I’m just wondering how old most of you are with PMR

I am 82 and diagnosed in early January 2025 after approximately 6 months of symtptoms and "I don't know what's wrong with you," and "we'll try to get you a referral with a rheumatologist," GP pronouncements.

73 when first symptoms. Diagnosed at 74. Started at 5mg. with GP and was not enough. Saw the Rheumatologist 2 mos. later and was bumped to 10mg. Have been tapering and will drop to 4mg. tomorrow. Has been 9mos. total. Good luck to all.

I'm 71, but was diagnosed when I was 58.

Are you still taking prednisone?

I was diagnosed with PMR and possible GCA at 68 yo in July 2024. Was on 60 mg. of prednisone for about 6 weeks. During that time I experienced labored breathing and chest pains that felt like an elephant on my chest. I had an EKG and echocardiogram. Nothing out of the ordinary was found. The 60 mg. treated my aches and pains, but I still had headaches. I had an MRA with contrast done on my brain. It indicated some vasculitis. I honestly think those symptoms were due to the Prednisone. As I reduced my Prednisone dosage, my side effects disappeared.

My attitude has been pretty chill throughout this whole journey. I don't get stressed out over things I have no control over and PMR is one of those things. I don't like it, but it is what it is. Good luck.

I’m 58, but was diagnosed with PMR at 57 by a rheumatologist. I started on 20 mg of prednisone and have tapered to 2 mg. After 5 months, Kevzara enabled me to go lower than 10 mg, which was my prior floor.

I am 78 yr and was diagnosed in Dec 2023. Woke up one morning with severe pain in my shoulders, arms and neck. Couldn't lift my arms. PCP didn’t know what it was and sent me to the ER. ER doc diagnosed it as PMR, gave me 20 mg.of prednisone and sent me home. Next morning woke up, no pain. Now I'm able to stop taking the prednisone minor to no pain in the morning. Took this long to taper down to 0mg. I am blessed!

So what are you using now? Anything? I couldn’t stand that pain any longer. I am very slowly trying to titrate down the methotrexate.

I was 66 when I woke up one day with severe pain in my shoulders in Nov 2023. I was initially diagnosed with frozen shoulder. 3 months of physical therapy helped me to lift my arms again. After the spring, the pain returned and extended to my hips and groin area. I then had cortisone shots in my shoulders and lower back over 3 months which helped. The pain returned in late summer and I was diagnosed with PMR confirmed with CRP of 35 and Sed rate of 48. I started 20mg prednisone but had terrible insomnia and anxiety. I tapered off after a month based on instructions from my rheumatologist. I found out about low dose naltexone from a friend and talked to my rheumatologist about it. She was skeptical but agreed to prescribe 4.5mg ldn. You need to start lower and work up to 4.5mg over a month or so. I stopped the prednisone on 12/31/24 and started the ldn on 1/4/25. It can take months for the ldn to have an impact, but my CRP and SED rate were in normal range in early March. My pain has gone from 8 to 0-2 but I do take 1 or 2 Aleve on most days due to severe arthritis in my back and knees that I had prior to PMR. If interested in finding out about LDN, you can google about it and check the topic on the Mayo Clinic. I get my LDN at a compounding pharmacy and pay $98 for a 3 month supply. Good luck on your journey and know things will get better.

I’m 76 and started with symptoms July/august 2024. Saw rheumy end of Oct 2024 and was put on prednisone (20mg) and tapering ever since. Now on 4mg but never been without some pain 5/6 mostly in the mornings and better in the afternoons and evenings. Re: shortness of breath/heart palpitations. On my own I bought liquid IV but diluting it a lot, (thinking maybe that has to do with dehydration) and trying gluten free bc prednisone increases blood sugar. All the information I’ve researched suggests altering one’s diet. My A1C went from 5.8 to 6.4 after I started prednisone. The palpitations are better since I’m staying away from wheat products and maybe bc I’ve decreased prednisone. Dunno.