Stopped taking Pred after three years but I'm stiff

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Hi all

I've been taking Prednisolone for Polymyalgia for three years now but got down to 1-2mg. I stopped completely about one week ago, but when I stand up after sitting for a while I'm stiff, it takes me a few steps to get upright and moving properly. It doesn't feel like Polymyalgia, just circulation, stiffness. I'm 54 and pretty fit, so I don't believe it's just old age related.

Do you know if this stiffness will go away? Any idea what's causing it? Is it still Polymyalgia?

Thanks in advance

Sharron

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  • Posted

    Yes - I have to same problem having stopped Pred.....I feel like an old croc trying to get up and start moving but it is not just my legs, it's arms and shoulders too...worse pain than I had when PMR started! Just wondered if it was a withdrawal from Pred or PMR back with a vengeance...so I too would be happy for a reply...thanks x

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  • Posted

    I'm having my 3 rd relapse - was doing 20mg for week, 15 for week , then had shortness of breath, went to ER, cardiogram, chest xray, blood work, all OK side effect to pred. so doc has me down to 4mg. Hopefully stiffness won't come back. Pred. is very powerfull and if you've been on it for 3yrs, try to get off it, bad stuff long term. I bought a roller for my back and legs and do it every morning, REALLY helped, only takes a few min. Good luck. PMR is very frustrating, also going to do acpuncture and Hemp oil

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  • Posted

    Hi, I reduced right down to 3mg but then the aches and pains came back in my legs and shoulders! I had mybloods checked and it was a flare up! Iwent back uo to 10mg but have slowly reduced to 5mg. Im pain free at the minute but in no rush to reduce further . Slowly wins the race x

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  • Posted

    Hi Sharon, I had similar mild stiffness (emphasis on mild) after sitting for a while when I stopped pred as well. My CRP was at the edge so I waited it out and after about two months it totally faded away.

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  • Posted

    I have been on prednisone for 6 years. I got off of it in July, so a month yesterday. I realized I had been taking it basically for my left hip. I've had xrays, MRI with contrast etc. I'm praying it is not necrosis and a labrum issue. I find out this Monday. I've had numerous issues since getting off prednisone. So worried I've requested bloodwork. I prayed the PMR was gone, but just not sure. My nights are horrible. Shoulder and arm pain, plus my hands are stiff in the morning. Massages have been a blessing to me. My hip issue nearly had me in a wheelchair in May. Its been a long hard summer. No cycling, swimming or long walks. All affect my hips. I've been very active on pred. This has taken its toll. I'm miserable, is it the return of PMR or withdrawl??? Guess I find out after bloodwork results.

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  • Posted

    I think it is about 6 weeks since I came off Pred, possibly a bit longer as I didn't take too much note because I wasn't sure if it would last. I had similar problems and it is only this week that I can say the pains are now easing.The neck pain was the worst. I think it has been withdrawal but I did have some misgivings and considered taking Pred again. I am glad I stuck it out as it has proved to be worthwhile. I cannot speak for others but perhaps it may give you some idea of how it can be for a short time after stopping.

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  • Posted

    That is exactly how my PMR first presented itself and one of the ways I identify an impending flare.

    How did you taper off that last 1 mg? Maybe, silly as it sounds, you still need a half mg or so, and eventually that tiny dose every second day, and so forth? As Silver49 suggests it may only be a question of withdrawal, not actual disease activity. Wait it out. If it stays the same or gets better, then it likely isn't PMR. If it starts to get worse, time to rethink.

    Good Luck!

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  • Posted

    Did you go from 1-2mg to zero just like that? It is better to keep reducing slowly even over the last 1mg - dropping to 1/2mg if you can cut the tabs or taking a dose every second, then every third, fourth , fifth day as time goes on. It may sound silly - but it works!!!

    It may be your body protesting you took its expected fix away - or it may be there is still some disease activity present which will build up over time. Just because you are fine at 1mg doesn't mean you will be fine at zero!!

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    • Posted

      I agree with EileenH - I am currently working off a flare - I have had PMR for years, and tapered down to 1 mg daily using the DSNS method - tried to go to 0 and bang - blood markers jumped up from 4 to 22 - so, I am now taking 10mg per day and preparing to start the slow taper again.

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    • Posted

      You can almost certainly drop to 5mg at least much faster - depending how long you stay at 10mg. 5mg should have been tried first.

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    • Posted

      Susan, I had too many flares in the last 2 year, I just forget the first disastrous first year. Since then the is the procedure that has worked for me: double my dose for 3 or 4 days, not PMR pain free, triple the dose for 3 or 4 days, not PMR pain free, quadruple the dose. Reverse the procedure the get back to original dose. I never reduce my dosage if I have any PMR pain. Oh I stabilize on orginal dosage before starting my taper again. Good luck hope the rest of your journey is smooth. 🙂

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    • Posted

      Thank you so much - I wondered about the size of the dose - my doctor wanted me to go to 15 but I thought that was too high - thanks for letting me know I can jump to 5 mg quicker.

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    • Posted

      Thanks for the help. This was the only flare I have had in the 4 years I have been diagnosed. I will definitely save this information for the future if I should have another.

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    • Posted

      You are welcome Susan, glad to be of help. You are lucky only one flare in 4 years. In my first year I had 2, the second one I went from 7 mg to 30 mg to get any relief, it was while I was on 30 mg that I found the forum and I have mostly PMR pain free since, except for the flares. Good luck on the rest of your PMR journey. 🙂

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