Prednisone

I'm sorry that you have joined the PMR club. I started on 60 mg. of Prednisone in July 2024 for PMR and GCA. By the time my taper got me to 10 mg/day in November 2024, I was starting to have a flare again. I couldn't get below that doseage without increased pain. In January 2025, I began monthly Actemra infusions. They helped me taper off of Prednisone (November 2025), without any flares. Since, December 2025, I have been having bilateral pain in my knees, shoulders, and wrists. I have an appt. with my rheumatologist in May to discuss. In the meantime, I'm taking extended release Tylenol.

I urge you to tell (don't ask) your doctor, that you want to try a biologic. Actemra isn't approved for PMR, but some doctors do prescribe it. Most people go with Kevzara.

Good luck.

@ropnrose Also, please consider seeing a knee specialist. I have bilateral knee pain and was Dx with osteoarthritis. My knee ortho treats me with semi-annual hyaluronic acid. That is the gel you hear advertised on TV, it works great. I also have bilateral osteoarthritis in y shoulders per the x-rays and my shoulder ortho. They treat that with steroid injections and about once a year I private pay to get hyaluronic acid injections. The US is the only country in the world that has not approved hyaluronic acid for shoulders. That works for me also. You might consider a hand specialist to check out your wrists to see what is really going on. Rheumy do not investigate pains individually, you can.

My advise would be to demand that they eliminate asymptomatic GCA. I have a similar story and I kept telling my Rheumy that something else was going on and it was - it was Giant Cell Vasculitis. I could taper down but within a month the pain was back and it always seemed more severe than before. PMR normally runs it's course in say 3 years - and yours and mine did not. I never had a single cranial symptom that would lead a doctor to test for GCA. I had a PET Scan that showed it. I finally went out of state to a major medical facility that routinely sees difficult to diagnose patients to get some action.
Clearly you should be concerned that you do not have something else, possibly in addition to PMR, and whatever the other is could be doing silent damage. This is true with me and I am now dealing with some of the other problems due to untreated GCA. Remember PMR is a default dx, there is no test that can confirm or deny it. It is Dx simply by elimination and so ask them to eliminate GCA. If they are resistant, get a 2nd opinion.
Interestingly my Rheumy at home is not totally onboard with the diagnoses but is willing to treat as recommended by the out of state doctors. I don't know who is right I simply know that I feel more like pre-PMR days than I ever did while on prednisone alone. Getting a second opinion is not only your right it is appropriate when you think that you are not receiving the care you deserve. I had my first PMR symptoms April 2019, pre-Covid.

@jabrown0407 Hi. I’m Norwegian and it was a chiropractor that first mentioned PMR as a possible option for my symptoms. GCA was never mentioned as an additional diagnosis when I talked to several Norwegian doctors ( I now live in Spain) and that’s really a scary situation to have to face. I feel really sorry for those with PMR that has to struggle with this🥺🥺
I have lots of additional injuries because of a childhood accident and high level volleyball -that mainly caused lower back and shoulder problems. I had to have a big surgery in my back 16 years ago and also in both shoulders. In addition I have classic Ehler Danlos. So I’m never totally pain free. So that’s makes it even harder to reduce the prednisone dosage. I would like to know what the most common used DMARD medication is, for PMR- besides the first choice Metotrexate..

@jabrown0407 Hi. I’m Norwegian and it was a chiropractor that first mentioned PMR as a possible option for my symptoms. GCA was never mentioned as an additional diagnosis when I talked to several Norwegian doctors ( I now live in Spain) and that’s really a scary situation to have to face. I feel really sorry for those with PMR that has to struggle with this🥺🥺
I have lots of additional injuries because of a childhood accident and high level volleyball -that mainly caused lower back and shoulder problems. I had to have a big surgery in my back 16 years ago and also in both shoulders. In addition I have classic Ehler Danlos. So I’m never totally pain free. So that’s makes it even harder to reduce the prednisone dosage. I would like to know what the most common used DMARD medication is, for PMR- besides the first choice Metotrexate..

@inga71 So I asked my AI tool, MS Copilot "what are the DMARD medications used to treat PMR?" and this is what it told me.

Methotrexate, csDMARD, First‑line steroid‑sparing agent
Leflunomide, csDMARD, Possible alternative - limited data
Sarilumab, Biologic (IL‑6), FDA‑approved for refractory PMR
Tocilizumab, Biologic (IL‑6), Off‑label, strong evidence
JAK inhibitors, Targeted synthetic, Experimental
Rituximab, Biologic, Experimental

I thought Tocilizumab was FDA approved to treat PMR so I asked "What drugs are FDA approved to treat PMR?' Answer -
Only two drugs are FDA‑approved for PMR - Prednisone (Rayos®) and Sarilumab (Kevzara®)

Hope this information helps you. I have found the AI tool I use to be invaluable to do much of my online research. Simple searches on search engines are a pay-to-play so the businesses that pay the most get to show up at the top of the search results. This is not true with AI engines. I will caution that I have found errors with the AI engine - not often. I fact check my AI Engine if I am suspicious. Trust yet verify.

@jabrown0407 Hi. Super information. Thanks.😘
I will bring that to my rheumatologist and see what she says about that..