O.K. I haven’t posted for a long time. I thought I was on my way to getting off pred, but there may be a fly n the ointment
Been on pred since May 2017. After a very slow taper, I am down to 2.5 mg pred. Now experiencing unilateral pain in left shoulder, especially in the morning, and slight discomfort in the right. Also feeling a little neck stiffness.
Is this PMR returning, or just withdrawal symptoms?
Any opinion would be appreciated.
If it is steroid withdrawal the pain will start fairly quickly and also go away pretty soon. If it is the PMR raising its ugly head the pain does not start for a few days after reducing and stays!!
Wait a bit and don’t reduce any more for now- try Paracetamol -I am similar to you on 3 mg and had some shoulder pain,neck and back stiffness and was tempted to go up but decided not to-stayed on 3 mg and now it’s easing-the damp weather seems to make it all worse
Thanks, Piglet. I’m sure you’re right. The difference is so subtle that I’m having a hard time making a distinction between the two effects.
Any suggestion as to what I should do? Increase the pred and see what happens, or do nothing and continue watching things?
As already advised, withdrawal usually doesn’t last more than 3-4 days and comes on first day of new dose...and can be helped with OTC painkillers.
However if it last longer than 5 days and is not helped by painkillers you have to assume it’s too low a dose.
If the latter, a few days (5-7) at 5mg should help, if that solves the issue then you can drop back down to 3mg - stay there for a month just to make sure before you consider tapering again.
Thank you DL you have just answered the question I was about to post. I have been doing the slow taper from 3 to 2.5mg but finger and hand pain radiating up to the elbow was too persistent so jumped up 5mg to 8 and wasn’t sure how long I could stay before coming back down to 3mg. I don’t want to stay too long (although the instant relief was wonderful), but want it to be long enough to be effective. It’s been four days now so maybe a couple more. Just enjoying the pain free and extra energising effects that came with the increase. Many thanks Marea 🌻
Let’s hope so....maybe back down to 3.5mg rather than 3mg just to make sure before you try tapering again.
Had you been overusing your hands in general or doing something unusual with the affected hand? I had that sort of pain with PMR originally and associated it with RSI (repetitive strain injury, typing a lot) but it did go once I was on pred.
No I haven’t that I can recall. I didn’t have hand problems with the original symptoms but did twice when I was trying to go from 10mg to 9. That was when I changed to a 0.5 taper. This felt like a very similar pain and I persevered with it for a while, but didn’t want to wait too long and end up back where I started. However, feeling good today and did some digging up weeds that have taken over the garden so.....watch this space.
I see you are at 2.5. Just a little heads up - I heard for years that many people stay at a very low dose basically indefinitely. Even my GP told me that right at the beginning. I'm beginning to think I may be one of those people. I've been on pred since June 2015 and had a very uneventful taper down to 2, but have pretty much stuck there, with some good periods of time somewhat lower, since then.
Through part of 2019 and last year I tapered very slowly from 2 to zero after about 4.5 years on pred. I was okay. I think I was "just" okay, but definitely okay. I have osteoarthritis as well and pains I had were always sorted by minimal use of aspirin, or even acetaminophen which usually does nothing for me so I felt pretty secure in reducing to zero, this final stage taking an entire year. After three weeks at zero I quite suddenly realized that the pain and discomfort I'd been feeling for a few days was awfully PMR-like. I think I stuck it out for a little longer and it gradually got worse. Eventually I gave up and took a reasonable dose of pred, 5 mg if I remember, dropped very quickly back to 2, and with various forays up to 3 and efforts to get to 1 have been around 2, as I had been for years, ever since. About six months now. Hoping once my bad knee is better (it's getting there, fingers crossed) that inflammation markers come down and I can get back to 1 mg, but even 2 will do if need be.
I honest.y think that the winter is playing havoc with our plans. If I were fortunate enough to be on a dose lower than 5 mgs, I wouldn’t bother my body with more tapering until the snowdrops are out. Or even the daffodils.
Two points to always bear in mind: you are NEVER reducing relentlessly to zero. You are looking for the lowest dose that manages the symptoms as well as the starting dose did. A flare will start after a few days, even weeks, and then steadily worsen. Steroid withdrawal starts immediately and improves over the following week or two.
A dose of 2-3mg is low and has few risks, so that Prof Dasgupta says he often leaves patients on it indefinitely as it seems to reduce the risk of relapses.
Does PMR come back again?
Not sure if I have PMR and my preds are not working
Has Pmr come back?
Pred alternative for PMR
