I’m sorry that you’re struggling, PMR affects everyone so differently. I’ve been maintaining on 4 mg of Pred relatively well. I decided to chicken out on the Kevzara due to fear of the side effects, I have Diverticulitis and have had skin cancer. Risk vs reward. I had fever, sore throat and felt terrible after first dose. As long as I can stay low dose on the Pred, which has no side effects so far, I’m going to stay with it and get bone density test every year or so. Some folks do well on Kevzara, I just didn’t want the added risk.

Hi @sheralee, I just had my first Kevzara injection on Tuesday. So far, so good. No side effects and a very slight improvement in shoulder pain. I’m on 17.5 mg of prednisone and my pain has been present since my last taper. I have been unable to taper for the last 2 mos. But have bounced around with prednisone for the past year with one taper as low as 12 mg only to inch back up again. I’m exactly who they describe in the Kevzara literature. Praying that I can move forward and leave Prednisone and the bad side effects behind. Prayers for remission for us all! ❤️
Sandi

That is great to hear. I’m so ready to kick my pain to the curb!

With Kervaza there are none of the prednisone side effects? I’m currently at 8 mg of prednisone and have hand tremors, fatigue, weight distribution issues, moon face, and a stomach ulcer. Would love to get all that back to normal.

@southtexas @sandiw77 @pointer134 @johnbishop Good afternoon all - the weather is beautiful today in Boston area! I'm pinging a few of you who have said they are starting Kevzara. I started a post called " Can we make PMR funny ? Can we fight the immune cells involved ? " Asking the following:
Do we know what cells we want to get rid of or how powerful the anti-iL-6R drug KEVZARA is in that fight? ... My own digging suggests that research is ongoing certainly for the first question ( meaning - there is probably antigen presentation to CD4+ T cells) . I ask those in group who are starting on KEVZARA - how has the pathophysiology of PMR been presented to you **? Have you been coached to imagine the drug working ?   As an example , using "guided imagery" is where a person with cancer imagines Pac Men (from the old Pac Man video game) gobbling up bad cancer cells.
* *Well today i stumbled upon a very informative video given by Leonard Calebrese ,DO from the Cleveland Clinic. It explains many things about the IL-6 pathway in a concise way !! If john would approve the link it is pmrandil6-dot-com and under the resources tab you eventually get to a video you can play . I will share this instead of a 10 page manuscript ( e.g. the 2022 review Ingrid E. Lundberg et,al.) to my non- science friends and family : )

Have been on prednisone 20 since Jan and unable to reduce beyond 15 . Labs were elevated so back to 20. Took first dose of Kevzara a few days ago. Anxious to see if this helps reduce my prednisone. Labs were all normal but I still get pain behind head and shoulders middle of day.

@southtexas @pointer134 @sandiw77 @kberlyhouse and others on Kevzara! Hope you are well !! I found a route to more informative pathophysiology for PMR by looking at titles for GCA! Assuming that because of the more serious nature (vision loss) of GCA, there is/has been A LOT of research there ! And the approval of tocilizumab.

So picture that drug blocking the IL-6, which is (part) of the cause of the inflammation !
And for the rest of us just on Prednisone only -
"Steroids inhibit T-cell activation, proliferation and polarization into Th17 cells. In
addition, they trigger a decrease in the level of serum IL-6."

This article has easy to read Abstract and a nifty figure (Fig 3) showing molecular pathways .
New Insights into the Pathogenesis of Giant Cell Arteritis:
Mechanisms Involved in Maintaining Vascular Inflammation
Hélène Greigert et al. J. Clin. Med. 2022, 11,
2905.

Thanks so much for sharing this. Reading the article now! ❤️

Hi @sheralee, I have just started taking Kevzara and really don’t have any thoughts yet. I just took my 2nd dose this morning. It’s only administered once every 2 weeks so I’m just hopeful that side effect free change is coming! 😂🤣 Will let you know when I have a true observation. Blessings!
Sandi

Thanks everyone. I start Kevzara on 6/23/23. Also look forward to leaving the severe side effects from Predisone I experienced behind. Sending good wishes to everyone.