Where have you experienced pain due to PMR?H

Oh, I hear you on that! I was even having trouble turning the steering wheel when driving. It is a weird disease.

Similar. I know it sounds weird but feeling for me is like a really bad sunburn.

PMR started 11 yrs ago in hip girdle area - lower back, hips, glutes, and hamstrings. Then started in shoulders and arms. I am at 6mgs pred daily and have one or two flares per yr. Flares usually affect shoulders, hips, rt hand and rt Achilles. Often accompanied by PMR fatigue. Used to also come with brain fog, but not recently.

My PMR started suddenly in 2021 and one morning I couldn't get out of bed. The worst overall pain was a burning sensation that went across from one shoulder to the other and there were bizarre sudden pains like someone was stabbing me with a knife under my shoulder blades. It also affected my hips and legs and it hurt to walk more than a block. Beforehand I was able to do mountain hikes and 10 mile bike rides. It almost felt like a movement disorder because even a small motion would cause severe pain and before I could move another few inches that pain had to subside. The only way around it was to move very slowly with either arms or legs. I also had a headache at my left temple. For an active person the loss of function was almost worse than the pain! Four years into this the pain is under control with prednisone and now Actemra but I have flare-ups and can't get off the drugs yet.

@jasharum I’ve just been discharged from hospital with GCA. I am a white, 80 yr old, woman with scandanavian descent.
I had all major markers, inflammation of scalp, hip and knee pain, extreme headaches and jaw claudication. These symptoms would last around three months then move on to a new one.
Then it affected my eyes. I had double vision left eye for less than an hour, made dr appt. Day after Thanksgiving total loss of vision in right eye. Admitted to hospital and immediately started mega doses of prednisone in IV. Four bags 24-hour daily for three days. Vision loss is permanent. Waiting on results of temporal biopsy while on steroid treatment at home.
Previous to GCA I have non hodgins lymphoma which I had two years of chemotherapy every other month. Onchologist remarked sed rate was off and inflammation was high……see her in January .

@keldus I am 85 years. I was erroneously diagnosed with GCA in August, 2024, when I suddenly lost the sight in my right eye. I immediately went to my eye doctor. He suspected GCA and told me to go to the hospital immediately. I too was given massive doses of prednisone for 3 days. Happened on a Friday. On Sunday they did a temporal artery biopsy. Waited two days for results which were negative. But they kept treating me like it was CGA. Then they decided maybe it was a small stoke in the tiny veins behind my eye. I ended up in the stroke ward for a complete workup which revealed nothing. Still don't know the exact cause of my blindness but it, too is permanent. I find life a bit more difficult with only one eye. But I am able to drive during the day and my left eye is pretty good. The big problem was being on that awful drug, prednisone. They made me do a slow taper and I was taking prednisone for 7 months before I could finally stop. I'm surprised to hear you say you had hip and knee pain as a part of GCA symptoms. They didn't mention that to me. I have painful knees and hips all the time due to arthritis. But I had none of the other symptoms, yet a few of my doctors still think it was GCA. Is your other eye ok? So sorry to hear you had this experience.

Oh, thank you for responding! GCA can make you feel you are all on your own.
My good eye gets “tired” then all is very blurry. Usually mornings are good. Love that you can drive, I wouldn’t attempt it.
Do you have the jaw Claudication? It can be painful. I’m mostly smooth foods with no chewing involved. I’m praying that will get better like my other hip, scalp and headaches did.
I’ll try to update after dr appointment this week.

@keldus this is an update to my previous post.
I am now driving, which is a blessing even if it is only during daylight hours, that’s OK.
I’m down to 50 mg per day on prednisone. My rheumatologist has me stepping down 10 mg per week.
I’m sleeping about four 4 1/2 hours a night. This isn’t normal for me. Last year, 2024, I was doing an easy seven hours a night. I guess another side effect?
I honestly feel like I’m not improving, at all. Maybe I’m supposed to feel this way. Another question for my rheumatologist.
I do have Prescription glasses now which have enabled me to drive.
I loathe not being able to work in my flower garden and Yard. I am too weak to sustain any type of physical labor. In that most of the time I am so jittery I feel like I could jump out of my skin.
Hopefully, this is temporary.

@kereno Are you in remission now?

@pah17 once on Prednisone I could function normally but felt the intensity of the steroid and knew it was destructive (last time I went through this 10 years ago it gave me a solid case of osteopenia—I was in my early 60s and hadn’t had it before). So I was eager to wean from prednisone ASAP. It took 8 months last year to complete a slow weaning. SWas it a side affect or just aging that over this period last year my cataracts grew from barely any to operable, my hair thinned so that I had precancerous growths on my scalp, and we haven’t checked my degree of osteopenia or other systems where prednisone hits.
I enjoyed 3 months off Prednisone at the end of 2025 when I started getting symptoms of PMR again. My Dr ordered blood tests to confirm my SED rates were elevated and the blood something rate (I forget the other blood test’s name). So back to 20 mg Pred. I am now weaning again, trying to taper by percentages @ a steady 2-week dose decline. I am lousy about my diet and exercise—really need to get on that because there’s a direct correlation between my AM aches and pains and sugar intake, even on Prednisone.
A friend pointed out that all my side effects could also be attributed to aging (I’m in my 70s now). Could be! But I’d still like to get off prednisone and maintain my life drug-free as much as possible. Live healthfully. Good plan! It’s a new day. Thanks for the prompt.