Prednisone

Look into Biological Kevzara…..

Are your inflammatory markers being monitored. There are add on biologics that can help. Are you proactive in minimizing side effects.?
The Mediterranean diet is worth trying.

@tweetypie13 I’m currently trying Metoject- and get bad headaches- I suggested Kevzara, but the rheumatologist refused to let me try that 😖

Hi. I too had to go back up on the pred. Not a fan as I have osteoporosis and as you know pred not good for bones! I’ve been doing a 5 day fast with food with a company called Prolon. Never in my life have a fasted. Today is day 4 and I feel pretty good. This is supposed to help with inflammation. I certainly feel better and am hoping this helps. Just a thought. I can’t say it’s totally from the fast or the uptick of pred. I’ll do whatever I can to eliminate as much pain as I can. Good luck. This PMR is no joke and I think the docs have no idea how debilitating it is for us.

I was diagnosed with high probability of PMR yesterday, although my rheumatologist suspected it 3 weeks earlier after the initial results of my blood work. He started me on 15mg prednisone, which only took the edge off the pain, but it helped. I'm 73 years old, 6'3" and 245#. I've been increased to 25mg prednisone starting today. I was told that the dosage and tapering off was an 18 month process. I'm hoping that 25mg does it for me but also worried that it won't.

@inga71 Such a bummer. Yes, there is little known abt this insidious disease.
I did not have any underlying conditions, or take any medications for other issues.
I was told as follows….at doses below 10mg…
Be pain free for at least 3 weeks, then taper no more than 10%, again be pain free for 3 weeks. As doses got lower it was harder, so I tried the alternating method, i e day 1 5 mg, day 2 4 mg, day 3 5 mg day 4 4 mg…which equates to a dose of 4.5 mg.
Also distinguish between PMR pain and body hurting is a challenge.
As mentioned, an anti inflammatory diet, and movement….. I was sent for Aqua PT which led me to get back in the pool and walk, low impact.
Maybe find another Dr.? Good luck

@mezack25
I think doctors are like everyone else. Some treat their work as a job and some as a profession. Only those of us with PMR know how life altering it is.

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.

@inga71 I wish I knew or you told us why the MD was against Kevzara. I went from 15 mg of prednisone to 2.5 without any problems. Going from 2.5 to 2 mg was a problem. I am currently on 2.5 for a while. If you go on Kevzara you will have blood draws every one to three months to monitor for blood problems.

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.