better but yet so far when I have a bad day. Any ideas?

What you are saying makes sense and backs up what the docs have said. Since Remicade seemed to alter my immune system too much he said no Humira.

The rowasa gives me bad pain like Lilalda and apriso and balsalazide unfortunately. I am still using Canasa, not sure if it does anything but he suspects it’s not bothering me because it’s less systematic so I’ve kept on with it.

I did wonder about Xeljanz. Maybe it’ll be that or the Entyvio but I know the dr and I both are hoping to avoid it. He says it’s better to try and wait if I’m ever super bad. But, I’d like to get part of my life back!

Interesting, thanks! I will look into both of those.

There's no point of keeping a card up your sleeve if you're unsure whether it is a joker or an ace. Better to know if it works now, rather than just save junk for later.

I'd try entyvio or Xeljanz now, rather then save them for later. Xeljanz works quicker. Entyvio works slower. So it really depends on how bad off you are and what your current quality of life is.