Can't get flare fully under control

Hello. New here!
I was diagnosed with left sided uc about 8 months ago after suffering on and off for past 3 years. Started of with 2.4g of mesalamine which gave 100% improvement which was great. Then had a mini flare few months later which was quickly brought under control by upping dose to 3.2g. All fine until 6 weeks ago when had a pretty bad flare. Back to full on urgency,blood, mucus and d. Due to uc being left side and a bit of the way up ibd clinic gave me 4 weeks of asacol 1g foam enema and told me to max out mesalamine at 4.8g. It's been 3.5 weeks and whilst things have improved lots I still can't get totally out of it. I still have some urgency where I pass mucus/small amount of blood only. It's been like this for a week. The d has stopped mostly but now only going every couple of days with this mucus/blood in between. The blood is minimal now tho. Should I stick with this med regime or ask to try something else? Really hate the urgency more than anything. Thanks x

I'd stick with your treatment plan for a few more weeks, to see if you heal more. Healing is often slow.

I'd suggest you stick with the regimen of 5ASA (mesalamine) oral and rectal...but ask for a stronger rectal such as Salofalk or Pentasa. 4g dosage rather than just the 1g.

OR...as RockerGirl suggested try the 1g twice a day.

Before you ask for the steroid rectal enema, ask for higher dosage mesalamine.

q

No need for a higher dosage of oral 5ASA.
I assume the steroids your doc is meaning are systemic. We're talking topical.

Mesalamine foam comes in 1g dosage from I read in the past. Higher is in liquid....1, 2, & 4g, depending on the brand.

Do the research and prepare for your questions with knowledge. UC willl have inflammation at the rectum....and it will probably be worst there, hence the higher 5ASA mesalamine dosage there.

Keep us updated.
q

Well...leadjng specialist or not, you dont need systemic steroids. Run like freaking hell, or say you'll only firat try increased dosage of retention enemas.

Your body, and I'll tell you mynexperience of the first year after diagnosis...

I was put on asacol oral 400mg 2x2 daily before my scope. The day of my scope, i was put on 3 400mg x2 plus 4g retention enema Salofalk. I was on them nightly for at least 3 months and tapered off.
I went up and down a bit, increased again and then off. By 2 months afterward, i was in full flare and had to see another doc in the clinic, because mine was called out of town on family emergency.

The other doc said that if he were my doc he wouldnt waste time on the 5ASA oral/rectal because it takes much longer to get a flare under control and that i should be put on prednisone. I bluntly stated I was thankful he wasn't my doctor. I agreed to use a steroid foam enema till my doc came back, and he gave me a script for that pretty much guaranteeing I would be in trouble bt then regardjng my flare.

It did help and once my doc came back, I resumed treatment with Salofalk enemas.

I did once ask my doc during a nasty flare years later, if i should go on pred. His response is be patient amd let the med do its thing. It did.

Up to you, but i would suggest you negotiate at this point since you are early in the game. Plus....prednisone or ilk doesn't guarantee younwont have another flare....plus you'll be going through the guaranteed side effects of the steroid.

Whatever you choose....and it is your choice in truth....keep us updated.

q

Yep, around then, lol
Actually it was Jan. 1989

I'm opposed to the use of prednisone if the topical options are skipped and not exhausted.
Some people need it, but I didn't....and it sure doesn't sound like the OP needs it either.
That doc was dissing mine. not cool.

As one of my sayings goes....one's experience is only as good as those who you have it with. One is at the mercy of the doctor. We've seen lots here who are put on pred first thing, no rectal meds, bad side effects, still flaring, no stool testing, and some not even seeing the actual doctor and only talking to an IBD nurse.

Besides...for me, and I had a great doctor first thing....I know for a fact that with my depression and mental being and the side effects, I'd probably not survive prednisone very well.
I have a few people in my life who had been on prednisone for well over 5 years. Some with no psych issues, some with.

q

If he says there are no other options...which we've given you a few.......at leasr ask for another prescription and enough refills to use it twice a day.

Are you on probiotics?

Yes...systemic steroids are extreme for your flare at this point since you are improving.
What's the difference to try other options or have you on systemic steroid with a VERY LONG TAPER???? Do you see my point?

q

Lisa...absolutely. Insert it after the majority of mornong bms.
Just remember that you have it in should you have any gas. Residue from the supp will slip out because it's, well....slippery. i use proctocedyl supps on occasion and have once in a while just remembered in time, but once in a while forgotten and remembered just after....before i make a mad dash for the bathroom. Never have done it in public, however,

q

You're prepared...that's good!
q