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First Kevzara injection at 3 wks

Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (17)

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Profile picture for ess77 - Elizabeth @ess77

@stonewheel and all... Yes, the flare is definitely improved. I couldn't be typing or thinking well otherwise. I can now spend some time up doing daily small chores-feeding cat, cleaning litter - usually, fixing breakfast and cleaning dishes... those kinds of small everyday chores. Some days they are done piecemeal, others I can do most at once. Just depends on these crazy muscles and such. The pain is always there, but much reduced and controlled by Prednisone, not entirely.

Today, I awoke with intestinal problems from nowhere! Fun! So, my usual morning dose I take at 5-7 each morning I just took, at 1 p.m. My tummy would have rebelled and man, I am truly feeling the difference. I am hurting like crazy, heavy pain increase and muscle freezing. I waited too long I think so am paying the price... Hips, shoulders, back and all my arthritis in arms and hands, neck are yelling pretty loudly right now.

Apparently, I have, maybe this is normal for those going on Kevzara, PMR that doesn't respond to Prednisone anymore and needs more consistently to help with symptoms? I think that's the criteria for this treatment? I just realized the Kevzara will replace Prednisone to control the flare symptoms, without the heavy dependency and side effects. I thought it was a temporary medication to get us off Prednisone. I'm happy to stay on Kevzara if it works which it appears to. What side effects have you experienced? You mentioned having to go from 2 to 3 week shots... what was the reason for that change?

I know it may take a year or so to get the symptoms controlled after beginning tapering Prednisone after the Kevzara begins working, 3+ months or so. That's fine with me. I don't mind if it helps! With this disease, as with most I've experienced, I'm willing to do whatever it takes to improve my health. What side effects do we see, other than serious infections... perhaps some low blood pressure? Yes, too many questions. I spent time last night researching on Perplexity and began to wrap my head around this treatment. I only heard about it a week or so ago, so it's quite a surprise and gives me hope I had lost.

I am actually very pleased to be off a lot of heavy meds. It took me 3 years working with a very special dear Mayo physician to taper off Gabapantine, Lyrica, Hydrocortisone, Oxycodone, even 800 mg Ibuprofen 4X daily... and some anxiety drugs as well. Tapered gradually off every one of the heavy drugs I was taking for years, begging the doctors to reduce or remove them from my list. No one was willing to invest the time or effort to help me do that. I experienced brain fog, personality changes, intestinal issues and other side effects. What a joy to finally be off these chemicals that may well be the underlying cause of some of my current health issues. Too many chemicals!

Thanks for your input. I anticipate good results. Think it forward! Boy, I am hurting. Shows my dependency on Prednisone. Chat later. Blessings. Eliazabeth

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Replies to "@stonewheel and all... Yes, the flare is definitely improved. I couldn't be typing or thinking well..."

@ess77 keep asking, nagging, chasing…..as everyone here says, you are your own best advocate……you can do this!

@ess77

Okay ... your pain medication list reveals that you have a lot going on. I don't think it is only PMR. I truly hope Kevzara will work for you. Kevzara will target PMR inflammation but Kevzara also inhibits IL-6 which effectively blocks this pro-inflammatory cytokine from triggering a systemic inflammatory cascade. I think chronic high levels of IL-6 can set off a chain reaction of inflammation. I hope Kevzara stops the chain reaction for you like Actemra (tocilizumab) did for me. I'm so happy to have reduced and ultimately to have stopped prednisone along with other medications that treated prednisone side effects. Since your pain medication list indicates there may be more underlying factors than just PMR, the IL-6 pathway block can be especially helpful in dampening widespread inflammation.

I remember when a neurosurgeon was increduluous that my pain medication list wasn't a mile long for a different problem that makes the top 10 list for the worst pain know to humanity. I confessed to the neurosurgeon that I needed to take a lot of prednisone but some surgery also helped.