Update after Rheumy visit : Rheumy was happy all... - PMRGCAuk

PMRGCAuk

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Update after Rheumy visit

GMA74 profile image
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Rheumy was happy all labs good but ESR climbing is concern . He examined and questioned me for GCA symptoms. Bumping me back up from 15 to 20 for a few days and then I’m to report back to see if shoulder & neck discomfort improves. Repeat labs in two weeks

He may do an aortic ultrasound if ESR does not come down

He did tell me if my vision impairs to take 60 mg prednisone and call office right away

Hes a seasoned NP, in a practice with 2 MDs but told me he seems to be the PMR/ GCA provider

He gave me info on newly approved by FDA drug

Sarilumab ( Kevarza). Any one have experience with it. I’m hoping not to take it

FYI. Told me his male patients tend to be harder to manage. Have more prednisone complications

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GMA74
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PMRpro profile image
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Kevzara is an IL-6 inhibitor, like Actemra, but works on a slightly different principle I think. Actemra works in PMR as well as GCA but has not been approved anywhere for PMR as the studies weren't available to apply for approval and my rheumy says it is unlikely to happen now as Actemra is out of patent and so the price is likely to go down dramatically in the near future and they wouldn't recover their costs (it is a VERY expensive process and why new drugs are so expensive as the drug company that is the point at which they make money for the next drug development).

If you like the heavy-duty read, this expalins why Kevzara is found to be better than Actemra

pubmed.ncbi.nlm.nih.gov/333...

ifeelold profile image
ifeelold

I had very poor progress with Prednisone. My doctor put me on 16 mg of mythlprednisone 7 months ago. I was able to reduce quite well down to 4 mg currently. I pushed it down to 2 but had very bad reoccurrence of symptoms. So went to 8 for two days then back down to 4mg where I currently am virtually pain free. I struggled with Prednisone for over a year. To cope I took heavy doses of Advil. I don't know about kevarza, but there is light at the end of the very long tunnel,it's just a matter of finding your particular path (med that works for you) don't be afraid to try something new. It might be just the thing you need. Best of luck on your journey, I'm still on mine, but finally coping thanks to all the great advice and help from this group. O swear they know more than most of the physicians.

Btw, my current PMR is a nurse practitioner and he is more knowledgeable about this condition than my rheumatologist was. Plus he listens

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