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Ulcerative Colitis
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Posted Yesterday 5:54 PM (GMT 0)
I read a lot about colitis sufferers having "flares", but I am unaware to what extent that really means. Does it mean the meds failed and stopped working so back to square one trying something different....or does it mean the med may still be working but inflammation has worsen so issues return like urgency and more frequent with loose stools.? I believe I may be flaring as they say.....just not sure. My last calprotectin score was 843.

Post Edited (WayneTX) : 11/28/2023 8:13:13 PM (GMT-8)

Posted Yesterday 6:18 PM (GMT 0)
A flare is basically any extent of inflammation, mild to severe, that causes symptoms not of the ordinary / normal when not flaring. Your calprotectin states inflammation, but wouldn't state the extent or severity.

I can share my experience about my flares...I'm in 5ASA oral and rectal. I still flare while I’m on maintenance rectal dosage, but it doesn't mean my meds are a failure. If my meds, at treatment level, didn't deal with a flare in its usual process, I would have to increase both oral and rectal and possibly add topical steroid oral and rectal. If that didnt help and symptoms increased (with no infection or other invaders found) , then I would consider the meds a failure, and I would consider other possibilities.

q
Posted Yesterday 7:27 PM (GMT 0)
What Q said. A flare-up simply means you have active inflammation. The opposite of a flare-up is remission (no inflammation). Meds can work to varying extents. I had a flare-up of about 3.5 years while we tried many different medications which each worked to different degrees.
Posted Yesterday 9:40 PM (GMT 0)
Any inflammation means flaring which is always bad. Symptoms also happen to most of us, too, to let us know there is inflammation like bleeding, pain and urgency. The medicine just isn’t working enough if your number is so high so you may need a higher dose or frequency or a new med. When did you start xeljanz?? I can’t remember!
Posted Yesterday 11:37 PM (GMT 0)
Every time I have flared I had to change meds because just using pred only provided temporary relief. The meds always stopped working for me.

If you don't have any symptoms and only the calprotecin score indicates inflammation, maybe do the test again to make sure it wasn't some sort of fluke.
Posted Today 4:02 AM (GMT 0)
When did you start xeljanz?? They started it while I was in the VA Hospital on August 3rd. It got so bad I was going to the bathroom 12x a day and could not go anywhere because I could not control my bowels. Diagnosed with severe inflammation via colon exam.....hospitalized 10 days. Starting to get more urgencies and going about 6x a day. I hope I don't end up back in the hospital during the Holidays. My next clinic visit is not until Dec. 18.....just submitted another stool sample today. Holding on!
Posted Today 4:06 AM (GMT 0)
CCinPA......no they did a lower colon exam as well during my hospitalization and examiner stated severe inflammation....more severe than the last one. The only other measuring stick was my calprotectin score (843).

Post Edited (WayneTX) : 11/28/2023 8:14:03 PM (GMT-8)

Posted Today 11:15 AM (GMT 0)
Hi Wayne I've forgotten - are you taking 2 x5mg tablets per day (or 1 x10mg), or do you still take 2 x10mg per day? If you're on the lower dose, you may improve if you switch to the higher dose. You could probably arrange that via email/phone without a face-to-face appointment. Many people on xeljanz do need the higher dose.
Posted Today 4:54 PM (GMT 0)
Wayne...you can consider adding rectal meds as well...mesalamine, steroid or both. Others on biologics etc have done that as well.

q
Posted 11/30/2023 4:06 PM (GMT 0)
poopydoop - I am taking Xeljanz 10mg twice a day. They upgraded me in early November from 5mg twice a day.
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