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Tapering off prednisolone after using for 4 years

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Ulcerative Colitis
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Posted 10/1/2016 10:28 AM (GMT 0)
Hi,

My husband has had ulcerative colitis for 4 years and has been on prednisolone for pretty much the whole time. He could never get off the steroids without the UC flaring. He had a total colectomy 3 months ago and his UC is gone.

He is now having a hard time tapering off the steroids. He started on 25mg and has tapered to 5mg the last 3 months (since his surgery). His doctor recommended a very slow taper.

He gets really tired, has muscle cramps and joint pain and generally feels crappy.

Is there anything we can do to lessen the withdrawal symptoms? Are there any supplements he could take? He is relatively fit and healthy (28 years old) and exercises every day.

Has anyone had any luck tapering off steroids after such a long time? After reading some horror stories on the internet, I'm really worried he will never get off them.

Really appreciated any help.

Thanks,
Posted 10/1/2016 12:35 PM (GMT 0)
Generally slow is best when tapering prednisone after such a long time. You want to reduce the size of each drop. Pills can be cut in half to do 2.5mg drops. You can get 1 mg pills. Other tips are drop the dose say 2.5mgs the first day, up to your prior dose the second day, drop the dose by 2.5mgs again the third day, as that eases the drop.

" He gets really tired, has muscle cramps and joint pain and generally feels crappy. " All of these are steroid withdrawal symptoms. They should ease 3-4 days after a drop. His adrenal system has been asleep a long time, once he gets below 10mgs it should begin waking up again. It might take some coaxing though, an endocrinologist might be able to help if you experience troubles.
Posted 10/1/2016 2:03 PM (GMT 0)
What happens if it takes longer for the symptoms to ease? He feels crappy for 1-2 weeks after every drop. He then stabilises and then drops again and feels crappy again.

How do we know if his adrenal gland has woken up as he is now below 10mg (and was coping fine on 6mg)?
Posted 10/1/2016 9:43 PM (GMT 0)
when he get down to zero, they can do blood work to measure levels of circulating cortisol. this will be the stuff produced by his glands
Posted 10/2/2016 7:59 PM (GMT 0)
Ah ok so a blood test determines if the adrenal glands are functioning. I was reading somewhere that once you get below 7.5mg your adrenal gland slowly starts to kick in as this is the amount that is naturally produced by your body.

We are going to try the alternating daily dosages. At the moment he will stay on 5mg until he sees his doctor on Friday.
Posted 10/11/2016 10:53 AM (GMT 0)
Clarabella - I was on steroids for 8 years and I know only too well about this situation.

Once you get below 10mg of Pred, I would ask your Dr to switch him to hydrocortisone equivalent in dose. It has a much shorter half life than Pred and will make his adrenals wake up quicker.

Then come down by 5mg of Hydrocortisone every few weeks. In other words, SUPER slow.

I had a synachten (sp?) test which indicated my adrenals were no longer working properly which is why I had to go onto such a slow taper. I was put under the additional care of a endocrinologist who specialises in this area.

Also, had to carry emergency hydrocortsisone injections around with me. Only for a couple of months or so, I think.

I wish him the best of luck
Posted 10/11/2016 4:13 PM (GMT 0)
There are special diets for Adrenal fatigue, I would look in to that!
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