Recently Diagnosed With GCA - Still Experiencing Pain

Posted by amycmoore50nc @amycmoore50nc, Jul 22 8:04am

Hi Everyone!
I was recently diagnosed with GCA and have been on prednisone for over a month now. I am concerned because I started at 60mg for 2 weeks, tapered to 40 for 2 weeks then my blurry vision and headaches reappeared so she upped me to 50 for one week and now I am back to 60mg. I am still experiencing the bad headaches and blurry vision, one day so bad that the headache caused me to be out of commission for the whole day. I was just wondering if others had experienced this as well? Should I let my Rheumatologist know? I am waiting to start Actemra as soon as they ship my pens to me. Just still very new in this journey and wanting to hear from others.
Thanks so much!

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John, Volunteer Mentor | @johnbishop | Jul 22 8:36am

Hello @amycmoore50nc, Welcome to Connect. I would definitely let your rheumatologist know about your recent symptoms. My only experience is with two bouts with PMR but my rheumatologist and primary care docs were always telling me to let them know if I had any changes in my symptoms or if something wasn't working, especially if it concerned the eyes, vision, or pain in the temple, jaws or head. You are not alone with your symptoms and I'm sure @tsc, @gee18, @valerie6062, @klmint and others may have some information to share with you.

You may want to scan through related discussions on Actemra and other GCA treatments to learn what others have shared - https://connect.mayoclinic.org/search/discussions/?search=GCA%20treatments.

Are you able to call your Rheumatologist today?

Teri | @tsc | Jul 22 2:16pm

Hello @amycmoore50mc, I was diagnosed with GCA after a temporal artery biopsy and put on 40 mg prednisone (dosage based on my height and weight). My taper was to reduce prednisone by 5mg every two weeks so your taper sounds pretty dramatic. My rheumatologist also monitors my CRP (blood test for inflammation) pretty closely and prescribes prednisone accordingly.
A doctor friend told me if I ever had visual disturbance to go to the ER immediately, as inappropriately treated GCA can cause loss of vision.
I think you should let your rheumatologist know about your symptoms. I've read posts here from some who had GCA who were given IV prednisone in an emergency, due to severe symptoms.
I hope you get some resolution.

amycmoore50nc | @amycmoore50nc | Jul 22 2:29pm

Thanks so much for your response. My I reached out to my Rheumatologist, she is having me split my dose of prednisone to see if that helps. If it doesn’t after three days she did say to go to the ER. It’s just very frustrating because at first the prednisone was helping. She is monitoring my labs but they have all been normal. This is a very odd disease!