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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@dadcue

I only have my experience with Actemra but Kevzara should work roughly the same if it is going to work.

It might take 3 months for you to know if a biologic is working or not according to my rheumatologist. I tapered by 1 mg per month for the first 3 months after starting Actemra. I may have been too cautious but that was how I tapered at first. Nobody gave me instructions other than "try to taper off prednisone."

I started with Actemra injections every two weeks the first time I tapered off.

I expected another failed attempt to taper off during the first 3 months while I tapered by 1 mg per month. I was surprised that I didn't have to increase my prednisone dose.

I switched to a 1 mg per week taper mostly just to see if I could taper faster or not. I was still expecting to have a flare at any time. When I reached 3 mg of prednisone, I wasn't sure what to do so I asked my rheumatologist. I was told to stop my taper until I could be evaluated by an endocrinologist. I stayed on 3 mg of prednisone for a couple of months.

The endocrinologist was concerned about my low cortisol level but said she expected it to be low given I had taken prednisone for 12 years. She was optimistic that I had a measurable cortisol level even though it was low.

I stayed on 3 mg of prednisone until my endocrinologist said my cortisol level was "adequate" and that it "might be safe" to discontinue prednisone.

I went from 3 mg to zero in a couple weeks without any real tapering plan. It was more like "testing the water" before "taking a leap of faith." My endocrinologist reassured me that I could take prednisone again if I needed to.

I had a need to take prednisone again but only temporarily. The second time I tapered off was much easier. I went from 15 mg to zero in 3 months the second time after my Actemra injections were increased to weekly.

I have been off prednisone for nearly 4 years. My rheumatologist thinks I'm better off being on Actemra. I currently do a monthly infusion rather than the injections.

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Hi my friends,
Thank you fir your input. Kevzara...
So it tells me you Damn sure have the correct diagnosis...
Waiting 3 months if it didn't work, would probably invoke stress, or anger. Probably both.
But not able to see an rheumatologist . Is the issue.

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@jiminmich

Hi my friends,
Thank you fir your input. Kevzara...
So it tells me you Damn sure have the correct diagnosis...
Waiting 3 months if it didn't work, would probably invoke stress, or anger. Probably both.
But not able to see an rheumatologist . Is the issue.

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I think PMR was the correct diagnosis when I was initially diagnosed. However, I clearly had other autoimmune disorders before PMR was diagnosed. Those other problems didn't magically disappear after PMR was diagnosed.

Multiple things contributed to not being able to taper off prednisone for 12 years. My rheumatologist maintained that PMR was my "primary diagnosis" but also said I had a "full range" of other problems and it would be impossible to adequately treat everything.

I would agree targeting the IL-6 pathway was the correct pathway to target since I was able to taper off prednisone.

"Dysregulated persistent IL-6 production has been demonstrated to play a pathological role in various autoimmune and chronic inflammatory diseases."

IL-6 has been implicated in PMR/GCA but those aren't the only autoimmune disorders that IL-6 plays a role.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3491446/#:~:text=Interleukin%20(IL)%2D6%2C%20a,autoimmune%20and%20chronic%20inflammatory%20diseases.
Sometimes it seems like treating a specific autoimmune disease and only focusing on one diagnosis isn't the best approach. Targeting the primary inflammation pathway rather than a diagnosis might be better.

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I am at 4mg. And tapering 1/4 mg. every week or two. I opted to not get any vaccines this fall and am being very careful about exposure in public. Which leads me to thinking about Prednisone sparing meds. Instead of Kevzara to target Il-6. I have started a daily dose of Andrographis extract.since it suppresses Il-6. It also boosts the immune system so is usually contraindicated for folks taking immunosuppressants, among other drugs. Seems to be working. Hope it helps with the viruses floating around this winter. Anyone have insights about this approach?

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Good morning. I just had my 2d injection of Kevzara this morning, Nov 7. Administered by my lovely wife. the next one in 2 weeks I will self-inject. I was diagnosed in January of this year and put on 20mg of prednisone that we all have a love/hate relationship with. I tapered to 0 for 5 weeks and then had a brutal 5 day flare which put me back on prednisone. Doc told me when I was diagnosed about Kevzara in trials for PMR. Approved for RA since 2017 and approved for PMR in February of 23. Had labs on Oct 30 and Sed and CRP all back in normal range. But too early to say if Kevzara is the reason. Kevzara can take up to 3 months to achieve full effectiveness. Next week I drop to 10mg of prednisone and the plan is to continue to reduce the prednisone until I am off it entirely while on Kevzara. If a self injections every two weeks gets me of prednisone for good, no problem. I think it is worth a try for you.
Good luck

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@wilmingtonemperor

Good morning. I just had my 2d injection of Kevzara this morning, Nov 7. Administered by my lovely wife. the next one in 2 weeks I will self-inject. I was diagnosed in January of this year and put on 20mg of prednisone that we all have a love/hate relationship with. I tapered to 0 for 5 weeks and then had a brutal 5 day flare which put me back on prednisone. Doc told me when I was diagnosed about Kevzara in trials for PMR. Approved for RA since 2017 and approved for PMR in February of 23. Had labs on Oct 30 and Sed and CRP all back in normal range. But too early to say if Kevzara is the reason. Kevzara can take up to 3 months to achieve full effectiveness. Next week I drop to 10mg of prednisone and the plan is to continue to reduce the prednisone until I am off it entirely while on Kevzara. If a self injections every two weeks gets me of prednisone for good, no problem. I think it is worth a try for you.
Good luck

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I remember when I first started taking Actemra about 4 years ago. My ESR and CRP were always somewhat elevated while I was taking prednisone. I just assumed being slightly elevated was normal for me.

After Actemra was started, my ESR and CRP were so low that I got concerned. I asked my rheumatologist if my inflammation markers were too low. My bubble burst when I learned that these labs aren't reliable anymore when you are treated with an IL-6 blocker.

My inflammation markers remain low on Actemra. I think in conjunction with having no PMR symptoms then PMR might be in remission and my chronic inflammation is controlled. However, CRP levels may not accurately reflect the severity of infectious disease in patients who are being treated with Actemra. The same is probably true for Kevzara.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8003879/
If you have symptoms of an infection, don't let someone tell you you don't because your inflammation markers are normal.

"CRP levels may not accurately reflect the severity of infectious disease in patients who are being treated with TCZ. Although this fact may be known to rheumatologists, it should be disseminated among physicians attending patients at the ED. Prompt recognition and special attention is needed when evaluating these patients for probable infectious disease while on TCZ treatment. Interestingly, in our study, despite the impressive effect of TCZ on acute phase response, symptoms were not masked by the treatment and no significant delay in the diagnosis was made, leading in a prompt initiation of antibiotics and resolution of symptoms."

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@dadcue

I hope Kevzara works for you.

Don’t expect any overnight changes in your condition or prednisone dose. My rheumatologist said it often takes a few months to notice a difference.

If you have been on prednisone for more than a year, your adrenals might not be ready to produce cortisol anytime soon.

Did your doctor tell you what to expect after starting Kevzara? You still need to taper slowly but hopefully things go smoothly for you.

With some luck you might be able to stop MTX too.

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No changes yet but only 2 doses thus far.

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I've been on prednisone for 10 years with pmr. Just started kevzara. Reduced prednisone from a high of 40mg to 2mg. Also in pain management taking percocet. Hopefully this will all work.

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@dadcue

I was diagnosed with PMR about 17 years ago. I took prednisone for 13 out of those 17 years. My rheumatologist wanted me to try a biologic similar to Kevzara. My rheumatologist didn't want me to take prednisone for the rest of my life and described the biologic as my "best chance" of ever getting off prednisone.

The biologic came with "no guarantee" that it would work. My rheumatologist just felt it was "worth a try" and I wouldn't know if it would work unless I tried it.

The biologic offered to me was called Actemra. It shares the same classification as Kevzara. Both medications are IL-6 receptor blockers, IL-6 is the pro-inflammation cytokine implicated in both PMR and GCA. When IL-6 levels are too high we have too much of the inflammation that results in PMR and/or GCA.

Both Actemra and Kevzara are large molecules that attach to IL-6 receptor sites in cells instead of the IL-6 cytokine. Somehow that allows inflammation to decrease and we feel less pain. Nobody knows precisely how these medications work. Both Actemra and Kevzara should work in the same way. They don't work immediately like prednisone does but after 3 months or so you should start to feel the difference.

Actema is FDA approved for GCA.

Kezvara was recently FDA approved for PMR

Both biologics were approved for the treatment of rheumatoid arthritis about 10 years ago but have since been approved to treat other types of autoimmune conditions.

Actemra worked for me. I was off prednisone a year after it was started. Technically, I still have PMR without the pain that PMR caused and the side effects that prednisone caused.

My rheumatologist thinks I'm better off being on Actemra instead of prednisone. I agree with my rheumatologist because I feel much better now than I ever did when I took prednisone for years and years.

I don't have any personal experience with Kevzara but it should work the same way that Actemra works.
https://www.actemra.com/gca/considerations/how-it-works.html#:~:text=When%20your%20body%20produces%20too,to%20attack%20your%20healthy%20cells.
I personally haven't had any serious side effects from Actemra. There are potential side effects. I think the side effect profile for both Kevzara and Actemra are similar.

My rheumatologist would say the risk of side effects from Actemra is less than the side effects from long term prednisone use. However, he also said that if I only needed a relatively small dose of prednisone for a relatively short period of time then prednisone might be better.

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Interesting. Is this a first line drug for RA? Could I stop my Remicade in a switch to Kevzara or Actrema? Or would this be used as an alternative to my rare use of Prednisone for flares?

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@pb50

Both Kevzara and Actemra (IL-6 inhibitors) are FDA approved for the treatment of RA.

Remicade belongs to the class of TNF-inhibitors and is more commonly used for RA.

No biologic is FDA approved for Reactive Arthritis (ReA) because of lack of research. TNF inhibitors are usually used because ReA and RA have similar characteristics.

In my case, Actemra was used to treat PMR and it seems to work for ReA too. I got lucky because it is difficult to "optimally treat" both ReA and PMR.

I tried Humira and it didn't seem to work for PMR.

You might have the same problem with both RA and PMR. What works for one doesn't usually work for the other.

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@dadcue

@pb50

Both Kevzara and Actemra (IL-6 inhibitors) are FDA approved for the treatment of RA.

Remicade belongs to the class of TNF-inhibitors and is more commonly used for RA.

No biologic is FDA approved for Reactive Arthritis (ReA) because of lack of research. TNF inhibitors are usually used because ReA and RA have similar characteristics.

In my case, Actemra was used to treat PMR and it seems to work for ReA too. I got lucky because it is difficult to "optimally treat" both ReA and PMR.

I tried Humira and it didn't seem to work for PMR.

You might have the same problem with both RA and PMR. What works for one doesn't usually work for the other.

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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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