PMR - What do you wish you had known . . .

@pmrsuzie I hear you…..I’ve been lucky, no other meds or health issues. My Dr neglected to tell me that by going on Kevzara it would help me got off of prednisone. I was most successful at tapering off prednisone with in the first 2.5 months I was on Kevzara. No side effects.
Good luck

@pmrsuzie did you take methotrexate and did it work?

@cyndip. Same here, I have managed to come down to 1mg. My weight is still fluctuating though and now my eyes are puffy and the eyelids are drooping . The main issue I am having at the moment is, it is playing havoc with my thyroid. I was under active now I am over active . So I have to wait three months to see what happens.
Rheumatologist I have not seen one at all . I have been on prednisolone for over 2 years . I really can't wait to come off them.
Thank you for sharing your experience , it really does help to know we are not alone .

@jabrown0407 totally agree 👍

@tweetypie13 my dr has never even mentioned Kevzara…?

1. Kevzara works.

But neither my PCP nor an initial rheumatologist mentioned it as a possible treatment option. It took a board certified rheumatologist at the Vanderbilt Medical Center who recommended Kevzara for me to know about and agree to it. Yes, it's expensive. In my case insurance covers it. I am off prednisone and glad to be off it.

2. Prednisone masks pain of all sorts, not just PMR. When I was tapering, pain from spinal stenosis and from osteoarthritis in the hips began to appear. I confused that pain with PMR so I delayed the tapering process until an MRI and X-rays showed severe stenosis and moderate to severe osteoarthritis. Now that I am off prednisone, I am dealing with those two other conditions that were hidden by the prednisone but now I know the pain is not from PMR.

3. There is no single source of helpful information about PMR, no single bulletin, no single omniscient authority.
Until one appears it's up to us to use multiple sources like this one, to understand our unusual condition and, oddly, to help our doctors understand it better as well.

@susanalka it’s a biologic approved FDA for PMR…..chase him!
Been out for a few yrs, I think
If it’s $, check the kevzara website for financial help. 🤞

@gin3
I was offered mtx a few times and the possible liver side effects were too worrisome. Last year I was taking Tylenol everyday for hip/leg problems and my liver enzymes were elevated. A month of no Tylenol and they were normal. The rheumatologist remarked that "it's a good thing you didn't take the methotrexate". Plaquinil has been nixed by my retina Dr.

I was diagnosed in January '26. Suffered (for easily a year) from what I thought was "just getting old and out of shape." Pain, overall discomfort, mobility issues, and inability to sleep, and lots of brain fog. Getting out of bed in the morning was a comedy routine. Getting up from the dinner table became almost impossible without assistance. Until then, I lived on a cocktail of Tylenol and Motrin every 4 hours. It helped a bit...gave me the ability to get through the day.

I didn't think these were symptoms to tell a doctor...Until Christmas Day, after hosting the day before, I couldn't move. And the headaches (which I never realized could have been GCA). The progression from bad to impossible was amazing. And no doubt, some stress we had in our lives contributed to it.

Earlier in 2025 I went to my GP for a checkup. She was retiring, and I shared the achiness and tiredness I was experiencing. She did a Lymes test - of course, it was negative. As it was a year or so earlier when I complained of the same thing.

I wish I trusted what I was feeling and not tried to think I needed to push through the pain. Also wish I didn't listen to others who were my age or older offer their advice that "I have trouble getting out of bed in the morning," or "This is what getting older is like." Bull shXt! That's my biggest lesson.

This board has really been a savior to me. I would not have considered that methotrexate (which I tried), could not be right for me (it wasn't BTW). I would not have considered Kevzara (just took my third dose). And I would have continued the thought (like we all may have initially) that prednisone was amazing...it made me feel good again. I was cured!

No, it's not, and no, I wasn't cured.
It's like being addicted to an opioid. So I am on this same tapering journey you all are - which I learned here is not a straight path.

My doctor is on board with some of the strategies I learned here, even though she initially tried to drop me too quickly.

Thanks to all who have been on this journey longer than the rest of us and for sharing your wisdom and empathy. Nice to meet you, but would have preferred it had been under another more enjoyable circumstance!

@grownupcf please clarify….are you on Kevzara now?