1. < Polymyalgia Rheumatica (PMR)

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.

DadCue | @dadcue | Jun 11, 2023
In reply to @grammy82 "I just wanted to comment briefly. We have a limited number of guides in investigating an..." + (show)
@grammy82

I just wanted to comment briefly. We have a limited number of guides in investigating an autoimmune disease. Our CRP/ESR levels are an excellent measure of inflammation, although it is essential to remember a patient can have an AI with normal CRP/ESR levels.
My rheumatologist also checks my liver enzymes since I have been on the weekly injection pen for three years...with a short break because of cellulitis.
I have had no experience with IV Actemra. I'm sure I'll be on the weekly pen for some time. IF I ever went bi-weekly, once again, my CRP/ESR would be useful.

Somehow, I don't see that in my foggy crystal ball~!💞

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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?"

REPLY
trimomlewis | @trimomlewis | Sep 11, 2023
In reply to @johnbishop "Hello @katherineanne, You will notice that we changed the title of your discussion to provide a..." + (show)
@johnbishop

Hello @katherineanne, You will notice that we changed the title of your discussion to provide a little more information related to your questions to hopefully bring more members into the discussion. Your question is polyuria an after effect of prednisone hasn't been my experience in my two occurrences of PMR which has been in remission for the second time for about 2+ years...other than my sleep interrupted old man trips to the bathroom.

I did find some interesting information that mentions your symptoms and a potential link to diabetes -- Excerpt from article below - "Prednisolone had been discontinued 3 years prior to his current presentation. ... He complained of polyuria and polydipsia. ... Neurosarcoid, by causing both ACTH and ADH deficiency is one of the few conditions where the ADH deficiency is ..."
- Unmasking of diabetes insipidus with steroid treatment: https://www.endocrine-abstracts.org/ea/0015/ea0015p227

I am not aware of any new treatments for Polymyalgia Rheumatica (PMR). Here is an article from 2015 that discusses latest advances - Latest Advances in the Diagnosis and Treatment of Polymyalgia Rheumatica: https://www.practicalpainmanagement.com/pain/myofascial/inflammatory-arthritis/latest-advances-diagnosis-treatment-polymyalgia-rheumatica

I don't think there is a cure for it but after my first bout with PMR and while I was searching for information on another condition I have, small fiber peripheral neuropathy, I ran across a book by Dr. Terry Wahls - The Wahls Protocol. It put me on to eating healthier and the possibility that in itself can help with autoimmune conditions. Here's her story which prompted me to change my lifestyle - https://terrywahls.com/about/about-terry-wahls/

I try to exercise daily along with eliminating most processed foods and fast foods to help with my PMR like symptoms which I still have - morning aches and pains like a lot of the older generation 😊 Have you made any lifestyle changes to try and help with the pain, stiffness and fatigue?

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Thanks 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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sunshine4u | @sunshine4u | Sep 12, 2023
In reply to @chris1466 "I am new to this mayo clinic group but I’ve had PMR for five years. I..." + (show)
@chris1466

I am new to this mayo clinic group but I’ve had PMR for five years. I am 67 years old and every nine months I would come off the prednisone and then it would come back within 6 to 8 weeks
Then I would start the whole prednisone thing again for another nine months off a couple of months and then it would return

My doctor had me try low-dose naltrexone
I have it compounded and I have been off prednisone and in remission for 7 Months

I take 4.5 LDN daily and drink celery juice 3 to 4 times a week when I can find it organic.

I don’t know if this is something you would like to consider but do some research on the LDN

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Thanks 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.

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2 replies
sunshine4u | @sunshine4u | Sep 12, 2023
In reply to @ronhonn "Oh! Where does the celery juice fit in? This is interesting, and I'm open to anything..." + (show)
@ronhonn

Oh! Where does the celery juice fit in? This is interesting, and I'm open to anything that will help.

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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.

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marymckeith | @marymckeith | Sep 12, 2023
In reply to @sunshine4u "Thanks for sharing. I will definitely ask my doctor. I was diagnosed 3 months ago, but..." + (show)
@sunshine4u

Thanks 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.

Jump to this post

Did you go back up to 20? I am trying to hold off but I was on 20 longer than you.

REPLY
nyxygirl | @nyxygirl | Sep 14, 2023
In reply to @sunshine4u "Thanks for sharing. I will definitely ask my doctor. I was diagnosed 3 months ago, but..." + (show)
@sunshine4u

Thanks 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.

Jump to this post

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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West Virginia 1954 | @wv54 | Oct 4, 2023

A 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

REPLY
3 replies
bradninchgirl | @bradninchgirl | Oct 5, 2023
In reply to @wv54 "A year or more ago -- PMR victim here - Over a year ago I was..." + (show)
@wv54

A 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

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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..

REPLY
1 reply
West Virginia 1954 | @wv54 | Oct 5, 2023
In reply to @bradninchgirl "Now into my 4th year with PMR and now on 1mg. I get pain in my..." + (show)
@bradninchgirl

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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I'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 ??

REPLY
edinnola | @edinnola | Oct 5, 2023
In reply to @wv54 "A year or more ago -- PMR victim here - Over a year ago I was..." + (show)
@wv54

A 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

Jump to this post

When 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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