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Ulcerative Colitis
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Posted 12/15/2015 7:26 PM (GMT 0)
Welp, it happened. Not only three months out and I am back in the hospital again :(

I've been taking Humira bi-weekly and we've been trying to taper off Prednisone. From September to late October I was taking 80 mg of Prednisone daily. We started tapering off 10 mg a week and it was going well until we started going down to 10 mg a day. Was never able to get below 10 mg a day. Apparently I am dependent on the steroids and they are not sure if the Humira even did anything. We are hoping that with bumping back up between 60-80 mg of Pred again along with Humira every week when I discharge we can get it right, but I am honestly nervous that I will end up back here again in 3 months when we re-attempt steroid tapering. Really hoping I am not here for Christmas.

Anyone here had a case similar to mine?
Posted 12/15/2015 8:26 PM (GMT 0)
I would request to see a doctor who specializes in adrenal fatigue
Even tho it's not exactly the same they should be able to help you.

Just remind us what meds you have already tried.
Posted 12/15/2015 8:27 PM (GMT 0)
10 mg a week seems like a fast taper for someone that is steroid dependent. Could you try tapering slower? 5 mg a week seems like a more reasonable taper. Are you taking rectal meds? I wonder if when you get to that last 10 mg if you can switch to hydrocortisone enemas? And 80 mg of Pred a day also seems like a race horse amount. Why so high? At that amount, it seems like you might as well be on IV steroids.
Posted 12/15/2015 9:17 PM (GMT 0)
A quick taper from 80-10mg is okay. If you are steroid dependent, as you say you are, it's going to be very hard to go from 10mg to 0mg. This is where your taper needs to go very slowly.

Sue
Posted 12/15/2015 10:08 PM (GMT 0)
I agree with sue. If you go slow enough, you will be able to tell if Humira is doing anything. if not, can you try something else, remicade perhaps? Remicade has the best success rate for UCers and the dose can be tailored. The pens are what they are...
Posted 12/16/2015 12:15 AM (GMT 0)
Thanks for the replies.

In regards to medications, I've been on Apriso 1.375 mg (daily), Prednisone 80 mg (originally, tapered lower throughout, most of the time was between 60-80 mg), Dicyclomine 20 mg, and Zofran (8 mg), as well as Humira bi-weekly.

We had talked about Remicade but that brought up issues with the GIs. One of the GIs felt it would be worth it for me to transition into Remicade but my primary and his partner feel it would be prohibitive to overall treatment and both seem to be in agreement to doubling down on Humira and re-booting the steroid use.

I am a bigger guy (~310lb), which is my theory for the increased steroid use. Supposedly Remicade is tailored to weight where as Humira is a general dosage for all-which may be affecting its success rate.
Posted 12/16/2015 1:48 AM (GMT 0)
Is that 1 apriso at 375mgs each? A dose of 1,500 mgs a day (or 4 pills) a day is more typical for those on Apriso.

Yes, remicade/infliximab is weight dosed, I'm on it and they weigh me each time.

It's true that humira/adalimumab is not dosed on patient weight, rather everyone gets the same initial fixed dose. It is later adjusted based on patient response. I found a few scientific journal articles stating it was less effective in patients with a higher bmi, and perhaps it should be weight-dosed.

Personally, i'd trust a gastroenterologist's opinion more than a primary care doctors...

m.gut.bmj.com/content/62/Suppl_2/A18.2

www.ncbi.nlm.nih.gov/pmc/articles/PMC3128133/
Posted 12/16/2015 1:50 AM (GMT 0)
I'm both steroid refractory and steroid dependant. Failed trying to get off pred twice now, and am currently self tapering since my doctor is trying to go down 5mg a week, and I think that's still too fast. I'm trying 2.5mg a week, currently at 10mg. I'm also on entyvio which is supposed to help steroid dependence. Maybe something to talk to your doctor about.
Posted 12/16/2015 3:49 AM (GMT 0)
ahh so sorry you are going through this. i always ended up in the hospital once i got off prednisone. i'd feel "okay" at 5 mg and then a few days after i'd be off of it, i'd be back in the ER with a full blown pancolitis and appendicitis flare and then another week in the hospital on IV steroids and antibiotics again. just horrendous. the only way i got off of prednisone was using nicotine. i was worried i was "poisoning" my body but steroids have done way more damage to me than nicotine has.

i really hope the humira weekly can be enough to get you off of prednisone. if not, definitely try remicade or simponi. i honestly dont think simponi does much for me at all but i take it anyway.
Posted 12/16/2015 4:23 AM (GMT 0)
this tapering method may work for you
10 mg for two weeks
than two weeks of alternting between 10 and 5 mg and than two weeks of 5 mgs and than two weeks of alternating between 5 and zero miligrams of pred
I know its a long taper but it tricks your adrenals into working again by doing the everyother day
you will still get withdrawal symtoms and they will be annoying

if you feel the humira is not working take the test to see if you have enough in your serum or if you have developed antibodies
than adjust accordingly
remicade is not a bad idea but its best to stick with a biologic inless you must switch as tehre are not too many options and oftentimes the first one that people use is the best one for them...
Posted 12/16/2015 3:36 PM (GMT 0)
I tapered from 10 once at 1 mg every 10 days. Then when I got really low, I went to .5 a week. it took a long time, but it worked.

The deeper issue that I now realize, in my case, what was the point? I got another couple years, but I ended up having surgery anyway, might as well have had surgery back then.

I definitely think remicade is a better option than humira. If you don't have luck tapering, push to try remicade.
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