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Kevzara and prednisone for almost a year-
I have been treated for PMR with prednisone since June of 2022. Was doing well on 10 mg until 2 discs blew out in November of 2022. Had back surgery in April of 2023 and had to be off of the steriods for 8 weeks due to wanting bone growth following the surgery. It was absolute pure hell that I never want to go through again. Since getting back on the prednisone in June of 2023, I have been having just a terrible time with the PMR. I also started using Kevzara July of 2023. I still cannot walk more than a block with out severe lower back/hip/thigh pain. This is not from the back surgery, the back is great. This is the PMR pain area I call the "ring of fire". I have tried to taper down on the steriods but cannot get lower than 18 mgs. Now I am back to 20 mgs. I am in physical therapy to help with the walking and getting some strength back but it still has me in a really bad space. No energy, brain fog, blurry vision and lots of pain in the ring of fire. The shoulders will fire up off and on but not as bad as before. Has anyone tried accupuncture for PMR? Or any suggestions that might help!!? I'm only 67 and used to be VERY active. This is killing me, just sitting around and not being able to do too much. Not ven walk my dog! Any suggestions and info would be greatly appreciated!
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Hello @fishnfever, Welcome to Connect. Sorry to hear you are struggling with PMR. I know from my two flare ups it can be really disabling. Prednisone always got me through the pain but was difficult tapering off. I don't have any experience with Kevzara but there are other members who have started discussions and shared their experience with Kevzara. Here's a link that lists the discussions and comments - https://connect.mayoclinic.org/search/?search=Kevzara.
There is also another discussion you might find helpful for learning what others have shared about acupuncture and PMR.
--- Acupuncture and PMR: https://connect.mayoclinic.org/discussion/acupuncture-and-pmr/
Has your rheumatologist or doctor offered any suggestions to help taper off of the steroids or help with the pain?
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1 ReactionHi John,
Thank you so much for your reply! I will look at these links! My rheumatologist basically does televisits when I can get squeezed in. I'm about 1 1/2 hours away from the office. The medical system is terrible and she has no control over it. She has given me her cell number but I'm still not getting any info from her- I've done all of the research and just ask for the scripts to be filled. I would be willing to travel anywhere to find a dr. that is a specialist in this- I basically have no life anymore except at home....and that is cewrtainly not what I am used to.
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4 Reactions@fishnfever eek ! what you are describing sounds so complicated -i'm curious what your back surgeon thinks about your pains? where do you live ?
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1 ReactionHi- my back surgeon has done xrays, etc. and says my back is doing great. And it feels great- better than in years. Its not my back that gives me such problems, it's the hips, the back of the hips, the thighs and lower back . I live in the keys so have to drive to Miami for Dr.
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2 ReactionsI am still on prednisone and tapering. At 4.5 mg. What has helped me tremendously is eliminating all sugar and carbs from my diet. I eat meat, sardines, chicken, eggs and lots of veggies. No potatoes due to carbs. This has helped me feel like a person again--spirits up and much more energy. I do miss certain foods, like hummus especially, but this "diet" is helping me soooo much. I hope this helps you.
I have tried the anti-inflammatory diet- not much change at all. But I do know that sugar shoots everything into a bad place!! I try to eat all fresh, all clean, no processed foods. Basically the mediterranean diet.
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1 ReactionI am tapering off of Prednisolone from 15 to 12.5 and now 10mg but am having dreadful brain fogs feeling really lightheaded and dozzy, having headaches, chills and nausea. I spoke to a GP today who said that it is probably due to titrating down but I know there is a long way to go as she said after 10mg you titrate down by 1mg every month!!! My rheumatologist wants me to start methotrexate soon administered by injection by myself I am really nervous about taking this drug any thoughts please. My diagnosis was made of polymyalgia rheumatica as well as scleroderma and raynauds. Thank you
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