Think I have Giant Cell Arteritis (or GCA)

Hi @novabill, I think I would be alarmed too and probably would have made the same decisions if my PMR was still active and I had some prednisone around to take. It's good that you were able to give your rheumatologist a heads up through your patient portal and that you have an appointment on Monday.

My PMR is in remission but the past week or so I've noticed I have some pain and tenderness in my scalp on the top of my head. I worry about my vision also so I'm going to check with my doctor next week.

Can you let me know if you find out more at your appointment?

I had two bouts with PMR and then was in remissions
When I quickly developed double vision and tenderness in temples. I immediately got an appointment with my rheumatologist and was given 60 ml of prednisone. Blindness was avoided by quickly taking that large dose of prednisone- GCA was diagnosed. My Dr. prescribed that high dose even before a definitive diagnosis of GCA to prevent vision loss. I was taking prednisone for 1 1/2 yrs. but now take Actemra.

Hi John,
The scalp tenderness I experienced lasted about two weeks and I didn't feel it unless I touched the top of my head with my fingertips. It might be a good ideas to get your CRP checked too. A doctor told me to immediately go to the emergency room if I had any difficulty seeing.
Do you still take prednisone?
Take care!

That was a wise move on your part, @novabill.

Hi Teri,
Same here, I only feel the scalp tenderness when I touch it. I was going to send my PCP a message through my Mayo patient portal in the morning just to check. I don't have any symptoms of PMR flaring but do have every day stiffness in the morning which I've always had and some eye's watering a lot which I think is due to my CPAP mask leaking air around my eyes every night but not sure. I've been off of prednisone since mid 2018 when my last PMR episode went into remission.
Will let you know what I hear back.

Good luck!

Saw my Rheumy on Monday...no earth breaking actions...she did the GSA exam, asked the questions and said I did the right thing to start the 30mg/daily of prednisone, no biopsy at this time...we'll taper 10mg each week eventually to 10 mg per day, will see her in a month to recheck blood work and reaction to starting the methotrexate once a week to help with PMR given I'm unable to get below 5 mg daily of prednisone...

Last weekend I lost vision in my left eye 3 times. I had pain around the eye socket, the left side of my nose, scalp, and felt terrible. The vision loss was only for an hour each time. They are questioning me because they don’t understand why I saw totally white and not black when my vision wasn’t there.

I’ve had all tests except biopsy of temporal artery. That will happen as soon as a surgeon can fit me into their schedule.

I was diagnosed with Polyarteritis Nodosa (Vasculitis) in 2015. This is the icing on the cake!

I was diagnosed with Vasculitis (Polyarteritis Nodosa) in 2015. Now my rheumatologist suspects I have Giant Cell Arteritis too. I lost vision in my left eye 3 times last weekend, and my scalp is very sore.
I’m now on 60mg of prednisone. :/
My blood tests have always been relatively normal, and that’s a problem. This week I ended up in the hospital. They did a CT scan with contrast, and a brain MRI. Everything was normal. I need to have a temporal artery biopsy. Unfortunately the vascular surgeons are booked way out so I am waiting for a space to open.
It’s tough on doctor and patient when things don’t go by the textbook.

Sorry to hear your news. I also have a form of Vasculitis GPA and even when my blood work looks normal things are not well. Seems to be a trademark of the disease. I wish you health and peace 🙏🏼