Connect
Today is first day of 0 prednisone (but on kevzara)
Being on kevzara has helped, but I'm certainly not pain free. Shoulder / neck muscles still stiff and Achy, but I will refuse to go back on prednisone. I guess we all have to figure out what level is acceptable to live with. I know I still need to go through 3 weeks to a month of withdrawl from this last decrease. But I am determined to make it through. Getting older adds to the aches and pains but staying on even a low dose of prednisone just isn't acceptable. 8 years is a long enough time to let it ravage my body, it's time to at least try to recover some muscle tone. Wish me luck in the battle against this monster of a disease!
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
Wishing you the best! Keep us posted on how you do as I have tapered off 3 times now and can't shake the arm, shoulder and neck pain that comes with PMR. I have had PMR for just over 10 months now.
@bkearbey1 3 times in 10 months, that seems very fast. I guess it depends on how high you started. My original start was at 60. My first taper took forever. 2 years , then a flare to 40.. rinse and repeat. Everyone's trip down this path is different.
Don’t rush the tapper……it will only make you frustrated, anxious and cranky.
Stay at a dose until pain free for 2-3 weeks.
Also Tylenol for Arthritis can supplement the prednisone while working to be pain free
-
Like -
Helpful -
Hug
2 ReactionsPersonally, I don't think I've been without some type of ache or pain since going below 30 mg, 8 years ago. I do think that everyone has that question at some point. Are you suppose to be pain free before the next taper.... some do, some don't. If your lucky you are one of the ones that go pain free.
Same goes for kevzara, some people it works like magic, others it doesn't do anything. I happen to be one of the ones it kinda helps, like 80 %. But I'll take that, just to get off prednisone.
-
Like -
Helpful -
Hug
4 Reactions@ronludington My PMR started in August of last year and was diagnosed by my primary Doctor on 12/04/2025. I went thru 8 weeks of muscle pain in my arms, shoulder, neck and even my left knee was in so much pain my walking was a challenge. I went to ER and they gave me shots of antibiotics in each arm and sent me home and I also saw 5 different doctors... In late October one of the doctors gave me 6 day prescription of prednisone and I immediately was finally able to sleep. So my primary doctors office started prescribing 10mg of prednisone until I was able to see the specialist at The Iowa Arthritis Center in the Des Moines area on 02/04/2026. So when I finally saw specialists he was unhappy my doctors office did not reach out sooner to get me in. He then put me on 20mg for 7 days and tapered every 7 days until done so 20mg to 15mg to 10mg then 7.5, 5mg and off prednisone in 5 weeks. Flared up 3 weeks later on prednisone again for 3 weeks off again and then on again for another 3 weeks and now have been off for 9 days and have some small pain but manageable. I am a 62 yr old male and was running 3 miles 4x per week until last August. I am now walking at an incline to get exercise. I am mostly Northern European which seems to be the majority of people with this decease/muscle disorder... or whatever you want to call this nightmare. I am almost 11 months into this and I guess specialist thinks I am super human I guess. Sorry if some of this is not making sense but I am sure you get the gest of this. Again I wish you the best! Bill
-
Like -
Helpful -
Hug
2 Reactions@bkearbey1
"He then put me on 20mg for 7 days and tapered every 7 days until done so 20mg to 15mg to 10mg then 7.5, 5mg and off prednisone in 5 weeks. Flared up 3 weeks later on prednisone again for 3 weeks off again and then on again for another 3 weeks and now have been off for 9 days and have some small pain but manageable."
--------------------------
This isn't a standard Prednisone taper for PMR. I'm not too surprised by the relapses. Are you saying you have been in remission for 9 days while on no prednisone?
Why were you given antibiotics in the ER initially? That suggests they thought you might have reactive arthritis.
https://my.clevelandclinic.org/health/diseases/reactive-arthritis-reiters-syndrome
-------------------------
I remember when I had to stop and rest when walking up a slight incline about a year after I was diagnosed with PMR. Prior to being diagnosed with PMR, I could easily run 2-3 miles 4 days a week. I preferred a 30 mile long bicycle ride. I was 52 when I was diagnosed with PMR and I'm now 72. I'm still being treated for PMR. You might need treatment for a lot longer than your doctors think.
I'm in Iowa City. You might want to be referred to the University of Iowa if you relapse again. There is probably a long wait list but maybe sometime this year or early next year.
-
Like -
Helpful -
Hug
1 Reaction@dadcue it's horrible what this does to your muscles, I'm hoping to build some back now that I'm at 0 mg..... (day 2, so far so good, but a long way to go before I claim remission)
-
Like -
Helpful -
Hug
2 Reactions@bkearbey1 I am 78 year old female of Northern Europe roots. My older brother has had PMR for about 15 years ( a few years of remittance in between). His medical history aided in my early diagnosis in December, 2025. I had arm and finger pain which started in November and was so painful I could only sleep sitting up.
I started on 15 mg prednisone and now at 5 mg. Noticing the return of the finger pain. But I may also have carpal tunnel plus the PMR. Also temporal lobe epilepsy which started in early 2025 ( but an earlier history of epilepsy).
@dadcue At the ER they new I had bursitis in my right elbow around the 1st of August. After a few days I had like 7 mosquito bites in a 10 second span while weed eating. Soon after I ended up with PMR. I then found out 01/31/2026 that my grandpa and his sister both had PMR in the 1980's. In February when I saw the specialists he started me on a lower dose since I had been on 10 mg of prednisone for more than 3 months. So far every time I go on and taper off I have nothing that causes me unmanageable pain for usually 2-3 weeks. I am definitely following my Rheumatologist plan. Back in August, September and October I felt like being dead would be a better option than the pain I was dealing with. Just feel grateful that I have the option to go on prednisone if needed and a low dose of 10mg gives me 100% relief until a couple weeks after tapering off. So far absolutely no side effects to the prednisone. I have read a lot of these post and I feel fortunate to be where I am at. Bill
I have shoulder and neck pain that is either arthritis, SMM or both because it didn't totally go away on 25 mg prednisone for PMR and I have a pre-existing cervical spine issue. See if LDN is an option. I'm using that in my prednisone tapering while I wait to go on kevzara for the PMR.