Been on the site almost 2 months and this is my first post. Was diagnosed Feb 8 after months of symptoms. My symptoms came on gradually and became acute in Jan. Got Covid before I could make it to the Dr, that was fun. Started at 20 mg prednisone and symptoms were mostly gone in 72 hrs. Reduced to 15 mg on March 8. Started feeling the early symptoms come back about a week ago. Pain and tightness in both thighs, left bicep and shoulder and both wrists.
My question is do flares come on gradually or all at once? Could I even get a flare at that reduction?
If you dropped down 5 mgs you may find that it was too steep a drop and inflammation is building again. As a rule of thumb it is a bad idea to reduce by more that 10%. There is good guidance on tapering programmes in FAQs at the right of your screen on this site. It is on the right of my iPad screen anyway. I would be inclined to go back up to 17.5 mgs at least. Get a pill cutter and ask for multiples of I mg and 2.5 mgs to help with your journey down. Too fast and steep and you find yourself back at the beginning again. Welcome to the site, it is a friendly helpful place with lots of experience and knowledge being shared.
I was told to drop from 20mg to 15mg about three weeks after I was diagnosed. It was a total disaster in my case. I just could not take such a large drop. The rule of thumb is don't drop more than 10% and our drop is 25%.
Morning firemob. Welcome to the forum and when you have a moment of two a read of the information in FAQ's about PMR in general and also on tapering your dose is very worthwhile. A drop of 5mg after a month is pretty hefty and I would be tempted to go back to your initial dose of 20mg for a week to get everything under control again and then reduce in no more than 10% at a time. This is, of course, only my personal thoughts and in no way replaces what your doctor says you have to do. All the information you read here, though, does give you the ability to
have an informed discussion with your doctor when/if needed.
And although yours took longer than might be expected it’s probably because at 20mg there was more than enough Pred to control your symptoms…..and therefore when you reduced to 15mg (which is usual starting dose) it seemed enough initially but did allow the inflammation to build up again. Bit like your original scenario.
I echo all the others have said but I also have to ask this:
Have you increased your activity level because you felt better? You do have to change lifestyle and activity as well as taking the pred - it has cured nothing, it is a management strategy to allow a better quality of life in the meantime until the underlying cause of the PMR burns out and goes into remission.
Thanks for your responses everyone it is appreciated.Yes activity level is the same as before I had symptoms. I play golf 3 days a week, walk the dogs and do stuff around the house. Would that activity bring on PMR symptoms or just fatigue? It’s Not to strenuous but I am 72.
Morning Mike, although I guess that should be evening really. If you are still doing the same activities as before the disease then I suspect that is going to be part of the problem. You have a long term systemic disease, which isn't cured by the Pred, taking the Pred will, hopefully, make you feel better but you aren't cured, it is only controlling the disease which is still rumbling away. It will need a change in lifestyle and a lot of rest. Acceptance of this is often difficult and looking at your symptoms you may well need to seriously think about giving the golf a miss for a while and resting more. Good luck in this journey, you have found the right site and there is lots of very relevant information in the FAQ's section.
More than likely too much activity for your illness to deal with at the moment.
Yes you do need to keep active, but 3 rounds of golf a week plus dog walking every day is just too much for now.
Your muscles aren’t as resilient on Pred, they take longer to recover, and overuse will cause issues.
I’m not say you should stop playing golf, walking the dog or working around the house, but probably need to pace yourself better. That’s easier with the dog walking and the house - you can take breaks and/or work for shorter periods.
Bit more difficult with golf, unless you use a buggy (you may do already) and perhaps twice a week for a while so you have more time between games or recovery. Even once for a few weeks if it’s really wiping you out, or if it’s feasible maybe only 9 holes instead in 18. Won’t be forever, you can build it back up. Just calls for a bit of rethinking.
I agree with Bcol and DL - while you may not have increased your activity you are very probably trying to do more than is feasible for you at this stage of your PMR. The pred has cured nothing - it is managing the inflammation and that in itself removes a lot of the symptoms. However, the autoimmune disorder is still chugging along in the background and attacking various body tissues. It is a parallel with flu or other viral infection - if you had even a bad cold would you be surprised that that level of activity was too much?
This is a chronic condition and you have a new normal to adjust to. It sucks - but you will find your way around and life will improve and get back to nearer your former normal. But overdoing things will not help, you can't "battle through" the effects of PMR. That is just counter-productive. It is all about pacing and lifestyle adjustments:
I’ll take the advice given by you ladies. I’ll reduce the number of times I play golf each week and shorten the distance I walk the dogs. I’ll ask my dr to up me to 20 mg for a few weeks and then taper at a slower pace. Thank you for your help, you ladies provide a real service everyone. I’ll let you know how it goes.
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