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Stubborn flare

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Ulcerative Colitis
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redseal25
New Member
Joined : Oct 2014
Posts : 13
Posted 8/28/2019 4:43 PM (GMT -7)
So it's that time again... started flaring in April after 2.5 years of remission bliss. The only med I was taking was imuran 150mg which kept me in sweet sweet remission. A SEVERE flare up back in 2016 landed me in the hospital for a little over a month with nothing helping. Finally the remicade kicked in after multiple loading doses due to 40+ bloody bathroom trips (and plenty of accidents) a day. Lost 75lbs in that time frame... Continued the remicade for 3 more doses and had a reaction so discontinued with no issues and was able to stay healthy. Anyways, i started slipping up with my imuran and taking 50mg a day instead of the 150mg. Everything started going downhill earlier this year with bloody movements without pain. Went to my GI and he started me on canasa, budesonide and switched the imuran to azathioprine (dont know the difference). Still had issues but figured I could manage with those meds. Went for a scope on the 12th of August and of course my whole colon is inflamed and ulcerated again. On 60mg of prednisone, 150mg of azathioprine, 1000mg Canasa twice a day. GI wanted me on 80mg of prednisone but I refused and figured 60mg is far more than enough. It didn't work for me when I was in the hospital. Some days things are okay (3 or 4 dark blood and mucus stools) and others are pretty bad (10 to 15 dark blood and mucus stools and sometimes all liquid blood). So I went back to my GI and now Humira is the plan. Just got the phone call that it has been approved and a nurse will come out to show me how to inject myself. I'm excited to get back into remission but scared to death about the side effects. Seriously contemplating surgery if and when I get healthy. I will be on 3 immune suppressant drugs when I get this Humira and that's what worries me. Does anyone have any experience or insight about that? My GI hasn't discussed anything with me about that. Sorry for the long post!
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16177
Posted 8/29/2019 6:27 AM (GMT -7)
Sorry to hear you're flaring. Everyone flares eventually, so I would try and not beat yourself up too much over it.

So, you are a little over 2-weeks on 60mgs of prednisone. Any improvement yet?

Did they discuss increasing the remicade dosage or injection frequency? Did they do a remicade concentration and antibody blood test?

If you're whole large intestine is inflamed, then a mesalamine enema might be more effective then a canasa suppository is: rowasa/salofalk/pentasa enema.
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redseal25
New Member
Joined : Oct 2014
Posts : 13
Posted 8/29/2019 7:57 PM (GMT -7)
Hey John. The prednisone seems like it has slowed down the Bm's a bit and also the tensemus some as well but nothing drastic. The remicade was stopped after I got out of the hospital about 3 years ago due to a reaction I had to it. I will be starting on humira as soon as it gets shipped. I asked my GI about enemas and he tried to say that it would be pointless because my whole colon is involved... I dont think that makes much sense... I dont have any info on humira in addition to azathioprine and prednisone all together. Seems like I should taper the prednisone and get off of the aza too right?
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16177
Posted 8/30/2019 3:53 AM (GMT -7)
No, stay on humira, aza, and pred together. It takes a lot of meds to initially achieve a remission and less to sustain a remission. You can whittle down to just the med you need after sustaining.

I'd call b.s. on the docs point of view on enemas. Our most severe inflammation is always within the rectum, and our worst symptoms come from the rectum.
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Gayu
New Member
Joined : Oct 2011
Posts : 2
Posted 9/5/2019 1:46 PM (GMT -7)
This is just my opinion, but honestly I would consider surgery. I was on Humira for 4.5 years before deciding to go for Surgery. 4 of the 4.5 were ok with just minimal flares that would go away in 3 weeks. But towards the end it was just out of control (even with Humira once a week) that I ended up flying to Cleveland Clinic for the surgery. What was surprising was that at CCF the top docs did mention that biologics in many cases tend to lose efficacy over 3-4 years and they have been seeing it more often. I did not have any negative side effects with Humira, but my advise would be (especially since you pancolitis) to go ahead and get the surgery done. There is a small chance that Humira can give you 7-8 years without a surgery, but i would rather get it done when I am younger.

Also, i strongly suggest going to CCF or Mayo to get the surgery done.
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redseal25
New Member
Joined : Oct 2014
Posts : 13
Posted 9/5/2019 4:09 PM (GMT -7)
I've been contemplating getting surgery for a few months now but I for sure want to get healthy before (if possible) just to lessen risks and all that. I got my Humira loading doses today and it was a piece of cake. Still on 60mg of pred and 150mg of aza. The flare seems worse considering the bleeding hasnt subsided at all. Just hoping and praying that this combo of meds knocks this flare out. But I'm all for surgery. If that will get rid of disease, then that's what I want. Sick and tired of being sick and tired!
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16177
Posted 9/6/2019 7:36 AM (GMT -7)
Generally you have to fair at least two biologics before a colorectal surgeon will touch you.
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