PMR: Are there treatment alternatives to Prednisone?

Posted by ronhonn @ronhonn, May 20, 2020

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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for ttorre44 @ttorre44

I have just had to reverse a tapering off of Prednisone. I started at 20mg and made it down to 8mg and the pain came back with a vengeance. My Dr. advised I go back to 10 which I have done. It is helping. However he wants me to consider Hydroxychloroquine, Methotrexate, or Kevzara as alternatives to Prednisone. Does anyone have any experience with any of these alternatives they would like to share? I have an appointment coming up very soon and any information I can get is helpful. I have read up on potential side effects of each of these but that is not a total deciding factor. The odds of a side effect can be million to one but if you are the one it does not help. Thank you for any info you may share.

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@ttorre44 I'm in the middle of this process. Was on a tapering dose of prednisone for two months, starting Hydroxychloroquine the first month. The 2nd month's taper (May) was a bit easier, but after 8 days off of prednisone, I started waking up stiff and in pain again. Doc said it can take up to 3 months for the hydroxy to work full force. So she prescribed 30 days of 5mg prednisone 1x daily to help get through this next month. I hope it works. While prednisone helps the pain and stiffness, I do not like feeling weak and tired while taking it. Good luck to you!!

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Kevzara has worked for me, without apparent side effects. After three months on Kevzara, I was able to begin to taper off prednisone. At the end of 6 months I got down to 0 mg of prednisone without significant problems.

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