1. < Polymyalgia Rheumatica (PMR)

Leflunomide, Kevzara for PMR, who knows about them?

Posted by elained @elained, Sep 6, 2023

Hi, I was diagnosed to PMR in 2021. My problem is that high dose steroid 'worked' but PMR returns when I go below 5 mg/day.
The doctor tried Methotrexate, so help me wean off the steroid, but I developed elevated liver enzymes and had to stop.

Now I'm on Leflunomide and waiting to see if it also affects my liver.

I hear that Kevzara is a monoclonal antibody with few side effects and it works wonders for PMR. BUT my insurance won't pay for it, I think.

I suffered from PMR for 4 years before I even talked with a doctor, and started treatment. I'm tired of the damage the steroid did to my body (skin particularly) and it depresses me when my old friend PMR wakes me up in the morning. Fortunately the pain subsides by noon.

Anyone know how well they've done on Leflunomide or Kevzara?

Elaine

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mimig1234 | @mimig1234 | Sep 7, 2023

I was diagnosed with PMR almost 2 years ago and have had to go up and down on prednisone and my skin just kept getting worse and worse. As soon as Kevzara came out in February my Rheumatologist suggested I try it. The cost is prohibitive but my husband spent weeks with the pharmacy and the manufacturer to get the cost down. It really took persistence. We will change our RX insurance at the beginning of the year.

The injection is very simple and I have had good results. I am now down to 5 mg of prednisone the lowest in 2 years. I no longer have the neck, shoulder and other pains I had. I still have morning stiffness and pain but I attribute that to my bad back which is a whole separate issue. I hope this was helpful. Good luck.

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1 reply
susan298 | @susan298 | Sep 7, 2023
In reply to @mimig1234 "I was diagnosed with PMR almost 2 years ago and have had to go up and..." + (show)
@mimig1234

I was diagnosed with PMR almost 2 years ago and have had to go up and down on prednisone and my skin just kept getting worse and worse. As soon as Kevzara came out in February my Rheumatologist suggested I try it. The cost is prohibitive but my husband spent weeks with the pharmacy and the manufacturer to get the cost down. It really took persistence. We will change our RX insurance at the beginning of the year.

The injection is very simple and I have had good results. I am now down to 5 mg of prednisone the lowest in 2 years. I no longer have the neck, shoulder and other pains I had. I still have morning stiffness and pain but I attribute that to my bad back which is a whole separate issue. I hope this was helpful. Good luck.

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I am happy that Kevzara is working for you! May I ask how long it took for you to see results/improvement? I have had 8 shots now and do not see any change. My rheumatologist said it could take up to 3-6 months to see results. I did read the Rx info from Sanofi, the manufacturer, which said that clinical trials for PMR only found 23% of patients achieved remission from
the treatment. Not encouraging, but I am hoping. Continued good luck to you!

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mimig1234 | @mimig1234 | Sep 7, 2023

I have taken 4 shots so far. I cannot say I am in remission but certainly have felt improvement at lower doses of prednisone.

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kberlyhouse | @kberlyhouse | Sep 11, 2023

I have also started Kevzara - 4 injections so far (2 months total). I have found that weaning down on Prednisone is going very well. I am down to 3 mg/day and able to exercise! That is the first time in 2 years I can say that. I still have pain, especially the day of and the day after my injection, but it improves over the next few days. I have also recently cut out eating meat and eggs (still eat fish) and notice the roving inflammatory pain is no longer there (unless I eat meat) for some reason.

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