Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Thank you. I assume you are American? Wonder if I could have it sent to Canada. Also wondering how to get around my rheumatologist, who gets even stiffer and colder when I utter the letters LDN…maybe I will keep gathering testimonials like yours.

Yes, I am in Maine. Your rheumatologist is ignorant, obviously, about LDN and seems defensive. Not a good trait in a doctor!
If he or she could read this, it might help.
https://link.springer.com/article/10.1007/s10067-014-2517-2
Perhaps you will find help here: https://livewellhc.ca/low-dose-naltrexone/
They offer telemedicine appointments. Good luck!

I have only just been diagnosed with PMR and wondering if any one has had acupuncture instead of steroids?

About 18 months ago, I started having massive pain in my shoulders and hips. I’m retired now, but I worked in a very physical job all my life, so I’m used to aches and pains. I saw my Dr, who sent me to an orthopedist and he sent me to a neurologist. 5 MRIs later I was told to do physical therapy, which made things so much worse. None of my Docs would RX pain medication, but my neurologist sent me to a pain management clinic where I was RX a massive amount of meds. I was supposed to take 10 mg of percoset 4 times a day but I was so frightened of addiction, I only took it when I needed to get out of bed. Along with the percoset I has muscle relaxers, anti depressants and medication for nerve pain, about 12 pills a day. Basically, I was in bed for a year, never leaving the house unless it was to go to the Doc.

Well, at the pain management clinic, I pretty much threw a hissy fit when RXed more opioids so the PA called in a doctor I’ve never seen before. He listened to me and my husband, left the room and when he came back with his computer, he was very silent. Then he called another Dr. (A rheumatologist) and made an appointment for me for the next day. My rheumatologist (I love her) told me to start on 20 mg of prednisone after I went for a blood test and come back to see her in 2 weeks.

Once I started on the prednisone EVERY bit of pain was GONE! I was elated! I’ve been on prednisone now for about 3 months and I feel like I have my life back, but I’m very weak after losing 60 lbs and not moving much for a full year. I was so happy to find out I had a disease! Imagine that!

I am so grateful for the doctor that sent me to a rheumatologist and for the rheumatologist herself for LISTENING to me. But, I’ve very angry at the other army of doctors I saw that did nothing.

I’ve been slowly decreasing the prednisone on my rheumatologist’s advice. 2 weeks ago I went from 10mg to 9mg and I’m starting to get achy again. But I’m seeing great recommendations on this forum. I’m so happy I found you all.

Bookmarking this. It’ll be interesting to see the replies.

I was already going to acupuncture regularly when dx w PMR for another inflammatory condition. The only relief it provided was to help with fatigue. For my other condition I had many improvements.

Interesting stats published by NIH: "The median duration of therapy was 37.3 months. It was estimated that 40 percent of patients will require therapy longer than four years. Corticosteroids were permanently discontinued in 31 patients after a mean of 23.7 months of therapy. The data support the concept of two patient populations--one with limited disease and another requiring long-term therapy."
There's more at https://pubmed.ncbi.nlm.nih.gov/4036982/
This is from 1985 but PMR is PMR, I believe.

This study from the UK is more recent. It has a large sample size and is well done. This study says the following:
"The median (IQR) continuous GC treatment duration was 15.8 (7.9-31.2) months. However, around 25% of patients received more than 4 years in total of GC therapy."
https://pubmed.ncbi.nlm.nih.gov/30297332/
I believe there are people who have PMR a relatively short period of time and people who have PMR a long time.

I was on continuous prednisone treatment more than 12 years for PMR. I would still be taking prednisone except a biologic was tried. After a biologic was started, I was able to taper off prednisone in less than a year. I consider myself lucky to have been able to taper off prednisone after such a long time at an average dose close to 20 mg. More targeted treatments for PMR are warranted for people who need prednisone for a long time and are on higher prednisone doses.

There is also the problem with adrenal suppression as the following study suggests.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
It sometimes takes a year or more for adrenal function to improve after long term treatment with prednisone. In some cases adrenal insufficiency is long lasting and sometimes is permanent. These people require a maintenance dose of prednisone. When adrenal insufficiency is permanent, people are never able to taper off corticosteroids.

I was diagnosed with PMR in January of this year. My prednisone dose has been increased a few times and is now at 20 mg. The problem is that the greater the dose, the worse I feel mentally and with respect to increased fatigue. Has anyone else had this happen?

Interesting. Thank you for sharing this.