What to do with a long lasting flare-up?

Um, your doctor is JUST NOW starting to worry about getting you off pred?! After you've been on it for 10 years?!

Holycrapballs.

I think your first step should be to find a new GI, quite honestly.

ETA that I'm not sure where 10 years came from.....I'm a bit sleep deprived b/c my six month old hasn't been sleeping well lately.  But still, you've been on it FAR too long! 

I second fruitgirl's opinion. Prednisone has serious long term side effects and you shouldn't have been on it for this long. Bone issues, eye problems, etc.

But wow! You are a stronger person than I if you have been able to stand being on pred for 5 years or so. I can't even sleep well when I am on 20 mg and it makes me feel absolutely CRAZY! It sounds like maybe you need to consider Remicade if a combo of mesalamines and Imuran isn't keeping you in remission. Get a new GI ASAP and see what they think.

You may want to try a biologic, like remicade, since you arent having the best results with pred or immunosuppressants. I would think you would also be on a 5asa like lialda, which is usually the first thing people try before steroids and the bigger guns... Lialda and asacol (now delzicol, stupid), are basically aspirin that are designed to release low in the gi tract, where you need it.

May not be a bad idea to get a new GI if possible, and yes, you dont want to be on pred for long if you can help it.

NOt sure about boost nutritional shakes, but there may be some ingredients in there that arent settling well with you. For example, some people with this condidtion dont tolerate ensure well. If you can afford a juicer you would likely get better results from juicing veggies like cabbage, kale, and maybe some fruits like apples, etc (staying heavy with the greens and not too much sugar/sweet things like apples), than with true fruit juices you buy, just my opinion.

Some have luck by either avoiding gluten and or dairy. You should do one at a time with a journal so as to see what helps you and what doesnt matter (if you do 2 or 3 things and you get improvement, you wont know which is helping you).

There are some studies that suggest taking fiber helps, some like metamucil, I take psyllium seed fiber (not the husk).

There are also lots of good studies and threads here you can peruse for hours.

good luck!

I ditto everyone else. As far as diet goes my best advice is to have an open mind. I mean a VERY open mind. Don't just assume that eating healthy is better for your UC. Everyone is different. You may want to do some experimenting on the fruit juices you are drinking. Fruit and fruit juices can make some UC'rs worse (me included), especially if you over do it. Not only do they usually have a lot of sugars in them but they can contain a lot of histamines, which can make your UC symptoms worse if you have a histamine intolerance.

I disagree with Pro, even 5 mg prednisone on a longterm basis is associated with negative outcomes that you do not want, especially at such a young age. Based on your prednisone use thus far you need to be evaluated for bone loss (DEXA bone density scan) and Type 2 diabetes as well as a visit to an ophthalmologist to check your eyes, particularly eye pressure/glaucoma.

As mentioned by all above you need a new GI. If this much pred is required to keep you healthy then it's questionable what, if anything, you're actually getting out of Imuran. It's criminal to keep you on steroids for so long without trying other drugs (e.g. Remicade).

to answer Probiotic - I always flare up due to stress. In high school I flared up right before or after state piano competitions, and in college usually every finals week. Thank God I didn't flare up right before our wedding! We've been married for three months and I'm just flaring up now. I expected it to come, doesn't make it any easier. And Puot, my doctor picked up on Probiotic's idea of just keeping me at 5mg. I was at 5mg during the longest remission I've ever had, from January of this year to August before I flared up again.

Sherbear46 - I've never tried any other medications.

Wow.

Your doctor lied to you about Remicade. All they do is make sure that you're not getting an infusion around the same time that you'd be giving birth. You can be on it while pregnant.

At this point, I agree with previous posters. You should not have been on pred for that long, and you need to get checked out to see what the damage from the pred was. At this point, given that you're on Imuran and it's not working well enough on its own, I would try Remicade.

I would also find a lawyer and sue your old doctor for malpractice. Keeping you on prednisone for SIX YEARS (?!!!) and lying to you about a less harmful treatment was, at best, a terrible mistake.