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.

chris1466 | @chris1466 | May 20, 2020

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

ronhonn | @ronhonn | May 20, 2020

In reply to @chris1466 "I am new to this mayo clinic group but I’ve had PMR for five years. I..." + (show)

Thank you! I'm open to all possibilities!

ronhonn | @ronhonn | May 20, 2020

In reply to @ronhonn "Thank you! I'm open to all possibilities!" + (show)

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

chris1466 | @chris1466 | May 20, 2020

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

The celery juice doesn’t really fit in anywhere, I just think having some juice before starting the day is a good thing ,and for me being in remission this long I don’t want to change anything ,because things are going right.
I’m not saying that’s the answer, it just works for me the game changer was the LDN.

bcstew | @bcstew | May 21, 2020

In reply to @chris1466 "I am new to this mayo clinic group but I’ve had PMR for five years. I..." + (show)

I will definitely ask my Dr. about this low dose naltrexone but I will pass on the celery juice/ Have you had ANY side effects to the LDN?

chris1466 | @chris1466 | May 21, 2020

Started with .5 & increased every week till 4.5
Have to take it in the am cause it kept me up , but not too bad
I had very visual dreams at night for a month or so
Other than that ...no

bcstew | @bcstew | May 21, 2020

Thank you for your reply. It is good to know that you are not experiencing any bad side affects. I will certainly check it out.

katherineanne | @katherineanne | Nov 4, 2020

<p>I have had PMR for about three years. After finding the side effects of Prednisone unwelcome, I tapered off it, but still have some joint pain, stiffness, fatigue. Is polyuria an after effect of prednisone? Are there any new treatments or practices or discoveries about the cause or treatment of polymyalgia rheumatica?</p>

John, Volunteer Mentor | @johnbishop | Nov 4, 2020

In reply to @katherineanne "I have had PMR for about three years. After finding the side effects of Prednisone unwelcome,..." + (show)

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?

mikeshell | @mikeshell | Apr 26, 2022

I am newly diagnosed with PMR. I just started 20MG of Prednisone yesterday and feeling the improvement in mobility already. However, I have a history of being unable to tolerate this drug. My Rheumatologist has prescribed 20MG for the 2 weeks, then 17.5MG for 2 weeks, then moving to 15MG and slowly tapering each month. I friend of mine has mentioned I should inquire about starting IV therapy in combination or alternatively. Has anyone had experience with this approach? I'm extremely concerned about side effects of Prednisone. Thank you for your thoughts.