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How long have you been in a flare-up?

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Posted 1/31/2019 10:28 PM (GMT 0)
Hello,

I have been in a flare from my UC for about 2 years now. In the beginning i was going about 10 times a day. As i started taking medication I got it down to an average of 4 times a day....again this was all about 2 years ago in the beginning.

I have tried all sorts of medication in this span ( humira, entyvio, steroid enemas, methotrexate, weaker medications, and have been on prednisone for 2 years straight at fluctuating doses). None of these medicines have worked. Still going roughly 4 times a day with a lot of mucus, some blood, and loose stools.

The current move my doctor has for me is to try remicade or xeljanz next. Does anyone have any experience with these?

Also, i have been on prednisone for 2 years straight and still in a flare all this time. I am not sad or anything, just the way the cookie crumbles I guess.....
How long was your longest flare?
Posted 1/31/2019 10:39 PM (GMT 0)
Hi I've been flaring 3 years and counting. Had periods of pooping 20x per day and red toilet bowl but mostly it's been 4-6 x in the morning with little blood - the biggest handicap for me is urgency and abdominal pain. My inflammation is now mostly confined to the rectum. Have been off pred for 2 months (thanks entyvio) after being stuck on it for 22 months. It gave me osteoporosis (in my 30s), now taking drugs to reverse that. I started xeljanz 2 weeks ago and I'm not sure if it helps but i do not regret my decision to try it because it was (hopefully is) a chance to lead a symptom free life for a while which was not possible with the other drugs. I had a partial response to remsima (biosimilar to remicade) -
which I tried before entyvio - but had to take double strength dose and still could not get below 5mg pred so i gave up on that too. Hope you find a solution soon smile
Posted 2/1/2019 12:26 AM (GMT 0)
Xeljanz was awesome in that it seemed to begin working very quickly. Unfortunately, I did not tolerate it and the gastro side effects landed me in the hospital. *This is extremely unusual*

I’ve been flaring since March 2018. Most of that was just inconvenient, but I’m now at the point that I can’t keep weight on, even with pred. Trying Remicade now. If it doesn’t work: surgery.
Posted 2/3/2019 7:39 PM (GMT 0)
I had my first bad flare 4 years ago. I've been in my current bad flare for several months now. Was on Humira for over a year with no results. Than on to Remicade, last dose 10 mg/kg every 6 wks. but couldn't sustain remission for longer than 3 wks.out of 6 plus Dermo Dr. advised me to change meds because of skin issues he thought were caused by Remicade. So my Gastro Dr. reluctantly moved me on to Entyvio 6 wks. ago with no results yet and the worse flare I ever had yet. Now we have added a Predisone 60 mg. taper to the mix 7 days ago. No positive results felt yet, actually I am getting worse. And it turns out the Dermo doc was wrong my skin issues were not caused by the Remicade. So I am really getting to the end of my rope with all this and am thinking about calling a Hospice to see if they can at least help me manage the pain of this incurable illness.
Posted 2/3/2019 8:29 PM (GMT 0)
I was in an 18-month flare when I had surgery. I had been up and down over the entire 10 years I had UC. I never had very long remissions, maybe 6 months, with ups and downs - unless I was on a higher dose of prednisone, but I didn't want to deal with the long-term effects of that. I found living with UC to be very stressful.
Posted 2/3/2019 11:46 PM (GMT 0)
NewMe. If u elect to have surgery it will be a great decision. After 32 years of the UC monster I am no longer a hostage to this disease. Careful with all the meds. Don't wait til your so weak that u can't have surgery. Good luck my friend

Post Edited (3timechamp) : 2/3/2019 6:48:46 PM (GMT-7)

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