Tapering off prednisolone after using for 4 years

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clarabella
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Tapering off prednisolone after using for 4 years

Post by clarabella »

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 :D

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 (29 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,



Karencraig
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Re: Tapering off <a href=

Post by Karencraig »

It may just be the effects of being ill for so long, rather than the steroids. I was on constant steroids for 3 years prior surgery. I was very stiff and immobile at first. A walk to the corner shop was an adventure. Don't forget he's not recovering just from the surgery, but from being so ill for so long. Steroids give a feeling of wellbeing, so the withdrawal may actually be he's feeling the real pain!
I started off with little walks just to get my strength and energy back. I also went back to my yoga class, where the tutors aim was get me from a sitting to standing position during the class!!
But if in any doubt, speak to your husbands specialist.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

clarabella
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Re: Tapering off prednisolone after using for 4 years

Post by clarabella »

Thanks Karen, you always help and make me feel better :D ! I didn't actually think about it that way.

So I'm guessing you found it difficult to go down on the steroids as well. How long did it take you to get off them?

My husband is quite impatient and thought he would be off them by now. Over the last 3 and 1/2 months he has gone down from 20mg to 5mg. When he went under 10mg that's when the withdrawals started getting bad. From then he has gone down by 1mg and stabilises each time before a drop.



Karencraig
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Re: Tapering off <a href=

Post by Karencraig »

I was ok coming off them. But I was stiff and sore for a good few months. I put that down to having been immobile for so long. Just remember, he may feel well, but it takes time to recover from the illness. Slow and steady.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

clarabella
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Re: Tapering off <a href=

Post by clarabella »

Very true. He needs to remember that it will take ime to heal, as do I. It's only be 3 and 1/2 months.



Karencraig
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Re: Tapering off <a href=

Post by Karencraig »

Actually, has he had a blood test to check his vitamin/mineral levels. He may have a deficiency in one or more. I'm on calcium and Vitamin D for bones.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

rogalin47
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Re: Tapering off <a href=

Post by rogalin47 »

I would advise he gets his vitamin B12 levels checked too. B12 deficiency is very common in those with ileostomies and can produce a myriad of symptoms from exhaustion to a foggy head to general aches and pains


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

clarabella
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Re: Tapering off <a href=

Post by clarabella »

Ok, I didn't think of his mineral/vitamin level. We'll get his B12 levels checked.



Karencraig
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Re: Tapering off <a href=

Post by Karencraig »

See if they can check for a range - just to cover all bases!


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

clarabella
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Re: Tapering off <a href=

Post by clarabella »

Yeah will do. Thanks for thte advice as always.



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