Steroid withdrawal symptons - ITP Support Assoc...

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Steroid withdrawal symptons

Maewest profile image
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Maewest profile image
Maewest
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11 Replies
Maewest profile image
Maewest

One member asked if anyone else has suffered aching leg joints after coming off steroids - the answer is yes I have. I was on them for only a week and never had problems with my legs before taking this steroid. They started about 9 days after coming off them.

mags4743 profile image
mags4743

Definately!! I was on prednisolone for more than 3 months and I had terrible aching legs. At the time I didn't put this down to steroids and I actually went to A & E!!

It does eventually go away.

Maewest profile image
Maewest

Did you have the aching legs whilst or after finishing the steroids please? Tks for answering - nice to know that I'm not alone in this!

mags4743 profile image
mags4743 in reply to Maewest

The aching legs came after I had come off steroids.

LucyD profile image
LucyD

My legs were really bad on 40-60mg/day, not so bad as doses lowering. Am now on 5mg/day so have bad legs to look forwards to in a few weeks time, thanks for letting me know! Oh joy!

On the plus side, at least I have legs to ache! <grin>

Maewest profile image
Maewest

Hi Lucy - love your sense of humour! But my legs didn't start hurting until 9 days after coming off them - I didn't have any problems whilst I was on them for the 7 days I took 6 tablets a day - no tapering at all - after 7 days they just stopped on dr instructions. I certainly was never warned of any problems after coming off them - it did frighten me until I saw a question on a steroid site which asked "has anyone else suffered aching legs as withdrawal symptom?" Take care.

kingharold11 profile image
kingharold11 in reply to Maewest

I have been on prednisolone for nearly two years for polymyalgia gradually reducing the dose. I am finally due to finish at the end of March this year. I tried last week to go without them being as how I am supposed to stop taking them altogether in about 3 weeks. However for the last two months I have had aching legs, shoulders etc and for the three days I didn't take steroids the pain increased. How do you get off the darn things?

AnthonyHeard profile image
AnthonyHeardAdministratorITP Support Association

I had terrible aching legs and joints and quite bad headaches for quite some time after coming off the steroids. I had been on Prednisolone on and off four times over a 4 year period. Basically I was on them for 6 months then off them for 6 months over that time. Eventually in August 2010 I had Rituximab which has thankfully given me remission ever soince and no other medication since Sept 2010. But the withdrawl from the steroid was not pleasant at all and of course it remains in our systems for upto 12 months.

LucyD profile image
LucyD

I was feeling cheerful about coming off steroids but now I'm not so sure!! I also didn't know steroids stay in your system for 12 months either.

Did steroids work for raising peoples' platelet levels and how long did the improvement last for?

I started on 0 platelets last October and was up to 300 within about 4-6 weeks and have been fairly stable around 300 since as the steroids have been tapered. I should be off them either this week or after 2 more weeks (fingers crossed if my count is still good). How likely is my count to start falling once I stop the steroids and over what time period? I know everyone will be different, but I am interested to see what others have experienced.

Sorry for hi-jacking your thread Maewest, bounce me if you like!

Maewest profile image
Maewest in reply to LucyD

Hi Lucy, no problem - as I said I was only on them for 7days - but my aches and pains didn't come on for 9days afterwards. Luckily they only lasted a few days and then disappeared and I am hopefully back on my 'normal' feet again and I am keeping my fingers crossed. The reason I was extra worried was because even at 70 I have never suffered from any joint pain illnesses and thought I would look on the net -and this is where I found a question from somebody, I think it was a gent, who asked if anyone else has developed aching legs etc. after coming off steroids -and you know the rest. All the best and take care - I am now leaving the site. Regards to you.

kingharold11 profile image
kingharold11

I have been on prednisolone for 1 year 9 months and am due to stop at the end of March 2013. Since tapering the dose ( as the doctors have told me) I have experienced pain in my arm and leg muscles. I have read that this happens but how long for?

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