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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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This is a reminder to everyone - PMR is a default diagnosis, meaning if you fail to test positive for a bunch of other Rheumy stuff and you have certain blood markers at some level then they diagnose PMR. PMR is not a single thing, or maybe it is, no one knows for sure. To this day there is no test to confirm PMR. This is the main reason that everyone is different and there is not a single protocol for treating PMR. Clearly it is not a one size fits all problem when seeking a solution. It drives me crazy but my Rheumy consistently says "every patient is different" - and I finally grasp what she means and has to deal with daily when treating her patients with PMR.
I wish everyone a Happy New Year!
My wish for each of us is that we find the path to success with our PMR treatment.
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3 ReactionsHi; unfortunately I am in Wilmington, NC not Delaware. A little history. I was diagnosed at the end of January 23. I started at 20 mg and was down to zero by September. Then I had a flare that sent me right back to 20mg but by that time Kevzara had been approved for PMR. Tomorrow I get my 6th dose. I am at 2.5 mg currently and depending on labs of Jan 4, I may be off prednisone entirely by Jan 9. Yes, I have a very positive view of Kevzara but you should know that it is a biologic and can suppress the immune system. Google Drugs.com and download:"Kevzara: 7 things you should know". My symtoms have resolved and I feel great. But, until I am totally off prednisone and Kevzara is carrying the load, final chapter has yet to be written. I hope you have good insurance because Kevzara is a Tier 5 drug.
Best of luck, Happy New Year, and keep in touch.
John
Taper to 4 mg. a day in AM and stay there and stay there and see how you feel.
I try. I have decided to start a journal. This is all new to me. I was told years ago I had osteoarthritis but this is totally different.
Thank you.
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2 ReactionsThank you
Just at the beginning of this. Ugh
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1 ReactionYou might want to Google LDN for PMR. Low dose of a drug with few side effects that some people are having good results with. You would have to go to a naturopathic/alternative medicine doctor. Traditional MDs can’t prescribe it because it’s an off-label use. Lots of studies going on with it.
Was diagnosed with PMR October of 2016 hospitalized was so very sick felt like I was dying . Pmr came on after a very bad upper respiratory infection. Started on Prednisone started tapering down but took me two years to get off of them. Started feeling back to a normal life in spring of 2020. During that time my husband was diagnosed with stage four gastric cancer and passed away to this day I don't know how I made it through. I could barely walk at times and making trips back forth to the hospital was a nightmare. But by the grace of God I made it. Hated the prednisone but it was the only that got me through. Just getting over Covid my second time since last fall this time not as bad but I have no energy and last year diagnosed with Hypoglobulinemia so I now have a compromised immune system and was told they have no idea why this happened blamed it on age but I think it was from the Covid booster u had in August of last year .
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2 ReactionsI was diagnosed with PMR on Jan 25 of last year. Today, Jan 9, 2024 doc has taken me off prednisone entirely to see if Kevzara can carry the whole load. I took my last (hopefully, 2.5 prednisone) this morning. I have had 6 injections of Kevzara and his position is that the biologic is fully active in my system. Needless to say I am delighted to be off prednisone at age 82. I feel absolutely fine all things considered and really think that prednisone is in the rear view mirror while realizing that PMR is chronic and may rear up again. There are alternatives to prednisone for the long haul.
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3 ReactionsThat is a good outlook to have, I really hope prednisone is now in your past.
I have been completely off prednisone for the past 2 years. My very first dose of Actemra was January 1, 2019. My rheumatologist said Actemra was my best and perhaps only chance of ever getting off prednisone. I was on prednisone for chronic and refractory PMR for 13 years. Not only did I get off prednisone, I also was able to discontinue several other medications that were treating prednisone side effects.
My rheumatologist now says Kevzara might be another option for me if Actemra stops working.
My understanding is that PMR is only in remission while I'm still taking Actemra. My rheumatologist says PMR isn't ever going to "go away" completely but remission is the next best thing.
I'm not sure what remission is. However, my rheumatologist never thought I was in remission on prednisone because I was always symptomatic. Now I'm symptom free of PMR.
I will be going to an Actemra infusion every 5 weeks in 2024. It is the first steps taken to see if I can get off Actemra
dadcue; I know that this is long term and at 82 the side effects long term use of prednisone probably will not matter. However, my brother,79, has been on prednisone for 20 years for RA and his kidneys are shutting down. My brother-in-law, also 79 and a former long haul truck driver has also been taking prednisone for RA for 20 years and his adrenals have shut down permanently. So you have my admiration for dealing with this for more than a decade. I feel really fortunate that Kevzara was approved for PMR within week of my diagnoses and that I was able to get on it within 9 months. Now we wait to see what happens.
Stay well; John