Withdrawal from Prednisone

[TowneleyDownTanner]

Can anyone say if taking Prednisone for 9 years is safe. Came off them slowly but have not been helped by doctors. Withdrawal symptoms muscle pains in legs and arms and total fatigue from walking, say, 10,000 steps daily to walking around block.

[DorsetLady PMRGCAuk volunteer]

Would say the fatigue is just as likely to be adrenals struggling. Have you had them tested to see what condition they are in? Maybe have a look at this -

healthunlocked.com/pmrgcauk...

Do the arm and legs feel like PMR pains? and how did you reduce to zero in the last stages?

If too quickly you may find that your PMR is still there and just a very small dose may be required.

There’s nothing much in your bio, so a bit more info might help us give you better advice.

[Janet57]

I’ve been taking prednisolone since 2013. A few ups and downs with flares but now I am at 3mg. The rheumatologist said I might need to remain at this or a slightly lower level. I am using the DSNS method and it works for me. I recently remained at this level as I’ve just had full knee replacement surgery. It was fine and I’m recovering well. I’ll start reducing again at about 12 weeks post surgery when the biggest part of the healing is done, but if I don’t feel up to it I’ll remain at 3mg. It’s not a relentless race to zero. It’s whatever you need to manage the inflammation that PMR causes. You ask if it’s safe ? I don’t know but I’ve had a pretty good life since 2013, despite PMR and long may it continue. I wish you all the best.

[PMRpro Ambassador]

Since I have been taking pred for 15 years with no apparent serious effects, I do hope so! Especially since the chances of ever getting off it do look slim. At least 10 of those years were at above 10mg, I have never got under 4mg and am currently at 7mg even though I am on Actemra as a steroid-sparer. If I try 6mg, both the tendinitis of PMR and the wobble of adrenal insufficiency make life unpleasant.

There is one form of PMR that lasts a long time - and to be honest, I don't think you are just experiencing "steroid withdrawal" which is your body adjusting to the change in dose and fades, but you still need a low dose of pred to manage ongoing PMR inflammation as I do. I also get muscle and tendon pains in arms and legs at a dose that is too low for me. And no way I could have done the magic 10,000 steps (which is rubbish, the health benefits start with any exercise and peak at about 4,000). the 10K was a marketing tool and probably causes more problems than benefit for many who are demoralised at not being able to do that much and give up altogether.

Like Janet57, pred has given me 15 years of fairly decent QOL - not complaining and not intending stopping.

[Rotsky in reply to PMRpro]

Thank you for the info on the 10k. Yes, always felt demoralised, even when in better form. These days that 10k is just an illusion. I too get leg cramps, same leg, on 25 pred. Your comments, as well as Dorset Lady, so informative. Thank you again.

[PMRpro Ambassador in reply to Rotsky]

I do use the steps on my phone in an attempt to get to the 3.5 to 4K that has been shown to help. But if I can't do more - I don't care! I did what I could without having pay-back.