Recently Diagnosed With GCA - Still Experiencing Pain

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/.

Are you able to call your Rheumatologist today?

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.

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!

Hi All,

Covid vaccine gave me PMR and as of 4 days ago I was experiencing GCA. I’m on 60 mg prednisone and feel gross/ sick. I knew as soon as my temples were painful and headaches what it was and immediately saw doctor. I get vertigo with the headaches as I did after the Covid vaccine. Asking doctor tomorrow if I can use 40 mg prednisone instead. Waiting on approval for the rights meds as my insurance already denied one and I can’t much blame them due to extremely high price. Looking to go back on mextrotrate. Rather loose my hair than my eyes. SMH.

@amycmoore50nc I'm the person @tsc mentioned about getting IVs of high dose prednisone at the hospital to save my vision. I was hospitalized for 3 days, and then I took 60 mg of prednisone per day for 6 weeks. I also started taking weekly injections of Actemra 6 weeks after I was diagnosed. I was diagnosed a year and a half ago. I still take Actemra, but I was able to stop prednisone 6 months ago. My vision is ok, and I feel good now.

All of my symptoms stopped by the second day that I was hospitalized and started getting the IVs. I haven't had any symptoms since then. Hopefully splitting the dose of prednisone will help you, but you will need a different treatment if that doesn't work. It could be that the dose of prednisone is too low. I think it is uncommon, but some people start at 80 mg. It could also be that your body is not responding completely to prednisone.

You mention that you will be starting Actemra soon. Actemra has worked very well for me. I haven't had any side effects, and it allowed me to get completely off of prednisone. The problem for you is that Actemra can take up to 3 months to be fully effective, and also it isn't completely effective for everyone. Some people still have to take a low dose of prednisone or methotrexate along with the Actemra.

I hope you find the right treatment soon. It sounds like your rheumatologist is doing the right things.

@amycmoore50nc
Not sure why the ER is the answer. The times I went seemed I knew more than them. I have been on this journey for 5 years. I would say study the disease so if you are given advice you know if it sounds right. It can all get better. I used the anti inflammatory diet to help the process.

@tweet
So sorry you are in the worst spot on your journey. How you taper is very important. On a 5 year journey, myself. I used the anti inflammatory diet to help my body conquer this disease. It at least is positive, makes you feel better and gives you something to focus on. Support groups allowed me to see what other doctors recommended which helped me to know I was on the right path. Keep good notes, I wish I did, helps you find the answer for you quicker.

Before I was diagnosed a year and a half ago I had an episode where I lost part of the vision in my left eye for a few seconds. It was the middle of the night. I went to the emergency room to get it checked out. They did blood work and ran a lot of tests - EEG, EKG, MRI, and ultrasound. They were checking to see if I had a stroke or some other problem. Within a few hours they diagnosed me with GCA and PMR. They did a temporal artery biopsy, but started treatment for the GCA immediately without waiting for the results of the biopsy. The biopsy results came back 4 days later and confirmed that I had GCA. If they had waited for the results of biopsy before starting treatment, I probably would have lost at least some vision in one or both eyes.

If someone with PMR has vision problems, they should get it checked out immediately. It could be an emergency where time is critical.