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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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When my Rheumatologist put me on methotrexate he also added folic acid daily. No side effects. But I have a pharmacology friend who suggested I get ban anti nausea Rx just in case. Good luck & prayers
I haven't tried this yet but I have been looking into Yoga. @tsc recommended this video in another discussion and may have some other suggestions.
-- Dr. Fishman's Method - 12 Poses vs Osteporosis:
https://youtu.be/o8SjystaH-E
Hi @johnbishop and @vandyms1974, there's more information about the study on these yoga poses and bone density at http://www.sciataca.org There is also another set of poses that people who are enrolled in the current study can access, (those not enrolled can access for a small charge). I'll probably check those out eventually so I can combine those poses with the ones above. I started with the poses for osteoporosis, then worked through the osteopenia variations and now do the regular poses, with some modifications. I've missed one day since June 1.
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2 ReactionsMy rheummy insists my PMR is under control with the 8 mg of methyl prenissolone I am taking and according to how my arms feel, he is right. My legs, however tell a different story. There is the trochantor bursistis that I can't quite lick and my muscles feel so stiff, I can't think what else it could be. And then there are the veins in my legs that spontaneously closed off. What's up with that?! Sometime about a year ago, the docs figured. They had no idea why and no idea what to do about it. I've had good luck with the anti-inflamatories, so I am going to add some more to my regimen. To my MSM and LDN, I am going to add alpha Lopeic Acid and Boswelia. I think every one should at least try the MSM. I think it has real uses for us and no toxic effects. Certainly worth a try. I'll let you know how the others go. PMR is not going to get the best of this chick. No sir.
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1 ReactionWow...was just waiting for someone else to say it all started AFTER I got my Covid booster...so unhappy I ever consented to getting the vaccines now. I started beginning of March on 20mg of the Predisone and am currently down to 5mg a day. Like you said just keep praying I can get off this merri go round. Good luck
Welcome @shalleenkm55, My PMR is in remission but I've had both Pfizer vaccines and the first booster with no PMR flare ups. It's good to hear you are down to 5mg a day prednisone. I'm wondering if you might find the following discussion helpful:
-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
Is the prednisone keeping the PMR pain in control?
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1 ReactionI love how you write! I too had the exact same experience with prednisone in terms of my PMR diagnosis. I felt like I was on speed and had no pain or stiffness. I cleaned my house top to bottom and could not get to sleep. Just wanted to enjoy the moment of freedom from disability and pain. Like a blind man seeing the beautiful countryside after being blind all their life. Then hell broke loose when my prednisone was decreased down to 20 mg a day. Stiffness and pain returned in both legs and hips, fatigue and depression returned. My doctor threw his hands up and said he could do nothing more. I now have a compression fracture plus five (5) bulging discs so I am really in pain. Cortisone thins the bone so wondering if I am just paying the price for those two months of bliss.
I have been on Prednisone 15 mg since July when my Dr. was finally able to figure out my issue. I too thought I was getting older with all my aches and pains. We did an e consult with a Rheumatologist and she agreed with the PMR dx after looking at all the lab results and symptoms I am having. I have an appt to see her but not until March.
I have also been Dx with MGUS and they did a total body X-ray and found 1 5mm lesion on my skull bone. That has led me to a bone marrow bx so I’m waiting for those results so we can make a plan. I have been poked and prodded for 6 months so I am so ready to make a plan and get healthy again.
After I have had Covid and flu vaccines I seem to have a flare in pain symptoms. That makes sense as they are to given to give an immune response to the disease. I think taking the vaccines out ways the increase in pain for a few weeks to be protected. Nock on wood, no illness. I mask when I’m shopping in a places where there are alot of people. Wash grocery cart handle and hands etc. I felt more pain for the last couple months after getting vaccines but now things have calmed down again so I am hoping to start tapering here soon. Didn’t report the increased pain to my Dr as she may have increased the prednisone and I think 15 mg is enough and didn’t want more prednisone sx.
I watch my diet as far as sugar intake, wt and BP as prednisone can affect those things. I exercise 15-30 minutes a day depending upon my pain. I walk in the house (live in mN) and do upper body exercises. This helps my sugar, BP, wt and pain also.
Less pain once I start exercising so will continue to do that.
I don’t take any meds/supplements unless my pharmacist and dr. know and agree. Taking too much of anything is not good and can affect other body systems.
PMR is the pits and MGUS has its own course that may or may not progress to something else.
Why me? I keep asking that question. I don’t drink, smoke and have tried to live a clean life.
All I can do is listen to the experts, do my own research on REPUTABLE sites and make as much of an informed decision as I can.
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6 ReactionsWell the only thing I can add to help you because it helped my husband is for you to get on supplements to take down inflammation.
Of course, you have to have an organic healthy diet with lots of greens. Low on carbs. No sugar.
Talk to a naturalist Doctor who can help directed towards;
Omega 3’s
Vitamin D3 with K2
Calcium
Magnesium is incredible for pain due to the muscles.
Taking these have really helped him! I hope they do too you! 🙏🏻
My rheumatologist put me on hydroxychloroquine to prevent PMR flare ups. So far so good.