Stopped taking Pred after three years but I'm stiff

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

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

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

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.

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.

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.

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!

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!!