Exercise with PMR and/or GCA

Hi, I do not have GCA but I do have PMR. I have been doing CrossFit since 2016 twice a week. When I was diagnosed with PMR in Jan 23 my PCP was very clear that I was to continue with my exercise program. I will be 83 in June. I am off prednisone entirely since Jan 24 and I continue to exercise regularly.

Hello @isabelle7, I can understand worrying about your husband after he suddenly developed GCA symptoms.
It's good to hear he is starting to feel better and his headaches are under control. I don't have any experience with GCA but I think exercise was one of the keys to feeling better with my PMR and getting it under control as long as I didn't overdo the exercise. @redboat, @tsc, @ess77, and others may have some experience to share with exercise and GCA along with PMR.

You may also find these related discussions helpful:
--- Resistance Training and PMR: https://connect.mayoclinic.org/discussion/resistance-training-and-pmr/
--- PMR and exercise: What helps you?: https://connect.mayoclinic.org/discussion/pmr-and-exercise/

Has your husband looked into any alternative treatments to help with the PMR/GCA?

Hi Isabelle7,
I had a similar experience with pmr and gca, although my gca onset came much quicker, within 2 months. I had been a 60 mile per week cyclist before this started. Between the pain in my legs and the severe loss of fluids sweating at night ( I lost 16 pounds in 14 days) I could only ride about 3 miles a day. Then after the gca symptoms started I didn't want to ride at all. I developed severe depression. My Rheum told me not to stop exercising no matter how little. I kept at it when I could. I do not believe that exercising caused the gca, but I'm no doctor. I just can't imagine exercise being a bad thing when you are going thru this. Just remember, not everyone responds the same with these diseases. Unfortunately you have to deal with the symptoms the way they come. And it's not the same for everyone. Hope he feels better soon.

Thank you very much for your response. It's helpful to hear you were able to continue exercise and get over PMR in a year! That is promising.

Thanks for sharing your experience. I'm sorry you also ended up with GCA. I hope you're doing better now. I've watched my husband go down from the high 190's to the mid 170's. He's never been this weight in the 44 years we've been together. But, having said that, since we finally got a doctor to agree to split-dosing the prednisone for GCA (he's currently on 80 mg per day, higher than most per our doctor - this following three IV infusions of 1200 mg each of steroids) he's finally headache and pain free. He's gotten his appetite back so I'm hoping he can gain some of the weight back. He's had no energy for actual exercise and I think we were both afraid it could make matters worse, especially when his inflammation levels were so high. We'll see next week if they're coming down. We've been going to large grocery stores to get in some steps. I own a childcare/preschool working from home and it's dark by the time we close so walking outside during the week has not been practical. We live on a steep hill so our neighborhood isn't a good place to walk. We'll get it figured out. We've considered a treadmill.

Hi @isabelle7, Not everyone with PMR develops GCA, but roughly 30% do. My rheumatologist told me PMR and GCA are the same disorder that just strikes the body in different places. The onset of PMR for me followed an ankle injury from walking backwards. I was not diagnosed with PMR for over a year and I kept walking about an hour a day through the incredible pain. It gave me no relief. I developed GCA.
Anorexia is a symptom of PMR/GCA and I lost about 15 pounds. I've gained about 10 back.
In past posts about exercise and PMR/GCA some have said that when they overdid their exercise, they had flareups. I still exercise, but not as robustly as I used to. I walk, use a rebounder, and do a Yoga program designed for osteoporosis (Dr. Loren Fishman - 12 Poses vs Osteoporosis).
If your husband hasn't exercised for a while, it's probably best for him to start back gradually, do what he's comfortable doing, and pay attention to that that old adage, "listen to your body."
I don't make myself "push through it anymore." If I'm really fatigued, I skip the workout for a day.
I was on prednisone for a year and a half, and off it now for about a year and a half, with no flareups.
After PMR and GCA, I'm not back to my previous energy levels, but I'm also fulltime caregiver to my husband with Alzheimer's Disease, which takes a lot of energy, even though he's somewhat functional around the house.
I wish you both the best.

Hi @tsc. Wow! I can’t imagine you having to deal with this and being a caregiver to your husband. My husband also lost his appetite and lost 20 pounds. He hasn’t regained any yet but we are in the very early days of GCA. He’s had PMR since May 2023 and diagnosed with GCA following biopsy in February 2024.

I appreciate your feedback on exercise and will pass it on to him.

Thank you for your response @johnbishop. And for sharing the links and others who have experience with exercise with GCA and PMR. It's good to hear that exercise is a good thing - not something to worry about. I was afraid he was doing too much with the resistance bands and that it could have somehow made matters worse (before getting GCA.)

I haven't heard of any alternative treatments that would help PMR/GCA. Aside from Actemra which we are holding off starting until the results of his CAT scans come back. His biopsy confirmed he has GCA but the doctor wants to make sure there's not something else going on. She mentioned she wants to rule out MPA which is Microscopic Polyangitis which is described as a rare condition that results from blood vessel inflammation. MPA can cause damage to organ systems. Areas most commonly affected by MPA include the kidneys, lung, nerves, skin and joints. I really hope he doesn't have that. I've never heard of it, but then again, until he got them I'd never heard of PMR or GCA.