Who has had UC for over 25 years and never taken anything stronger than mesalamine?

I wish...

Me...for 33 years.

q

I was diagnosed 10 years ago approx and have only taken mesalazine so far... I was on 6 g daily at first, orally, + 2 g supps until I reached remission (about 1 month from diagnose). From then, 3 g daily orally. If I am flaring, I increase to 4 or 5 g daily orally + 1 g supp at night which, according to doctor, is waaay to much and I should consult her and she should probably advice me to add other stronger things to the mix instead of increasing dose of good old Pentasa. So, I am not too compliant and I manage my dose a bit according to flaring or remission, and so far so good.

Of course, the extra dose I require sometimes may be working its way to creating something nasty for me in the future, who knows. But if possible, I prefer to remain on mesalazine instead of exploring side effects of other chemicals.

Trinxy, I used 9g mesalazine for years (4.8g orally and 4g rectally) and no adverse effects.

I've had UC for 27 years... very sadly allergic to all 5-ASAs. Only thing I've taken is budesonide (from both ends). Terrible symptoms currently though and considering surgery.

19 years and counting...nothing but 5 ASA with some suppositories and enemas thrown in the mix. I have never gone down in dose...just upped. In 2003 I was in a blind trial for Asacol...a new drug at the time. It was great...I got free Asacol for almost a year!

Hi, I have been taking 6 tablets orally (=2400 MG ) twice a day. That's 400 mg 5 ASA. I may have dipped down 18 years ago, after the 1st year for a while. And as I began getting more and more flares, my dose just went up. The generic drug comes in a smaller pill size, and this has confused both my GI docs. And the pharmacist, not to mention myself! LOL.

I've been able to get prescriptions from my GP most of the time. My fĺares have increased over the past 3 years, and it takes many months or up to a year to just talk to my new GI doc. So I suppose my colitis is still doing ok on this dose. I'll
Find out at the end of May, the results of the last colonoscopy biopsies I had last month. I'm assuming my colon looked ok, as the GI doc never talked to me after the procedure....they are still not seeing patients in office.

Me!

Re diet change, I dont. But I do have nausea with flares, so if something doesn'tappeal to me, I may eat less or nix it.

Re flares...I increase rectal meds from my maintenance. I've always TAPERED, according to symptoms, to a maintenance. I sometimes increase oral to 3200mg daily from 2400mg but usually only for a week.

My flares have changed over time, because I treat at earliest symptoms. Took many many years to get to the point of understanding those symptoms. I do not depend on my doctor to say yea or nay. I've never had calprotectin testing. I never wait for bleeding. My scopes show architectural changes that I had in the past are now in the normal range...so a huge shock to me.

As far as time re meds...depends on symptoms. I'll usually do 3 weeks of nightly to start and go from there. In the first 10 years or so, it wasn't unusual to be 2 or more months on nightly enemas. Tapering depends on symptoms, so at least a month or 2 of every second night. If all is back to my normal, I would go down to my maintenance of every 3rd night. Initially I was tapering to once a week...but it was definitely to much of a span for me. Twice weekly is what's minimally recomended for maintenance. Basically, the butt rules the game. If you taper too fast, you will know and can easily increase back to previous dosage of you drop too quickly. Re oral tapering...slow taper as well, not a quick drop, especially if your flare is past the sigmoid.

q

poopydoop said...
Trinxy, I used 9g mesalazine for years (4.8g orally and 4g rectally) and no adverse effects.

Same here. For over a decade. I don't know why Trinxy's doctor said it's "waaay" too much. Because it's not.

ilovefood said...
So here's the question I have for you all. When you do flare, do you just add rectal meds, increase your oral mesalamine, or both? How long does it take these changes to stop the flare? Do you change your diet? Have your flares changed at all over time?

So don’t really “flare” …maintenance dose of asacol HD and eating things in moderation (avoiding things that aggravate me) seem to keep everything under control.
Moderate dairy intake with very limited yogurt (seem to be intolerant of yogurts) … limited fried foods, gluten in moderation, avoidance of preservatives and I have completely eliminated alcoholic beverages and on those occasions when my gut feels “colitisy” eating white bread seems to be calming

IamCurious said...

I will remember this thread the next time someone says that sooner or later mesalamines are bound to fail so it is best to attack UC at the outset with Big Gun meds with their possible major side effects.

I don't think anyone has said that. It is better to go on "big gun" meds quickly than spend months or years yoyo-ing around with prednisone. Or live with low level inflammation just because the symptoms are "manageable "
Not sure any doc would go straight to biologics without trying mesalazine first.