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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 don't have a crystal ball foggy or clear. I just know what is working for me. I don't pretend to know what will work for anyone else.
That is exactly the point about CRP/ESR. Some sources say people have to be elevated inflammation markers in order to have PMR ... I don't know about GCA. Other sources say no ... people can have PMR and still have normal inflammation markers. I believe the latter but who knows for sure?
My inflammation markers sometimes squeaked into the normal range when I was taking prednisone. Most of the time they were higher than normal but what is "normal?"
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1 ReactionThanks John about the info on Dr. Terry Wahls. A friend who had MS told me about her about 15 years ago. Since then, her protocol has been researched by others for Parkinson’s, Alzheimer’s, ALS and other degenerative diseases showing pretty amazing results. I’d like to see more research into the triggers (like nutrition?) and genetics behind PMR. It’s demoralizing to not know what to do to avoid it, especially the relapses.
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1 ReactionThanks for sharing. I will definitely ask my doctor. I was diagnosed 3 months ago, but pretty sure I had it much longer. I just thought it was my RA flaring up, which I also have as well as osteo arthritis. Each one requires different exercises so am still trying to figure out what I can do that doesn't have a reaction to any of them. So far, it seems swimming is the best, but have to still be careful not to do too much. Started on 20MG prednisone, 2 months later reduced to 17.5. Not helping as much but trying not to go back up to 20. Pain in the mornings is really bad.
Celery juice is supposed to help reduce arthritis pain - I used to do it more often. I may try doing it 3-4 times a week again and see if it helps.
Did you go back up to 20? I am trying to hold off but I was on 20 longer than you.
If you still have pain in the morning i think you should consult with your Rheumatologist and increase to 30 mg ! That is what i had to do -- experiencing the miracle dose that completely rids you of morning pain and stiffness was amazing . Now i have tapered to 9 mg/day ! If you have RA AND PMR - perhaps you are a candidate for Kevzara ?
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1 ReactionA year or more ago -- PMR victim here - Over a year ago I was coming off slowly to find the lowest dosage of Prednisone - I am now going on my 3 rheumatologist - the first 2 moved on after about a year / +. I get a letter that another one left on 9/21. I am down to 2 mg's of Prednisone a day and 6 Methotrexate every Monday. For over a year, my thighs are in so much pain -- not the hips -- the thighs. I have little strength and depending on what I do the day before will dictate the next day movement. Is there something other than Prednisone ?? I'm also thinking about traveling to another rheumatologist -- Alive and dragging both legs -- sincerely West Virginia
Now into my 4th year with PMR and now on 1mg. I get pain in my outside thigh muscles and weakness but I hadn't associated it with Prednisone. having just decreased my Prednisone level it doesn't seem to have made any change to this. It seems to get a little better if I force myself to eat green leafy vegetables, which I hate. I top them generously with grated cheese to take away the taste, but it's worth it as it really did seem to make a difference. At 80 I find my appetite is decreasing and it makes getting adequate nutrition difficult, especially as all my favorite foods are on the "do not eat" list..
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3 ReactionsI'm at the same place with the outside thigh pain / weakness -- 3rd year plus since PMR showed up. Going on 3 rheumatoid specialists - down to 2 mg Prednisone daily -- The outside thigh pain is miserable ----- I'll try the green leafy things ------- A little I have thought about -- before the PMR showed up, I had some leg calf problems. Test showed blockages behind the knee, Vascular surgeon cleaned out the blockages -- it wasn't long after that PMR arrived with vengeance ??
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1 ReactionWhen PMR first hit me, both my hamstrings frayed/tore. In some literature thighs were "marked" as possible spots. Hang in there. I also use CBD & Delta 9 gummies (over the counter), and it helps me with the pain.
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