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.

John, Volunteer Mentor | @johnbishop | Dec 24, 2023

In reply to @600dave600 "I would like to find out what other foods, supplements, vitamins,and medicines are better than Prednisone...." + (show)

Welcome @600dave600, I did start eating a better during my second experience with PMR and it helped me get off of prednisone sooner than my first time around with PMR. Here's some information on the topic that you might find helpful:
--- Diet and Supplements for Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/diet-and-supplements-polymyalgia-rheumatica-pmr

There are also a couple of discussions you might find helpful:
--- PMR Diet: Foods to eat and avoid: https://connect.mayoclinic.org/discussion/diet-and-pmr/
--- Diet & PMR.: https://connect.mayoclinic.org/discussion/diet-pmr/.
--- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/.

Have you discussed alternatives with your doctor to see if they might have some suggestions?

pete555947 | @pete555947 | Dec 26, 2023

I am 81 years old and had a stroke in October 2022 and was diagnosed with PMR about 6 weeks ago. I started with 10mg prednisone and an now tapering to 7.5mg then 6mg in January. Prednisone has worked great I always take after eating but just recently I have had an aching stomach after taking a dose. I'm trying to drink more water and that helps a little. I have never had any problem with my stomach no matter what I took. Has anyone had a similar problem? If so did you find anything that helps?

John, Volunteer Mentor | @johnbishop | Dec 27, 2023

In reply to @pete555947 "I am 81 years old and had a stroke in October 2022 and was diagnosed with..." + (show)

Hi @pete555947 - I haven't had the stomach issue after taking prednisone but I'm pretty sure you are not alone. You mentioned taking the dose after eating. Have you tried to take the dose while you are eating along with the food?

trailrider | @trailrider | Dec 27, 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?

Jump to this post

Thanks John. Found the article regarding latest advances very informative. I’ve essentially been in remission for over a year now and completely off the prednisone. I do experience some leg weakness and minor shoulder discomfort but not enough to consider starting another prednisone cycle. (69 years old). As some have questioned…PMR or simply old age?

edayvonne | @edayvonne | Dec 27, 2023

In reply to @pete555947 "I am 81 years old and had a stroke in October 2022 and was diagnosed with..." + (show)

My Dr gave me Lansopril to take 30 mins to an hour before taking Prednisone as it lines your stomach to stop getting any side effects from the steroids. I’ve been on 15mg weaned down to 4mg but struggling on 4mg now have stiffness and pain in hands and wrists. Not sure if this is all part of PMR or something else.

pete555947 | @pete555947 | Dec 27, 2023

In reply to @edayvonne "My Dr gave me Lansopril to take 30 mins to an hour before taking Prednisone as..." + (show)

Thanks for your comments. I will pose your suggestion to my Dr. My PMR started with pain and weakness in my right thumb and within 24 hours spread to my whole right hand along with right arm and overall body weakness. Then my Dr. put me on 10mg Prednisone which made everything better.

pete555947 | @pete555947 | Dec 27, 2023

In reply to @johnbishop "Hi @pete555947 - I haven't had the stomach issue after taking prednisone but I'm pretty sure..." + (show)

Thanks for your comments. I have tried that the last couple of days and it stopped the immediate ache but now a few hours later the ache is coming back.

aboucat66 | @aboucat66 | Dec 29, 2023

In reply to @shalleenkm55 "Wow...was just waiting for someone else to say it all started AFTER I got my Covid..." + (show)

Same here
Symptoms slowly got worse after vaccines and contracting actual Covid. I had never felt such muscle pain as I did when I got covid and the fatigue. Went along for a while thinking I was just getting over the covid. After almost a year of my entire life being awful with pain I finally was diagnosed by my GP by accident when given steroids for sinus infection. Didn't help sinus but mercy the pain just disappeared. Have seen a Rheumatologist and she wants me to start on Methotrexate. Scared of meds and don't understand why we can't do steroids for awhile. Anyway will be seeing her in 2 weeks and will discuss why and ask more questions. I'm 66 and have bone density of a normal 27 year old so don't see why no steroids. Anyway thank you to all in this group. It is very helpful to not be alone.

John, Volunteer Mentor | @johnbishop | Dec 29, 2023

In reply to @aboucat66 "Same here Symptoms slowly got worse after vaccines and contracting actual Covid. I had never felt..." + (show)

Hello @aboucat66, I thought I would pop in and welcome you to Connect while you wait to hear from @shalleenkm55. I've had two occurrences of PMR but fortunately it's in remission now. I think asking questions is a great approach to dealing with the symptoms of PMR. You might find a post by another member helpful for learning more.

Disease stratification in GCA and PMR: state of the art and future perspectives - Document shared by @nyxygirl https://connect.mayoclinic.org/comment/959353/.

I also like to ask questions at upcoming appointments but sometimes forget so I've started writing them down and taking them with me. Do you write down your questions and take them with you to your appointments?

shalleenkm | @shalleenkm55 | Dec 29, 2023

In reply to @aboucat66 "Same here Symptoms slowly got worse after vaccines and contracting actual Covid. I had never felt..." + (show)

Well....I stayed on the steroids for over a year tapering down but after that the pain is still there pretty much 24/7. The unfortunate part is I don't want to be on steroids the rest of my life. Now at the 68 year mark, I have tried naturopathy docs, juicing and now am trying Lifewave patches. Not sure if they are helping but do some research on your own. Heck no matter if it does not work, it certainly will not hurt! Good luck....best, Shalleen

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