Where have you experienced pain due to PMR?H

In July 2024, I was diagnosed with PMR/GCA and began 60 mg. of Prednisone daily. With the help of monthly Actemra infusions (began Jan 2025), I tapered off of prednisone in early November 2025. I'll be getting the infusions for at least another year. About a month after I tapered off, some pains developed in both knees, wrists, and thumbs. Pain level ranges from 5-8. My rheumy thinks it is osteoarthritis, based on a video appt. I had with him last month. (I won't be able to see him until late May/June) I wonder if the Prednisone damaged those joints, as I didn't have the issues before PMR. Rheumy wanted to prescribe meloxicam, but I've had side effects (chest pain) in the past and don't care to have them again. I'm trying to manage with extended release Tylenol. Sometimes it works. Sometimes, it doesn't. I try to keep my body moving with walking, water aerobics, golf and biking.

@ropnrose
My Rehumy said similar, osteoarthritis was always there and it has come to the forefront. My whole family has it, and my active lifestyle kept mine at bay. And now it is more noticeable.
I am off prednisone and on Kevzara.
I will take Tylenol for Arthritis occasionally for more strenuous activities, like long hikes.

I was hospitalized a year ago, diagnosed with PMR and have gone from 40 mg Prednisone a day to one mg. Then a few weeks ago severe headaches started and leg cramps especially at night. I thought I was on the mend and would get off the prednisone but my body said, not now. I went back up to 10 mg daily to help ease the pain. We are experiencing some very cold weather now and I wonder if that affects it. Has anyone else suffered from headaches and leg cramps while on Prednisone? I guess I would like to know if it's related. I'm still waiting to see a rheumatologist but the waiting list is one to two years.

@allinge

"I'm still waiting to see a rheumatologist but the waiting list is one to two years."
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May I ask where you are located? I know wait times can be long but this surprises me. I had 3 rheumatologists present when I was diagnosed with PMR. I live in Iowa but fortunately there is a large University Medical Center just a few miles away. I worked at this medical center and often walked to work.

Leg cramps are very common when a person is on Prednisone. My worst leg cramps were in the middle of the night and caused a very rude awakening.

Your headaches are more concerning because of possible GCA. Tell your doctor about your headaches so they are aware of the problem. I have always denied ever having GCA headaches.

My temporal and around my eye electrical headaches happened all the time but I had trigeminal neuralgia so that was understandable. I had trigeminal neuralgia headaches while sleeping which is uncommon. Once a trigeminal neuralgia headache woke me up and wouldn't stop. My wife needed to go the emergency room with me because I was incapacitated and couldn't speak. The emergency room doctor got it to stop with a medication that he googled on the internet. He said I had the worst case of trigeminal neuralgia he had ever seen.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344

I had classic symptoms. Pain radiating across my shoulder girdle and hip girdle for no reason and fatigue.

@dadcue We live in Canada near the Rocky Mountains. I know the change of weather can cause aches and pains. Glad to hear that the Prednisone can cause leg cramps and boy they are painful! I told my GP about the headaches and even mentioned GCA. He didn't seem too interested and dismissed it. Like I said, there is a long waiting list for a rheumatologist here. I had blood tests done a few weeks back. There wasn't any for concern as the GP never called to discuss it, so I assumed it was fine. Thanks for your comments.

@bcrast
I have noticed a focusing issue as well. I’ve been on prednisone for almost 6 months and just tapered off yesterday. I’ve been to the eye doctor and my cataracts have worsened significantly along with my vision. I’m scheduled for surgery late March and early April. Also have dry eyes.
Hope this helps. The worry of GCA is always hanging over our heads.

@caroljeand Thank you. even though I have been reassured by a doctor who runs a clinic that researches GCA, the worry still slips in. I too keep trying to find an eye doctor who can explain my vision difficulties beyond blaming dry eyes. Your comment gives validity to my worries. This can all be so crazy making.