How does Kevzara help with PMR symptoms and pain? I am being weaned

Posted by tsharkey01 @tsharkey01, Sep 8, 2023

I have had Pmr for 15 months now. It took forever to get diagnosed. I have been on 20 - 5 - 1 mg prednisone. My rheumatologist wants me to try kevzara. Is it worth it? I have been this way so long now I have forgotten what normal feels like.

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@pb50

I knew you’d have intel 🙂
I’ve just been hearing about the skinny side effect profile for these new drug entries. I can’t say I’m beset with side effects - thinning hair, etc, but I do believe and can’t prove that my “non smokers” lung cancer was a RA or RA treatment “gift”.

But what grabbed my attention was the question about whether it is a decent substitute for Presnisone. You may remember I had a 20mg Prednisone a few weeks ago, tapering over 16 days. It was the first time in 40 years I had any steroid because I had a psych reaction to that dose for ruptured disc. But this time. Wow. Pain free - even my rib pain from the lobectomy and my knee pain from life. . Energy.. Euphoria. As a child of the 60’s and 70’s, I will just ask how they missed prednisone.? 🙄 but it turns bone to sponge. So when I saw the question of whether Kevzara and Actemra were questionable subs for prednisone, my question is whether it delivers similar benefits?

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I think a prednisone burst for RA is okay as long as you are able to taper off quickly. Prednisone puts out the "flame" but the inflammation is probably still smoldering underneath. I took prednisone bursts for 15 years for flares of reactive arthritis and uveitis. I never needed prednisone on a long term basis like it was prescribed for PMR.

My prednisone was prescribed in large doses by my ophthalmologist for uveitis. I was very adept at taking 60 mg of prednisone and tapering off in a couple of weeks. One time I needed 100 mg of prednisone. I had Energy ... and Euphoria too. I actually asked my ophthalmolgist why prednisone wasn't a controlled substance. My ophthalmogist thought I might be feeling too good since I was on the verge of losing my eyesight in my left eye. Fortunately my eye started to respond to a split dose of 100 mg of prednisone and I tapered off quickly. I also came down from my highly euphoric state.

I would always have low level symptoms which is the smoldering inflammation that never ends. I think the smoldering inflammation caused long term damage. I have arthritis everywhere they look but it is called "degenerative arthritis" as compared to "inflammatory arthritis." I think my arthritis is more likely due to chronic low level inflammation even though I could always stop the flares quickly and reliably.

When PMR was diagnosed, it was the first time I ever took prednisone on a long term basis --- daily for 12 years. I acquired additional "prednisone related" medical conditions. I think nearly everything that happened was caused by a long term prednisone treatment "gift." My doctors could never explain why things would happen to me but they would always suggest prednisone played a role along with chronic "systemic inflammation."

Have you been diagnosed with PMR along with RA? I'm always interested in people with a dual diagnosis of inflammatory arthritis and PMR.

The reason why Actema seem to be an improvement for me over long term prednisone is that the goal of Actemra is to stop flares from occurring. I haven't had any flares in 3 years while on Actemra. My rheumatologist thinks I have finally achieved a "long term remission." I also think Actemra has eliminated the smoldering inflammation so I don't need to take any prednisone anymore.

I haven't had any additional problems due to taking Actemra. I hope it stays that way. Hopefully I can get off Actemra too. Time will tell.

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No. There was a question when I had an incredibly acute and painful onset, which did start in my hands with profound weakness and pain and within a couple of days attacked hips, shoulders, knees, ankles - it was awful. At that point my boss used his executive clinic in Manhattan to get me in with a fantastic Rheumy at hosp for Special Surgery. I was sero negative so that and the big joint presentation she said was ‘interesting’. But she put me on methotrexate and Humira and it worked - really within days.
Somewhere along the way I became sero positive., documented in 2019.
I’ve been fortunate and don’t have flares Often. But this last one was a doozy and he talked me into prednisone. Productivity is my siren song so it was heaven at 20mg. No pain, euphoria, and busy, busy, busy! But as it was tapered down over 16 days, all that wonderment vaporized 🙂

Like you, I have a mix of inflammatory and degenerative disease. As well as other - does the term ‘connective tissue’ apply to tendons? I’ve had multiple of those and am about to have surgery on one trigger and one dipuytren that was a trigger the first time around.

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Getting PMR into remission is the goal. Just about everybody starts with the prednisone because, as dadcue points out, it puts out the flame. Pain, stiffness often debilitating. Then the goal is to taper down the pred. But that’s where things get dicey. Some people are able to taper better than others. My PMR was managed but just barely for the last year. Even on 30mg of pred there was pain and stiffness and some really bad “ack I can’t walk” flares. My inflammation markers remained high. Doc added methotrexate to the pred and I was able to taper down to 10 but again it was just barely keeping things under control. Then at thanksgiving all hell broke loose and I couldn’t walk for three days. I started over. Long answer to your question but I added Kevzara just a month ago. I still take the methotrexate as well as prednisone but now I feel good. Inflammation markers are normal for the first time in a year. Stiffness and pain pretty much gone. It’s the Kevzara making the difference. The pathway forward is to get pred down below 10 and then off, then start decreasing methotrexate ultimately getting rid of that and down to only the Kevzara.

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@pb50

I knew you’d have intel 🙂
I’ve just been hearing about the skinny side effect profile for these new drug entries. I can’t say I’m beset with side effects - thinning hair, etc, but I do believe and can’t prove that my “non smokers” lung cancer was a RA or RA treatment “gift”.

But what grabbed my attention was the question about whether it is a decent substitute for Presnisone. You may remember I had a 20mg Prednisone a few weeks ago, tapering over 16 days. It was the first time in 40 years I had any steroid because I had a psych reaction to that dose for ruptured disc. But this time. Wow. Pain free - even my rib pain from the lobectomy and my knee pain from life. . Energy.. Euphoria. As a child of the 60’s and 70’s, I will just ask how they missed prednisone.? 🙄 but it turns bone to sponge. So when I saw the question of whether Kevzara and Actemra were questionable subs for prednisone, my question is whether it delivers similar benefits?

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So Pam, I have been on Kevzara since October along with 2.5 prednisone. Tuesday was my last day on prednisone and now Kevzara is carrying the load. I have had 6 injections and my 7th is next Tuesday. Still too soon to be sure there will be no flare but in a couple of weeks I will know for sure. Absolutely no side effects from Kevzara and so easy to inject.
Good Luck
😎🇱🇷

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@wilmingtonemperor

So Pam, I have been on Kevzara since October along with 2.5 prednisone. Tuesday was my last day on prednisone and now Kevzara is carrying the load. I have had 6 injections and my 7th is next Tuesday. Still too soon to be sure there will be no flare but in a couple of weeks I will know for sure. Absolutely no side effects from Kevzara and so easy to inject.
Good Luck
😎🇱🇷

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Just FYI ... I was doing injections every 2 weeks at the start on Actemra. I had a flare within a week of tapering off prednisone the first time. I needed to go back on prednisone for a while. It was disappointing but not a big setback. My rheumatologist increased my injections to weekly instead of every two weeks. I was off prednisone again within a couple of weeks on weekly injections. As long as I did weekly injections of Actemra, I had a sustained remission.

This may not apply to folks on Kevzara. I don't even know if Kevzara injections can be given weekly.

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@dadcue

Just FYI ... I was doing injections every 2 weeks at the start on Actemra. I had a flare within a week of tapering off prednisone the first time. I needed to go back on prednisone for a while. It was disappointing but not a big setback. My rheumatologist increased my injections to weekly instead of every two weeks. I was off prednisone again within a couple of weeks on weekly injections. As long as I did weekly injections of Actemra, I had a sustained remission.

This may not apply to folks on Kevzara. I don't even know if Kevzara injections can be given weekly.

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Are there osteo side effects like prednisone??

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@barracudacool

Getting PMR into remission is the goal. Just about everybody starts with the prednisone because, as dadcue points out, it puts out the flame. Pain, stiffness often debilitating. Then the goal is to taper down the pred. But that’s where things get dicey. Some people are able to taper better than others. My PMR was managed but just barely for the last year. Even on 30mg of pred there was pain and stiffness and some really bad “ack I can’t walk” flares. My inflammation markers remained high. Doc added methotrexate to the pred and I was able to taper down to 10 but again it was just barely keeping things under control. Then at thanksgiving all hell broke loose and I couldn’t walk for three days. I started over. Long answer to your question but I added Kevzara just a month ago. I still take the methotrexate as well as prednisone but now I feel good. Inflammation markers are normal for the first time in a year. Stiffness and pain pretty much gone. It’s the Kevzara making the difference. The pathway forward is to get pred down below 10 and then off, then start decreasing methotrexate ultimately getting rid of that and down to only the Kevzara.

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"The pathway forward is to get pred down below 10 and then off ..."

That sounds simple enough but single digits are where things really get dicey. I truly believe that is where Kevzara might shine for some people. It might not work for everyone but Kevzara might interrupt the inflammation pathway implicated with PMR/GCA. Once a person gets to 3 mg, that should be a low enough dose to give the adrenals a chance to recover.

I took Actemra but no reason to believe Kevzara won't work equally as well. Tapering from 10 mg to zero was easy when I took Actemra. I needed to stay on 3 mg for about six months until my cortisol level returned to near normal levels. As soon as that happened I discontinued prednisone.

My cortisol that my adrenals produce is regulating my baseline inflammation level and many symptoms have resolved. Actemra is preventing PMR flares from happening but targeting the right pathway. It is nice to have normal cortisol levels because those symptoms were awful too.

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@barracudacool

Getting PMR into remission is the goal. Just about everybody starts with the prednisone because, as dadcue points out, it puts out the flame. Pain, stiffness often debilitating. Then the goal is to taper down the pred. But that’s where things get dicey. Some people are able to taper better than others. My PMR was managed but just barely for the last year. Even on 30mg of pred there was pain and stiffness and some really bad “ack I can’t walk” flares. My inflammation markers remained high. Doc added methotrexate to the pred and I was able to taper down to 10 but again it was just barely keeping things under control. Then at thanksgiving all hell broke loose and I couldn’t walk for three days. I started over. Long answer to your question but I added Kevzara just a month ago. I still take the methotrexate as well as prednisone but now I feel good. Inflammation markers are normal for the first time in a year. Stiffness and pain pretty much gone. It’s the Kevzara making the difference. The pathway forward is to get pred down below 10 and then off, then start decreasing methotrexate ultimately getting rid of that and down to only the Kevzara.

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Sending good Juju to you both !!!

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@pb50

Are there osteo side effects like prednisone??

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None that I’m aware of. I never had bone loss on prednisone. I still had bone scans done. My scans were “normal” except for my lumbar spine. Way too much bone there because of severe osteoarthritis.

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@dadcue

None that I’m aware of. I never had bone loss on prednisone. I still had bone scans done. My scans were “normal” except for my lumbar spine. Way too much bone there because of severe osteoarthritis.

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Fascinating. I thought that bones turning to sponge was the big bad (and universal) consequence of prednisone.?

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