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I can't get off Prednisone

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Posted 11/17/2016 7:21 PM (GMT -5)
So because of insurance complications and all that I have been on prednisone for about a year and a half. Most of that time I was at about 20-30mg. I started remicade infusions about 5 months ago. I have noticed remicade does help, but since lowering my dose of pred consistently to 5mg my symptoms have come back. They are not nearly as bad, but still are quite debilitating.

My doctor hasn't been too helpful with information about coming off pred and she has said I should be able to just stop it at this point. Is this normal? How can I get off pred? Does it mean remicade isn't working? I've taken the test for antibodies against it and I have none. I'm sort of at a loss as to what to do next.

I am also taking mercaptopurine.

Please help confused
Posted 11/17/2016 11:23 PM (GMT -5)
It's hard to get off the prednisone
Do you taper slowly?
Even if you got it to 7 and hung out there for awhile, it's better than 10 or 20.
I had a very hard time getting off. It's important that you try. It's very bad for you. It's caused many problems for me.
Posted 11/18/2016 4:06 AM (GMT -5)
Oh boy.....
Posted 11/18/2016 6:29 AM (GMT -5)
After a year and a half on pred, you will be steroid dependent by now and thus need to come off it very slowly. Ignore what your doc says and ask for some 1mg pills. Go back up to the lowest dose which suppresses your symptoms completely, and then try tapering down by 1mg/week. From 5mg onwards you may need to cut the pills in half and go even more slowly.
Posted 11/18/2016 11:35 AM (GMT -5)
Thanks for the responses. So from your all experience it doesn't mean remicade isn't working? Just more dealing with withdraw from pred? That's what my hope is.
Posted 11/18/2016 11:46 AM (GMT -5)
It sounds like Remicade is working, but perhaps not completely. Is there any scope for increasing the frequency of your infusions or the amount of Remicade you have? Some folks can't go for the full 8 weeks between infusions, and so have them every 6 or even 4 weeks instead.
Posted 11/18/2016 3:58 PM (GMT -5)
I'd like to apologize for how my previous "oh boy" post appears. It was in response to a post that has since been deleted by the moderators. So now it's totally out of context.

Anyway, yes, I agree that you should try to get down to a lower dose of pred, and then - because you've been on it so long - you'll need to taper very slowly. 1mg pills are available, as NCOT said, and you should get them and drop by 1mg every week or two.
Posted 1/11/2017 1:14 PM (GMT -5)
I was on Pred years ago and had a really hard time getting off it. Same situation as you describe- I'd ween down to 5 mg and flare again, ween down to 5mg and flare again. I finally found a doctor who gets it that everybody's different. I had to take 5 mg for months, then 2.5 mg for months, then taking 1 mg, then 1 mg every other day. The doctor told me that it didn't make medical sense as far as what they're taught about Prednisone, but weening down really really slowly and taking doses way lower than are considered therapeutic or in any way effective was the only way I could successfully do it.
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