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Wait 4 flare to happen B4 starting Kevzara or ?
My Rheumatologist wants me to start Kevzara. She's concerned I'll have problems with flares as I taper off Prednisone because I had to increase from 15mg to 20, to 25mg to get full relief, and my PMR pain and symptoms were really brutal and incessant from Mid-March until I was finally diagnosed 7/31/26. The pain woke me up every single night. I had to get out of bed and sit upright on couch with pillows under each arm to try to sleep.
It would start every night around 1-3am, and the pain/symtoms lasted all AM and into the early afternoon before they'd start to wane and then do it again every night. So, it was very severe for many months before I got diagnosed and treated. So that's a reality I sure don't want to repeat if I can help it. I've just tapered from 25mg to 22.5, to 20mg last Saturday. Have a lot of my old chronic pain back and can "feel" some of the PMR areas but no PMR pain or symptoms.
Before you can start Kevzara, you need to rule out multiple diseases.
I already did the TB,HIV,HEP B & C blood tests, all negative. Waiting for prior authz from my insurance. Also, I'm scheduled for Endoscopy (but not until Nov, to be sure I don't have any ulcer, GI bleed, or Celiac disease). I'm going see if I can get in sooner than November, so I'll know if I can take Kevzara or not.
Another reason for Endoscopy is my Iron Saturation had gone down to 9. Need to know if there is bleed causing that. Had to get 5 a iron IVs. Or was it from all the inflammation?
Also, Kevzara is very expensive, even though I know it'll be whatever my RX deductible is for the year then everything is free. It's just hard to think of it as OK to spend a lot of money if no flares yet. I don't want any flares, ever, of course, but need your feedback if you would. Would you wait to see if you actually get a flare first before starting Kevzara? There's possible side effects for it too. Thank you all so much for all your help and input. I've learned so much from you. Blessings.
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@kjoed53
REALLY GOOD POINT re not saving "payment" options, so we don't get billed without knowing it ahead of time and approving it. Thanks for mentioning it. Blessings.
My iron saturation got down to 4 with my last flare—after 1.5 years off prednisone. They wanted to do an iron infusion, but after a month on prednisone, the iron saturation was up to 16, low but in the normal range. I don’t know why they want to do an invasive procedure like colonoscopy as the first response to anemia. There can be so many causes, and often it resolves itself without intervention.
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2 Reactions@54pontiac
Thanks for sharing your experience. I know what you mean, and Endoscopy isn't as invasive as a colonoscopy, which I don't need, but that's the first thing my PCP NP thought when she saw my iron saturation. She thought, does she have a GI bleed of some kind? That's how I got sent to GI Dr. But, since blood tests 6/15 showed not only iron saturation issue but also high CRP and ESR, with previous negative RA etc, etc, I looked up info re my symptoms and lab results and PMR came up. Then I learned about hepcedin rising due to the inflammation and blocking available stored iron.
So, I'm thinking it's highly possible if not likely that it was the inflammation. But, if I'm going to start Kevzara, I do want to know if I have any GI issues. The GI Dr. also wants to rule out Celiac disease (which can affect iron), and that means she'd biopsy a small sample through the Endoscopy tubing. I've had stomach pain in past and had a gallbladder test which showed low-end of normal, but back then (2022) a different GI Dr said the symptoms could also be an ulcer, but I didn't have the Endoscopy back then due to authorization mix up. So, I do want to be sure that I don't have any ulcer.
Thanks for sharing that your iron went down even lower. My PCP NP said she'll check my iron saturation 6-8 weeks after last IV, as it takes that long beforw they can tell if the iron has gone back down or not. Blessings.
i started i
last February on 15 mg of prednisone for 2 weeks; then 12.5mg for 2 weeks then 10mg for 2 weeks. after that it was 9mg a day for month and so on.... I was in remission for awhile but when i hit 4mg it all came back. now ny Rheumal
togist is suggesting Kevzara? I don't like reading about the side effects that could occur.
My brother sent me an article from Time Magazine about researches finally figuring out what the root of the problem is for PMR. They say that it's not about the muscles. It's the dehydration between the Fascia & the Tissues that's causing the problem. Has anyone else heard about this? The product is a Supplement called "Facial". You take 2 pills a day 1 in morning and 1 at night alongside Prednisone. I Might give it a try. Greg in Bay area
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1 Reaction@geese1
Thank you for sharing. I just searched for "research re PMR being due to dehydration between fascia and tissue." It says there's a 2026 study of "exercise induced dehydration" but it has no causal issues for PMR from what I read. Might want to research for yourself further. It seems there's always a new product for us to try for anything that ails us!! :-). Thanks for sharing it. I'm so sorry to hear you had a bad flare after tapering down to 4mg. My Rheumatologist wants me to start Kevzara too. It's kind of a trade off I guess. Prednisone is so bad for our bodies too that the sooner we can get off of it the better. I've seen posts here that Kevzara takes 6-8 weeks to build up in our system. It's something we each have to decide. Every drug has possible side effects. Many people here use it with no issues. I hope you find a solution that works for you. Blessings.
@54pontiac I have been Dx with anemia of a chronic disease. This means they do not know what the cause is and the only treatment they think they use is a transfusion. I too find that being on prednisone keeps my hemoglobin just inside the green zone. I haven't seen 16 in over 7 years. I live between 10 and 13.5.
They are looking for internal bleeding when they do a colonoscopy based on anemia. If they find nothing, then they do an endoscopy. If that shows nothing then you swallow a pill camera that takes like 10 pics per second for 8 hours. Think of your GI doctor having to watch that. There is not enough popcorn and Coke to make me want to watch that - looking for internal bleeding.
They should have tested your vit B since this is a simple problem if that is the cause of your anemia.
Do not take iron and or Vit B without a doctor managing it since you can do serious harm to yourself if you do not need supplemental iron or Vit B.
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