Should I continue to taper?

[Reader7]

I was diagnosed in June of 2018 and put on 30mg of prednisone. I have now tapered to 6mg though it took many months to get below 8mg tapering 1/2mg at a time. Currently I am very stiff and sore in the morning...I take arthritis strength Tylenol which helps some. My question is should I continue to taper 1/2mg at a time...is the stiffness and soreness part of the condition and I just have deal with it?

Thanks for all your help! I don't think I could have managed this far without your wise advise.

[Mary63]

Is the stiffness worse than it was on your highest dose of pred? If so you have gone too low for you at present. What is the last dose when you felt same as on highest dose? You may need to go back to that dose. Or even up a few more mg (10mg) for a few days, and then back to the last dose you felt good at. Good luck and I hope you feel better soon.

[piglette]

I have learnt from bitter experience if you have stiffness problems etc STOP reducing, things will not improve with time, it will just get worse. Ideally even increase the dose for a while.

[DorsetLady PMRGCAuk volunteer]

Short answer - no.

Longer answer - sometimes around the level you are at (and above) the arthritis pains can resurface, so it’s difficult to tell what’s what! If other painkillers help then it probably a bit of both.

Getting to 6mg in just over a year is quite quick and I repeat what I’ve just said to Wayfair - sure she won’t mind -

“ You will have been able to reduce reasonably quickly because you’ve had plenty of excess Pred in your system - now you are at the physiological level of cortisol that your body produces naturally - it’s not so easy. You need to slow down to allow your own body to supplement the artificial cortisol that Pred gives you.

I would suggest you go to at 10mg for a week, maybe more to stabilise your illness again, you should probably be able to drop back down to 8mg or 7.5mg in one step, but then reduce much more slowly - 0.5mg per month/1mg every 2 months - same thing (as you are) . And use a slow tapering plan - see first PINNED POST on right.

[SheffieldJane]

I wouldn’t. Give your body time to settle. Ideally we aim to feel as good as we did when the treatment started. It has only been just over a year. I am at 4 mgs after 3 and a half years. I got stuck at 7 mgs for a year. Good luck!

[Christophene]

Stiffness and soreness is part of the disease. If you feel more or less comfortable, stay with the dose you're on; keep in mind Prednisone is not curing anything; the disease is still active. While it is said this disease eventually burns itself out, I would not know yet.

My maternal grandmother had it at age 72. Even though either of my parents, could have easily taken her to the emergency room, she took the bus that passed in front of her apt. complex. She walked into the ER herself. She was lucky to get an ER doc who recognized the symptoms and told her it was a good thing she came in b/c of risk of blindness. He must also have had GCA in mind as well as PMR. He prescribed Prednisone and referred her to either her GP, or a rheumatologist. She did overcome it, and lived independently until 90. After that, she started to decline and passed away peacefully at 92.

So there is life after PMR. As to your own case, only you can make the decision; I guess you could try tapering a little more, with the comfort of knowing you can raise your dose. I tapered from 16 to 4mg. But was absolutely miserable at 4mg.

It was only until I went back up to 8mg that I began to feel well enough to start physiotherapy. I go 2-3x a week. I had exercised many years so much of what they are having me do, is familiar. But I cannot go up and down stairs normally; I have to take one baby step at a time with both feet on step. So increasing my dose gave me the motivation and sense of well being I needed to get myself into a form of exercise again. So tapering depends on how you feel,; Unless you feel well and almost normal, I would not. I am stiff and sore in the morning too and will not make an appointment or meet a friend until noon or later. I get up early,but need the morning to loosen up and take my time in the morning.

You have to make that decision. Good luck with whatever you decide to do. I stayed at 4mg out of stubbornness. Hard work getting down this far and not going back up- stupid of me. I feel like I have a life again at 8mg.

[Reader7 in reply to Christophene]

Thanks for your reply...it was very helpful! I also exercised for many years...now I try to get in as much walking as I can. I think I'll hold at 6mg for awhile to see if my symptoms calm down before I even think about reducing again. Thanks again for your thoughtful reply!

[Christophene-Returns in reply to Reader7]

Let us know how you are doing. Good luck!

[Reader7 in reply to Christophene-Returns]

Thanks!

[Noosat]

How active are you? I started on three days of 40mg last December, then to 20mg. No advice on tapering from GP. Through looking at knowledgeable comments on this site I have tapered to 4.5 for the last week, and intend to stay there for another 3 before I try going lower. In the mornings I am extremely stiff, feeling that I cannot possibly be very active. However, after making myself move around I do feel better. This morning I took my dog, Lily, to the park and walked for almost 50 minutes. We were there for that length of time but I sat for a few minutes. I walk very slowly, but took 4500 steps according to the pedometer on my sock. At the end I'm exhausted, but do actually feel better when I arrive home. I try very hard to make myself be as active as I can, even just walking in the house. I don't think one should try any kind of exercise, if it promotes pain. I hope you are having a better day.

[Reader7 in reply to Noosat]

Thanks, Noosat...that's exactly how I feel, stiff and sore in the morning then better as the day goes on. My goal everyday is to briskly walk for an hour, though not all at once...usually 10 minute increments.

[Christophene-Returns in reply to Noosat]

You are right; don't do any exercise that is painful; never push through pain. But if there are exercises you can do, do them. PMR de-conditions us. When you feel well enough, reconsider.

Walking is good; I walk slowly too. I still do alot of housework; I do pay a man to care for the exterior, but interior is mine to do.

Exercise only without significant pain. I wake up early, but due to morning pain and stiffness, , I need 2+ hours to get myself up and moving. The worst thing , though, is using the illness as an excuse for becoming a couch potato. That is not worth it.

PS It is also great for mental health; gets you out of the house and in a social setting. That's very importsnt, not to isolate ourselves; that leads to depression and noone wants to go there.

[Noosat]

You are doing so well! Keep it up. I do not believe in "no pain, no gain", but I think we can help ourselves by putting up with discomfit for an end goal. And that "discomfit" is different for all of us. I set myself small goals, but if I cannot meet said goal, I am not a "bad person" I'll just start over again. Also I find that it helps me to have something to look forward to, kind of make activity like a game. On my walk by the river there is a hill that I have been attempting, and now can trudge to the top, where I stand, look out and think what a wonderful view.

[Christophene-Returns in reply to Noosat]

Great positive attitude! Good work...

[Christophene-Returns]

As you describe it, I would wait. I am on 8 too, having gotten down to 4. I felt like I wanted to just die; that's how bad it was. 4 mg up to 8 did the trick. I have an active life again and able to have fun. Tapering a certain. amount forced by your doctor is the worst thing. It should be in your own hands. Only you knows your body.