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PMR: Are there treatment alternatives to Prednisone?
Hi, all. I'm wondering if anyone is finding any alternatives to Prednisone in treatment of PMR?
I've been on the PMR/Prednisone train for about 6 months now (was in pain and stiffness for a year or two before but just thought I was "getting old"), being treated through Rheumatology at Shands Hospital (Great people, like Mayo, I'm sure.) in Gainesville, FL. I started at the high dose of 60 mg, it was amazing--within days I felt like I was invincible, having delusions of grandeur due to "Prednisone Psychosis" (It's a thing. And I ride it for all it's worth. 🙂 )
--and launched into crazy lucid dreams and auditory hallucinations--honest to God, one night I heard Wolf Blitzer from CNN standing at the foot of my bed and in a clearly audible voice say: "Right." -and I was up for the night and most nights after. In fairness to my brain, I watch The Situation Room sometimes, so I should've seen that coming.
I was only sleeping, like 1-2 hours a night, but had incredible energy. My nocturnal meanderings included a voracious appetite--for which I tried to stave off weight gain by eating large quantities of vegetables. My wife refers to me as "The Were-rabbit", with appropriate emojis. And with my morning evacuations I could fertilize half of England. I've retained fluids to the point that I look kind of like a squirrel with a mouthful of acorns? Only without the benefit of said nutritional content. I look like--if Alfred Hitchcock and Winston Churchill had a love child? I would be that child.
These days, I've tapered down to 15 mg/day, and the pain and stiffness are returning. Now I look like Winston Churchill/Alfred Hitchcock (Where did my chin go? I distinctly remember having a neck.), only I'm dragging out my cane again (Okay, that's a little Churchillian, at least) to get up and move around.
If I sleep 5 hours at a stretch, I call that:
"Boy, I'm sleeping the whole day away!"
Fortunately for me, I'm teaching remotely via Zoom, and my students are all so kind as to not ask what happened to my chin. Some days, I can't even remember if I was wearing pants. They love me for the madman that I am.
As I consider increasing dosage and heading back into Prednisone Psychosis land, I wondered if there's an alternative to allow me to hop off the train?
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I have taken 1.5 for four days now. Tomorrow I raise it to 3.0.
I’m staying at 3 for ten days. I’d I feel marked relief at 3.0, I’ll stay there longer before maxing at 4.5.
Diagnosed with PMR. Don't want to keep taking prednisone because of long term side effects. Any suggestions?
Hello @dnricketts, Welcome to Connect. You will notice that we moved your post to an existing discussion on the same topic here. If you click the link below it will take you to the beginning of the discussion where you can learn what others have shared.
--- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/.
Have you discussed your concerns of long term side effects of prednisone with your doctor or rheumatologist?
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3 ReactionsThank you for your reply. Actually, I was asking this question on behalf of a family member that I am going to encourage to join this group. The intent of my question was to see what if any feedback I would receive from this group. I encouraged by your thoughtful response to my question. Again, thank you.
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2 ReactionsThere is now an alternative to prednisone that was recently FDA approved for the treatment of PMR. It is a biologic called Kevzara (sarilumab).
https://www.pharmacytimes.com/view/fda-approves-sarilumab-for-adults-with-polymyalgia-rheumatica
I don't have any personal experience with Kevzara. My rheumatologist was running out of options for my long term PMR. The side effects of my 12 years on prednisone were taking a toll on me.
Other medications used as steroid sparing medications like methotrexate and leflunomide didn't work very well for me. My rheumatologist tried me on Actemra (tocilizumab) 4 years ago and it worked well. After more than 12 years of prednisone daily in excess of 10 mg, I am finally off prednisone. I'm still on Actemra so I'm not medication free. My rheumatologist thinks I'm better off on Acterma instead of prednisone. I would wholeheartedly agree!
The mechanism of action of Kevzara and Actemra is basically the same. Both biologics are IL-6 receptor blockers. IL-6 related inflammation is implicated in PMR and GCA.
https://www.pmrandil6.com/il-6-and-pmr/#:~:text=IL%2D6%20is%20implicated%20in%20the%20pathogenesis%20of%20PMR&text=However%2C%20persistently%20elevated%20IL%2D6,inflammatory%20conditions%20such%20as%20PMR.
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3 ReactionsI have a feeling your sense of humor will carry you through a great deal.💞
Thank you so much for that information dadcue! I will definitely look into those medications and pass the information on to my family member (brother).
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2 ReactionsActemra is not FDA approved for the treatment of only PMR. Actemra was FDA approved about 5 years ago for the treatment of GCA.
PMR is known to be "associated" with GCA. I have refractory PMR only and I have never been diagnosed with GCA.
Since PMR is closely linked to GCA, my rheumatologist submitted a special request in order to get Actemra authorized for me. He felt that Actemra "should work" for me but didn't make any promises.
My rheumatologist said I was too young to take prednisone for the rest of my life. He also stated on the authorization request that no other suitable alternative existed for me.
My rheumatologist now says Kevzara might be another alternative for me in the future. Alternatives to long term prednisone are a recent advance in the treatment of PMR and GCA.
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2 ReactionsYour starter dose of pred was far too high unless you had GSA.
A PMR pred dose of 15mg should be enough to reduce pain and stiffness in my opinion.
You will need to slowly wean down your dose. Good luck !
I am finally off prednisone after 13 months. I have started generic Lyrica (pregabalin) for tarsel tunnel and nerve entrapnents in my leg. Has anyone had side effects from Lyrica? I take 50 mg at bedtime. I feel better than I have in 2 years. My back also feels better.
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