Successfully treated for Polymyalgia Rheumatica

Posted by mach92 @mach92, May 4, 2017

Please allow me to introduce myself.......I am a retired 62 year old male, in Stage B heart failure and diagnosed with PMR in October 2015. Because of my occupation, I was required to have physicals every 6 months and EKG's every year after the age of 40. For 40 years I was active, jogged 15-20 miles per week, watched my diet, BP was mostly normal, cholesterol normal, weight normal....basically in very good shape. August 2012 I had a stent placed in my LAD and at that time they discovered I had had a heart attack sometime in the prior 10 months (the time since my last physical and EKG). I was shocked. BTW, I was jogging the day before they implanted the stent with NO symptoms. A story for the cardiac board.......

Fast forward to the fall of 2014......when waking in the morning, I was experiencing full body aches and pains. I told my wife it felt like somebody beat me with a baseball bat. The symptoms did get somewhat better during the day; however, I found it getting more difficult working out AND recovering from a workout. I could never recover....the aches, pains, fatigue and stiffness never went away. I thought it was cardiac related. Explained the symptoms to my cardiologist, he said it could be because of a weakened heart plus medications. I was taking Lisinopril and Bystolic. He thought changing the beta blocker would provide some relief.......it didn't. After heart echo's, MUGA tests and a cardiac MRI, it was determined my heart condition wasn't the cause of my aches, stiffness and pains. BTW, I did consult with my PCP throughout this whole process. All my blood work came back normal. No signs of trouble...period. He didn't have an answer other than "watch your diet and get more exercise"! I told him in the most polite manor I could "Doc, I've been doing that for 40 years!!". He said maybe I should see a rheumatologist.

October 2015 I saw a rheumatologist and although all my blood test came normal, based on my symptoms he diagnosed me with PMR. BTW, by this time I was in pretty bad shape. Couldn't do any type of exercise, even hated waking up at night or in the morning because the pain was so bad. He place me on 15mg of Prednisone and said I should start feeling better in 4-5 days. I filled the script and took the first dose in the car!

Upon waking the next morning, I laid there in total disbelief......there was NO pain. I actually had to pinch myself, thought I was dreaming. I couldn't believe how good I felt. Hadn't felt that good in a long time. Finally I had an answer.

Since the initial dose, my rheumatologist has tried to wean me off the Prednisone with little success. I did get down to 2.5mg's last month, but unfortunately had a relapse ironically while visiting the Rochester Mayo Clinic for a cardiac and PMR evaluation. Although I've never had any side effects, I did not like taking the Prednisone....don't ask me why, could be the fact that it does shut down the adrenal glands! The Mayo rheumatologist did put my mind at ease by explaining he's had patients on much higher doses for over 6 years and never NOT had adrenal glands recover. He recommended I increase my Prednisone to 10mg per day. I did and it did help somewhat, but I did not recover 100%. Three days ago, my rheumatologist increased it to 15mg and today I am finally feeling better. I'll stay on this dose for 3-4 weeks and slowly begin the weaning off process all over again.

Sorry for the long post, but hope this will help others who may be struggling with this disease and treatment plan. BTW, I have read many posts on this board regarding PMR and appreciate the input from so many on this disease and their personal experiences. I hope my experience has help as well.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@daenika87

I have had the diagnosis of PMR for 10 months now and I’m dealing with SEVERE weakness/fatigue. I still have stiffness and some pain but the fatigue is debilitating. I’m on 5mg of prednisone and just started Methotrexate two weeks ago and don’t feel that it’s helping yet. ANY SUGGESTIONS?

Jump to this post

I noticed you mentioned in a different post that you're also taking methotrexate and soon to start injections. What injections will those be?

I don't have experience with the other medications for PMR, but echoing @johnbishop, that does sound like a relatively fast taper... My dad has PMR and if he is experiencing severe weakness and fatigue, it's a sure sign (given this has happened so many times over the last 14 months since diagnosis) he's having a flare and his prednisone dose was dropped too low.

He was diagnosed and started prednisone in May 2022, and his current prednisone dose is 6.25 mg. He takes LDN (low dose naltrexone) for fatigue, does daily gentle range of motion exercises, has done PT, and also meets with a therapist regularly. They practice relaxation techniques (i.e. breath practice).

REPLY
@edwardh

No, I think it is the price of too quick a taper for me. I do have more energy since upping the dose of Prednisone but still have muscle weakness and soreness.

Jump to this post

Ok.... I did feel better on 10mg. If the methotrexate doesn't start to help I'll ask my doctor to increase prednisone.😣

REPLY

Has anyone tried Kevzara? It's an injectable and it's been newly approved for use with PMR.

REPLY
@daenika87

Has anyone tried Kevzara? It's an injectable and it's been newly approved for use with PMR.

Jump to this post

Hi @daenika87, There are a couple of discussions on Kevzara for PMR that you might find helpful.

--- Has anyone heard this news about Kevzara approved for PMR?: https://connect.mayoclinic.org/discussion/has-anyone-heard-this-news-about-kevzara-approved-for-pmr/
--- PMR & Kevzara: https://connect.mayoclinic.org/discussion/pmr-kevzara/
--- PMR treatment w Kevzara: https://connect.mayoclinic.org/discussion/pmr-treatment-w-kevzara/

REPLY
@emo

I noticed you mentioned in a different post that you're also taking methotrexate and soon to start injections. What injections will those be?

I don't have experience with the other medications for PMR, but echoing @johnbishop, that does sound like a relatively fast taper... My dad has PMR and if he is experiencing severe weakness and fatigue, it's a sure sign (given this has happened so many times over the last 14 months since diagnosis) he's having a flare and his prednisone dose was dropped too low.

He was diagnosed and started prednisone in May 2022, and his current prednisone dose is 6.25 mg. He takes LDN (low dose naltrexone) for fatigue, does daily gentle range of motion exercises, has done PT, and also meets with a therapist regularly. They practice relaxation techniques (i.e. breath practice).

Jump to this post

Kevzara

REPLY
In reply to @daenika87 "Kevzara" + (show)
@daenika87

I hope it helps! With the recent approvals of biologics for PMR I wonder if it will be more common to treat it with biologics as opposed to long term prednisone, as it is with other inflammatory conditions… If only it were easier and more reliable to get insurance to cover them for more people. Wishing you all the best.

REPLY
@emo

My father has PMR and I have a different inflammatory arthritis along with other chronic pain conditions. He gets debilitating fatigue from PMR flares. We've both been taking low dose naltrexone (LDN) for fatigue.

It's a little off the beaten track and harder to obtain, but I thought I'd mention it. It's by prescription from a compounding pharmacy because it's a fraction of the regular doses of naltrexone. By micro-dosing it, research has found that it seems to increase the amount of endorphins and regulate glial cells (which when overactive contribute to chronic pain).

It's been used for years off-label for chronic pain and fatigue, fibromyalgia, as well as some autoimmune conditions. But it seems to me it's gaining more traction because people are looking at it for use in long COVID.

It can be difficult to get an RX for it because many providers aren't aware of it unless they're working a lot with chronic pain patients (in my experience), but it was worth it. I can't vouch for if it's improved my chronic pain, but I know it's helped my fatigue. It helps my dad as well; or at least he thinks it does.

Oh, another huge plus: Very low risk of side effects.

Jump to this post

I have been taking LDN for 5 months. I hope that eventually it will help me wean off prednisone, but for now it does seem to give energy (and has beaten my peripheral neuropathy and sciatica, too). The other thing is to be active as much as you can. Once you get going, it seems some energy flows, at least that's what I find.

REPLY
@daenika87

Have you found anything that helps the exhaustion? The exhaustion is as debilitating as the pain...😢😖🥴😵‍💫

Jump to this post

Yes, the exhaustion is so debilitating. Also worry about hearing loss and other side effects.

REPLY

Though I am often tired and/or sleepy, the extreme fatigue has to a great extent disappeared.

I’m 88, assisted living, on 4mg
(Down from 20mg) six years since
diagnosis, no remission .

Daily I crash about 7pm with pain and exhaustion. I take CBD 10mg and THC 5mg and get into bed with an ice pack under my neck and shoulders.
I then read or watch TV for an hour or so. Best to delay the THC till then as it promotes a deep sleep usually dreamless.

Have not experienced chronic fatigue syndrome for several months.

Be sure to confirm the legality of
THC and CBD in your state.

REPLY

Ps: the ICE PACK is very effective relief very quickly

REPLY
Please sign in or register to post a reply.