One year of flaring - what now?

Hello

I am on 2 steroid enemas a day and have been for 3/4 months. I am also on double dose infliximab, and have been for 6 months. I have been flaring for one year with two hospital visits where I was put on high dose steroids. With the very high dose steroids, things did settle down, but roared up once I was off them again.

This is complicated by an anxiety I have around taking oral medicine which unfortunately means I do not currently seem / feel able to take tablets ...

I'm not sure if the infliximab has ever really done anything - hard to tell - on the 2 steroid enemas, bleeding doesn't really seem to happen, and I had only been going like 4 times a day, but last few days the frequency has risen a bit and also more like total liquid - I can tell I am pretty ill.

Any advice for me here ?

I'd switch to Entyvio which uses a different biological mechanism. Some people find success with other biologicals like Simponi, Humira, or Cimzia but I think if you never responded to Remicade the chances are less likely that you'd respond to another anti-tnf biological.

I just got my hip replaced last month due to long term steroid use, I was only on steroids 3 times. You want to get off this stuff as soon as you can.

Have you tried 6-mp/imuran?

Thanks.

I am not sure about Remicade - I certainly never appear to have noticed any significant improvement.

My feeling is that the steroid enemas have probably stopped any bleeding that would have arisen and have cut away urgency and maybe even frequency / consistency to some degree, but always having symptoms ... and today has been the worst day for ages. This afternoon / evening I have been going & going.

So, let's see ... Entyvio, maybe methotrexate. More mesalazine enemas. See if I can get on tablets at some point. Maybe end up having surgery if that stuff doesn't work / kick in before things get serious? Okay. Well that's a kind of plan at least. What about different diets?

This illness ... geez! I know I have nothing to complain about compared to many, but this stuff is quite the bore! Anyway ... how's all that sounding? Time to contact the docs...

sorry for your woes. this was me 5 years ago.
Tried just about everything. Prednisolone was my only friend along with 6MP. Gave up on the heavy meds.

here is what stabilized me for the last four months. https://www.healingwell.com/community/default.aspx?f=38&m=3716844

Sound like you haven't had any success with Remi, though I admire your patience! It's time to switch!! Enough of this flare!

What are you eating?

Diet modification sometimes has a big effect on reducing symptoms for some of us.