Where have you experienced pain due to PMR?H

Welcome @23amy, I think you might find this discussion started by @dadcue helpful for learning more about PMR.
-- Comprehensive Overview Of PMR: https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/

You mentioned being diagnosed last year. Were you started on prednisone or other treatment? Did it provide relief for your symptoms?

I was prescribed 20mg prednisone & Kevzara. Yes it helped but I went from 175lbs to 196lbs. I tapered down to 5mg but had to increase to 10mg due to flare ups.

My pain from PMR goes into my calves, all the way up the back of my legs, up to my waist and then into my arms, and across my back and shoulders. It can be so painful that I can't bend down to pick up anything off the floor. When I was first diagnosed with PMR, it was after I woke up and was in so much pain, I couldn't get out of bed, nor walk unassisted and my husband had to dress me so we could go to emergency. It's been 3 months now and (thank God) I haven't had a fare up in weeks. I'm slowly trying to decrease my daily dosage with the help of my doctor. I want to be optimistic but I know this will take time and that I may have to deal with it for years to come. But never give up!

Hi @23amy, I had PMR then GCA, not diagnosed for a year. With PMR, I had pain on a scale of 12 out of 10 and stiiffness from the neck down. I felt like the Tin Man in the Wizard of Oz. I lost my appetite and had extreme fatigue. The backs of my knees were inredibly stiff and no amount of exercise helped. If I could manage to use a foam roller, I got some tingling.
With GCA, I had a sore scalp, shooting short pains from my ear to my nose, an itchy torso and dry cough, no appetite, extreme fatigue, and three incidents of visual disturbance. I also had gagging attacks for a while.
Ugh, no fun at all, I consider it the experience of a lifetime.

My pain was in my shoulders, arms and neck. Couldn't lift my arms. In remission now.

When I was first diagnosed (July 2024), I had severe pain from my hips to my knees. I felt like I did too many squats at the gym! The last 3-4 months, I have wrist pain in the morning. Occasionally, it lasted throughout the day. The wrist pain is subsiding (I'm down to 6 mg.) I still have some pain behind my right knee. I also started monthly Actemra infusions in January. I truly believe that it has helped me taper down without any flares. I also have my energy back.

When I was stepping down (from 60 mg.) my Prednisone, I had chest pains and headaches, that couldn't be attributed to anything physically wrong with me. I'm blaming it on the pred.

Can you tell me more about your sore scalp?
This was my first symptom. I had a tender scalp about 6 months before flare up of PMR and diagnosed with then. Docs seem to ignore my sore scalp. I asked my hair dresser t check my scalp and she didn't see anything. I had a Right temporal artery biopsy which was negative, however, this doesn't seem to be a very conclusive test. I have head pain off and on. Again, docs don't seem concerned.

Just curious if you were on prednisone and if so, how long did it take for you to go into remission? I’ve been told that it could be anywhere from a year to two years to be on prednisone. I feel like my PMR is a very mild case because I was started at a very low dose of 4 mg of prednisone and that worked for me. It immediately took my pain away. I’ve been pain free and I’ve been on prednisone since December. I just started tapering down slowly and continue to be pain-free. I’ve dropped the 4mg completely and I am now teetering between 2mg and 3 mg right now, mostly 2 mg with a 3 mg thrown in every now and then. I haven’t had any pain and I’ve been doing this taper for a couple of weeks now. I see my rheumatologist next week and then I will begin to taper from 2 mg to 1 mg and drop the 3mg completely. I’m wondering if I could already be in remission even though it’s only been five months. I’m wondering if this diagnosis is even the right one for me. I never had to go above 4 mg of prednisone and everything. I read from others, everyone has started at such a high dose and then tapered down. I’ve never had to go above 4 mg to control my pain.

Hi @jasharum, my scalp was tender to the touch. I didn't notice it until I touched it with my fingers. This happened both times I had GCA - initially, and with a relapse a year later.

Are you being treated by a Rheumatologist? Currently on Prednisone?

A doctor friend told me if I ever had visual disturbance to go to an Emergency Room immediately. This was after I had three incidents of brief vision loss in my right eye, which, fortunately, did not lead to permanent vision loss.

I just put a question to Perplexity.ai
Here is the answer:

No, a negative temporal artery biopsy does not always rule out giant cell arteritis (GCA). Key reasons include:
False negatives occur in up to 7%–44% of cases due to factors like skip lesions (segmented artery inflammation) and corticosteroid use before biopsy.
Insufficient biopsy length (< 15–20 mm) may miss affected areas.
Bilateral biopsies increase diagnostic yield by 5%–12% when one side is negative.
Clinical judgment remains critical, as GCA diagnosis relies on symptoms (e.g., headache, vision loss), elevated inflammatory markers, and imaging (e.g., ultrasound). Treatment should continue if suspicion persists despite a negative biopsy.

My pains with GCA were always intermittent - they would come and go. My pain with PMR was constant. It lessened a little at night, and was worse in the morning.
How is your energy level? Are you anemic? Both PMR and GCA can result in anemia from chronic inflammation.
I hope you can get an answer about your symptoms and appropriate treatment.

How were you diagnosed with GCA?
My rheumatologist was the one that ordered the temporal artery biopsy.
I was on Prednisone 50mg until biopsy came back negative.
Now I’m down to 5 mg, but sedrate still elevated so I’m going to start Kevzara too. Scalp is still tender. Nobody seems to think much about that.
My dermatologist ordered sone type of drops for my scalp. Hasn’t helped.
I saw my eye doc because of a vision disturbance and he continues to monitor me every couple months.
My rheumatologist does not think I have GCA.