GCA and balance problems?

Posted by carlarosie @carlarosie, Sep 3 5:06am

I never associated my poor balance with GCA. Has anyone else experienced this?
I recently had a flareup and the doctor is suggesting using methotrexate plus prednisone has anyone else had success with this?

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gailcha | @gailcha | Sep 3 7:33am

Yes I too have GCA and balance problems. I’ve noticed that when my GCA symptoms get worse, so does my balance. I was on prednisone and methotrexate, but could not tolerate methotrexate. Now on prednisone and Actrema but still not in remission. Good luck.

John, Volunteer Mentor | @johnbishop | Sep 3 8:13am

@nor5501 started a related discussion here that might be helpful - I have a really bad balance problem: https://connect.mayoclinic.org/discussion/i-have-a-really-bad-balance-problem/

carlarosie | @carlarosie | Sep 3 8:16am

In reply to @gailcha "Yes I too have GCA and balance problems. I’ve noticed that when my GCA symptoms get..." + (show)

@gailcha I went into remission, went on the Actemra, but had to go off it after about a year because my blood counts were extremely low. This week I will be starting the new regimen and report how it is working. I’ve had quite a few serious falls, and if I find that, it’s the medication causing it I have to rethink what I’m going to do un terribly afraid of what can happen with another serious fall. I am seeing a balanced neurologist later this month.

sandralbrooks | @sandralbrooks | Sep 4 8:48am

I'm on methotrexate and Actemera and it's working. I haven't had balance problem. Good luck!

Becky, Volunteer Mentor | @becsbuddy | Sep 4 9:29pm

In reply to @sandralbrooks "I'm on methotrexate and Actemera and it's working. I haven't had balance problem. Good luck!" + (show)

@sandralbrooks Welcome to Mayo Clinic Connect! Are being treated for GCA ? And your balance is still OK?
Maybe you could tell us a little bit more about yourself. How did you find Mayo Connect?

sandralbrooks | @sandralbrooks | Sep 5 6:41am

My primary physician is at Mayo.
I was diagnosed on August 4 2025. I had no headache or muscle aches, just double vision. It went undiagnosed for 2 weeks. Then finally went to ER. They knew right away. Sed rat and CRP were very high. I had no problem with balance at all.
I have diabetes so the prednisone was bad for me, had to be on a strict diet and use insulin (new for me) Now I'm on methotrexate and Actemera. It is working. One flare in Feb but a few weeks of prednisone and added methotrexate and that worked. I appreciate this group. My rheumatologist at Mayo is great. And has helped me through this journey.

bajcsg2468 | @bajcsg2468 | Sep 7 12:02am

In reply to @sandralbrooks "My primary physician is at Mayo. I was diagnosed on August 4 2025. I had no..." + (show)

@sandralbrooks

carlarosie | @carlarosie | Sep 7 8:32am

In reply to @sandralbrooks "My primary physician is at Mayo. I was diagnosed on August 4 2025. I had no..." + (show)

@sandralbrooks my headaches came back after being off prednisone and a temp for seven weeks went back on prednisone 20 mg added methotrexate only got down as far as 15 mg on the prednisone and the headaches are returning. I just want one day where I feel well. I also have double vision and poor balance and my blood work does not show anything. I’m being treated by diagnosis of symptoms only.

sandralbrooks | @sandralbrooks | Sep 8 6:38am

Talk with your Rheumatologist about the double vision, very serious symptom. Maybe adding another drug or raise the prednisone dose. Methotrexate has some side effects too. Overall for me, it's worth it. Wishing you the best!