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Ulcerative Colitis
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Posted 7/12/2015 4:30 AM (GMT 0)
Ohhh my, apparently I have a lot to learn about this disease.

For anyone who didn't see my most recent post, my doctor was going to have me start Humira but then we came to a mutual agreement that I should try to wean off the Pred. first again to make sure that the first failed taper wasn't just a coincidence.

Well, I haven't started the taper yet (he told me to wait until after my mini vacation) but over the last 3 days, I started seeing blood and mucous for the first time in months. The Pred. was keeping things under control for the longest time and suddenly, for no reason at all, some symptoms are coming back.

I'm terrified that I'm going to get as sick as I was pre-diagnosis. I guess I need to go on the Humira asap, but they're still figuring out the insurance/authorization stuff and who knows how long that will take. Plus the medicine itself will probably take a while to kick in.

I can only imagine that in the meantime I'll have to go back up to a higher dose of steroids again, but I've been on these things for 5 months and I'm getting very worried about long-term or permanent side effects.

I don't understand why my flare would suddenly come back if I haven't changed my meds. I guess I just didn't realize that could happen, but maybe I was naive. What gives??
Posted 7/12/2015 4:50 AM (GMT 0)
Oh man!!
That stinks I would advise starting the humira ASAP
If it's not authorized yet than its possible your doc can have you admitted to do it inpatient as insurance doesn't usually require preautjorization for impatient medications
But I'm not sure how your plan works
Call your GI ASAP
And feel better ASAP
Posted 7/12/2015 8:05 AM (GMT 0)
Tapering is difficult sometimes and can take time and a number of attempts. Can't count the number of times I failed to taper in one smooth go. It can be two steps forward one back. But I wouldn't give up hope that it is possible.

One option is to slightly increase to say 12/15mg and then start to taper again but very low drops over a longer period. I've always wobbled my way off steroids... But I'd say worth a shot before just upping the anti (as it were) to Humira. Less drugs needed the better. Good luck.
Posted 7/12/2015 9:57 AM (GMT 0)
Search google for steroid resistance colitis/ steroid refractory colitis.
Has something to do with interleukin 2.


My very simple take on med failures is that the immune system is so determined to destroy what ever it is

it is trying to destroy, that it finds work arounds to the meds.

It even can make antibodies to Remicade.


Old Mike

Post Edited (Old Mike) : 7/12/2015 4:04:25 AM (GMT-6)

Posted 7/12/2015 2:41 PM (GMT 0)
I agree with what Old Mike is saying. My UC did well on a few meds but it never lasts. I will be doing great for a few months or years and then it comes back more persistent than ever. I think it's just one of the challenges we face living with this illness. I would probably try to the humira sooner than later if I were in your shoes - hopefully your insurance gets things handled quickly.
Posted 7/12/2015 7:02 PM (GMT 0)
Because prednisone sucks, that's why, it's a bandaid and a weak one at that....if you had my GI he wouldn't even waste his or your time with pred anymore, he'd have Humira in the works for you as he did for me...in Canada where I live I was on it very quickly, within the same week we discussed me going on it I already had done my four loading doses...I saw him on a Monday and was taking my loading doses on that following Thursday.
Posted 7/12/2015 8:15 PM (GMT 0)
Most people do not get permanent side effects in 5 months. But it is possible. If you are watching blood sugars, and taking supplements for bone health, the chances are even lower.

But some people report effects form sort term use. It is all a big cost/benefit analysis.
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