Add me to steroid dependent club

Uceris seems to help best with mild/moderate inflammation. Severe requires high doses of prednisone. It's worth a try.

Yes, rowasa can loosen stool slightly as not all of it's liquid is absorbed. It's only 60ml of fluid, not a lot, so it's not going to open up the water spigot to max, by any means. Certainly Sulfate allergies can cause a drastic worsening of diarrhea. Enemas have sulfates in them.

I don't know about demand, but you can back your request up with evidence, and ask for their rational should they say no. Perhaps there's a good reason. Certainly, 4 week intervals are common here, a number of posters use that interval. Sometimes even a 15 mgs per kilogram dose is even used (not that common). However remicade does have a maximum effectiveness and if antibodies are in play, then there might be a point where it's time for a different medication or surgery. Have you had a infliximab trough (minimum) concentration and antibodies blood test done within 24 hours of your next remi infusion (prometheus or labcorp do them)? You could certainly try another biologic, perhaps entyvio which is a different type of biologic.

There's always other treatments to try (humira, simponi, entvyio, cyclosporine, methotrexate, stellera clinical trials or Xeljanz) if you're so persuaded. Some fight tooth-and-nail to try everything available before going to surgery. Others try one or two biologics then call it quits, go to surgery. It mostly depends how bad your current quality of life is, and how long you can personally budget yourself to fight and try other treatments.

Have you had a surgery consultation yet (a no obligation q&a session)? If not then perhaps explore that route to see what it'll entail, and get your questions/concerns answered. Knowledge is power and all of that sorta thing

Your gastroenterologist is saying no because of that Prometheus test result. You haven't run out of remicade, infact, you had too much (or at least an ample amount). So increasing frequency or dosage probably wouldn't help.

My gastroenterologist said once that having bad uc symptoms and having "no antibodies and a strong amount of remicade in your system" is more indicative of failing the tnf-alpha class of medications (remicade, humira, simponi) and that if he saw that in my results then we'd go to one of the other biologics that uses another mechanism of action. Entyvio (a Madcam inhibitor) is the only one currently approved for uc. Off label and clinical trials are available for Stellera (IgG1k monoclonal antibody) and Xeljanz (a jak inhibitor) both of which would also be sensible alternatives to tnf-alpha biologics. Most certainly a point of discussion to bring to your gastroenterologist.

Last c diff test was 12 weeks ago. I was virtually symptom free until last night. I felt it creeping up since Monday and it seems to correlate with the prednisone taper.

I'm waiting to hear back from my dr and I assume cdiff test will be called in as that's his standard protocol when I have symptoms.

I have appointment in July and will discuss the non tnf drugs. Really appreciate the info. My husband is a math/science guy and I'm more the arts/language half. He will likely like your info and do some research to present at my next appointment.

I hear ya! And appreciate your advice on both sides of surgery. I don't take it lightly. I have 2-3 appointments a week between remicade, follow ups, second opinions and my pesky girly problems.
And meds upon meds.

I have huge ovarian cysts despite having no ovaries (medical mystery here!) and my ob gyn feels if she can get them out that my flares may subside or at least not happen as severely. She is married to a GI and my case has become their dinner conversation.

Unfortunately I cannot be flaring or any steroids before surgery so I'm in a catch 22. If the ovarian cyst surgery doesn't work then I'm heading to Cleveland. I want my life back. I want to travel without fear. I want to sleep in the same bed as my husband and not stink him out with my smelly farts. I own a children's cooking school and have dreamed of opening them all over the country but my body won't let me. That's not acceptable to me.

Ipoop and nssg- I don't know what I would do without your advice. It's not said nearly enough---thank you thank you than you.

Currently in 100mg of Imuran. It's helped a little.

Ugh! I always have slightly looser stool the mornin after I use rowasa. I have cysts on my left ovary and when they flare up my UC is always creeping around. I am so sorry you still have them despite not having ovaries. Hope you get some relief soon.

My doc had my Remicade dosage upped as the last final "push" to see if it helped. When it didn't work is when I decided to have surgery. I had tried everything except Humira and I was too fed up and disgusted at that point. I only responded to pred at high doses.

Did your doc say why he didn't want to up your dosage? Sorry if I missed that...I read through quickly.