Off Daily Pred , So is it Flareups or arthritis?

[Crowmaven]

When I was diagnosed with PMR January of 2021, my rheumatologist put me on 15 mg of pred and tapering by 1 or 2 mg monthly. I have been off pred since the middle of January and feel basically ok. I do get occasional flareups (I think) which I control with a 5,4,3,2,1 mg dosage over 5 days and that takes care of it. I do have a mild, low grade pain in my shoulders, back and hips-but nothing like the pain and weakness I experienced while suffering undiagnosed PMR. My inflammation markers are normal, so I’m thinking it’s arthritis. I noticed when I am inactive is when I experience flares. When active, the night of the activity is pretty brutal but then afterwards, I’m fine. I’m resigned to the fact that the achiness is age related, and am so glad I’m not on daily pred-which for me was brutal!

It seems like most of the posters with PMR on this site have been on pred much longer and at higher doses…anyone out there experience what I did, with lower dosage and shorter duration? I want to have hope that I am cured/in remission.

[Shytot]

Good morning my experience seems to mirror yours 15 mgs tapered over 10 months to zero. Currently 12 months pred free. However I am not pain free levels is aches vary. When I first reached zero I used 200 mgs as required of ibuprofen this works well intially I would have 600 mgs a week currently I use it rarely I excercise relentlessly golf 3/4 rounds a week and gardening on none golf days. I have to have one and sometimes two days of inactivity when I do absolutely nothing but sleep and lie still. Over the 12 months I have gradually improved over doing it results in stiffness and fatigue. I am advised by my friend a PMR specialist clinician and researcher that I can expect to be another year like this. She predicts I will be as near normal as I will ever be by then. I have a friend's wife who followed this route a year before me and she is now totally symptom free. It seems we are in a minority and should be grateful. The other thing to remember is many people have PMR and recover who don't use this site. It could be argued that the site is not representative of PMR sufferes worldwide? I guess we will never know. I wish you well good luck

[agingfeminist in reply to Shytot]

There is oft quoted research data that shows that people go into remission on average at around 6 years. So we know those who recover within a year are a minority.It often seems that there are slightly different diseases.

I had a very dramatic onset...and over 3 days became virtually paralysed for the first hour of the day and unable to move properly all day...not able to step onto a kerb if I crossed a road.

Well controlled by pred...but 2 and a half years later cannot imagine ever returning to the sort of fitness i had before...walking 200 meters is about my limit.

I do hope that you never see a twinge of this disease ever again.