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Near remission but not yet over the edge...thoughts?

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Ulcerative Colitis
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Posted 5/7/2017 12:59 PM (GMT 0)
I've been in the "not quiet in remission club" since january 2017 and wondering what i need for the last step. Any thoughts to get me over into it?

I'm on remicade 5mgs a kilogram every 6 weeks, 75mgs of 6mp, 4.8grams lialda, and on nightly rowasa. I have 2-3 bms a day on average with the occassional 1 or 4 bms. When i jump up to 4 bms for multiple days (happened twice) with a little urgency and sign of blood i take 2.5mgs of pred, crush it, and add it to my rowasa enema for a couple days and it's like frigg'n magic: down to 1 bm a day. Suggestive that there's still something inflammed and lingering. My Fecal Calprotectin score is 46 (anything below 50 is normal), my C Reactive Protein is 7 (anything below 10 is normal). Pretty weird, normal scores yet ocassionally jumping back into near flare territory. A disconnect betwern symptoms and scores. Last scope was a year ago, not eager to get another but might have to see what's going on. Only guess is it must be really minor inflammation in the rectum that pops up...
Posted 5/7/2017 1:24 PM (GMT 0)
Well, you could increase the Remicade dose or frequency, but not sure if that's a path you want to go down.

When you start having 4 BMs a day, could you try a Rowasa enema twice a day instead of jumping onto pred? Pred works, but it's such a short term solution and there is a risk of developing resistance to it.

As for the disconnect between symptoms and scores, I don't think it is actually much of a disconnect as it seems. Your CRP is high within the 'normal' range (and some labs set the normal cutoff at 7.5 or 5 anyway). Ditto your faecal calprotectin. Ideally, CRP should be under 3 for maximum health benefits. So yeah, I can believe you've got some mild inflammation going on.
Posted 5/7/2017 1:25 PM (GMT 0)
Have you tried a round of uceris? Last year I needed surgery and couldn't take prednisone leading up to it. I started feeling some symptoms creeping up and did a round of uceris. It seemed to do the trick.
Posted 5/7/2017 4:44 PM (GMT 0)
Hi ipoop,

Your fecal calproctecin test is pretty solid for someone with UC. I think our scores are higher than the general population even when in remission. However, my last FC was 68 in March (lab uses 162 as the cut off, not 50) and the scope showed minor inflammation in the rectum. When I was in solid remission for years it went under 15. I am using that as my baseline and trying to get it back down if possible. You are probably accurate that you have some lingering mild inflammation.

I think you've tried VSL 3, but it may not be a bad idea to try again now that you are basically in remission. You can place VSL in the rowasa enema as an experiment to see if it's more effective? I have not tried it yet, but have seen others do it.
Posted 5/7/2017 4:52 PM (GMT 0)
I'd suggest steroid foam enema or suppositories and use them during the day.

q
Posted 5/7/2017 6:10 PM (GMT 0)
Hey ipoop,
Echoing what someone else suggested, I would see about adding Uceris foam--like take the foam in the morning and enema at night. Some people have had good results. It didn't work for me but that's because I'm flaring so bad (CRP 55, Lactoferrin 113). I bet it would help you get over this "hump".
Posted 5/7/2017 7:29 PM (GMT 0)
I think the foam is a good idea too. Maybe doing that once in a while would help. How about getting some uceris tablets too? Might be better to use one of those instead of the prednisone if needed. I hate pred. Have you had your 6mp levels checked lately? Maybe there's some room to improve there. Or add a canasa if it's right at the end - sometimes the enemas don't get that spot...
Posted 5/7/2017 8:03 PM (GMT 0)
Steroids of any amount just seem like a bandaid, i don't know...
Posted 5/7/2017 8:32 PM (GMT 0)
ummm, pretty sure everything you've done and are currently doing would be considered a band aid -
Posted 5/7/2017 8:48 PM (GMT 0)
Ipoop,

How about 100 mgs of 6-mp every other day or every 3rd day, and 75 mgs the other days? Just a little boost and in a month get some blood work done.

I'd try to stay away from the steroids as much as possible; speaking from experience. Sometimes you have to take steroids but I don't think that you're sick enough to warrant the risks.

Did this all start when you tried to get off of Remicade? I can't recall.
Posted 5/7/2017 11:15 PM (GMT 0)

iPoop said...
Steroids of any amount just seem like a bandaid, i don't know...

That's because they are. I've never taken a steroid of any kind where the symptoms didn't come straight back afterwards. This time round, Entocort isn't even making my symptoms go away :-(

I suggested the Rowasa twice daily idea. I know it's not the norm, but I googled it and found a few folks who took enemas twice a day when flaring. It *might* heal the remaining inflammation, you never know.
Posted 5/7/2017 11:20 PM (GMT 0)
NCOT: I'd have to get an increased rowasa dosage from the the doctor, 30 day supply now. I can ask for more per month though.

Keith: My wbc and platlets are just beneath the low range on 75mgs 6MP as it is. Doubt i can increase it. Might have to devrease my 6MP dose if this persists.
Posted 5/8/2017 12:41 AM (GMT 0)
John,

How about a 1-time double dose of Remicade at your next infusion?
Posted 5/8/2017 12:43 AM (GMT 0)
Have you thought about tweaking something in your diet, like dairy, or gluten, or something!! as it appears like you are so close, and yet something is just stopping you from getting there, it could be something your eating..you just never know with UC.
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