1. < Polymyalgia Rheumatica (PMR)

Think I have Giant Cell Arteritis (or GCA)

Posted by novabill @novabill, Jun 18, 2022

I’ve been having pain on the left side temple starting last Monday every night around 9pm. Taking ibuprofen at bedtime in order to sleep. I sent my Rheumy a note thru the portal for guidance but she was off Friday . What alarmed me was the symptoms started at 6pm on Friday and worse. So I went into a google overdrive, long story short, I self medicated with 30mg of prednisone given i take 6mg every morning for PMR. The pain went away within an hour. I have a long standing appt with my Rheumy on Monday so I’ll continue with the 30mg additional prednisone until then. Don’t like taking the addition prednisone but the thought of possible blindness made the decision to self medicate until Monday was easy.

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minijohn | @minijohn | Jul 31, 2022
In reply to @SusanEllen66 "I was diagnosed with Vasculitis (Polyarteritis Nodosa) in 2015. Now my rheumatologist suspects I have Giant..." + (show)
@SusanEllen66

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.

Jump to this post

My temporal biopsy was done by a general surgeon and was scheduled almost immediately once referred by my rheumatologist.

REPLY
1 reply
Amanda Roe | @amandajro | Jul 31, 2022
In reply to @SusanEllen66 "Last weekend I lost vision in my left eye 3 times. I had pain around the..." + (show)
@SusanEllen66

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!

Jump to this post

Hello @SusanEllen66. I can imagine your experience last weekend with losing your vision was very scary.

I actually found an existing discussion on Giant Cell Arteritis (or GCA) so you will notice that I have moved your post here: https://connect.mayoclinic.org/discussion/think-i-have-gca/

Members such as @novabill @tsc and @pickle7 have shared in this discussion and may be able to come in and share if they had a similar experience and provide you with some support.

Have you scheduled a biopsy of the temporal artery just yet? If so, when?

REPLY
2 replies
SusanEllen66 | @SusanEllen66 | Jul 31, 2022
In reply to @amandajro "Hello @SusanEllen66. I can imagine your experience last weekend with losing your vision was very scary...." + (show)
@amandajro

Hello @SusanEllen66. I can imagine your experience last weekend with losing your vision was very scary.

I actually found an existing discussion on Giant Cell Arteritis (or GCA) so you will notice that I have moved your post here: https://connect.mayoclinic.org/discussion/think-i-have-gca/

Members such as @novabill @tsc and @pickle7 have shared in this discussion and may be able to come in and share if they had a similar experience and provide you with some support.

Have you scheduled a biopsy of the temporal artery just yet? If so, when?

Jump to this post

Thanks. No biopsy yet because the vascular surgeon I am being referred to is booked out until December. They are going to try and squeeze me in as an emergency.

REPLY
SusanEllen66 | @SusanEllen66 | Jul 31, 2022

In addition to scalp tenderness I also have a numb feeling around my nose and lips. My Rheumatologist is not equating those things with possible GCA.

I’m also in the middle of neurological testing. Hopefully I can get an answer or two soon.

REPLY
Teri | @tsc | Jul 31, 2022
In reply to @amandajro "Hello @SusanEllen66. I can imagine your experience last weekend with losing your vision was very scary...." + (show)
@amandajro

Hello @SusanEllen66. I can imagine your experience last weekend with losing your vision was very scary.

I actually found an existing discussion on Giant Cell Arteritis (or GCA) so you will notice that I have moved your post here: https://connect.mayoclinic.org/discussion/think-i-have-gca/

Members such as @novabill @tsc and @pickle7 have shared in this discussion and may be able to come in and share if they had a similar experience and provide you with some support.

Have you scheduled a biopsy of the temporal artery just yet? If so, when?

Jump to this post

Hi @SusanEllen66, Before I was diagnosed with GCA, I lost vision in my right eye three times for about ten minutes each time. All I could see was white, but it went away. That was a few months before I had the temporal artery biopsy. A good friend, a doctor, told me that if I ever had difficulty seeing again to go to an emergency room immediately, as I could go blind.. My rheumatologist had the same reaction as your doctors when I told him I saw white, not black. He said it was unusual. Sometimes prednisone is prescribed before the tempioral artery biopsy. Have you had the blood tests for inflammation?
My doctor friend told me this is one of the only emergencies in rheumatology! I wish you the best, hope you don't have to wait too long for the biopsy, and hope your doctors will prescribe prednisone in the meantime.

REPLY
1 reply
Amanda Roe | @amandajro | Jul 31, 2022
In reply to @SusanEllen66 "I was diagnosed with Vasculitis (Polyarteritis Nodosa) in 2015. Now my rheumatologist suspects I have Giant..." + (show)
@SusanEllen66

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.

Jump to this post

@SusanEllen66 I noticed you had another post on the topic of GCA so have brought this one into the same existing discussion, which you can find here: https://connect.mayoclinic.org/discussion/think-i-have-gca/

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Jul 31, 2022
In reply to @tsc "Hi @SusanEllen66, Before I was diagnosed with GCA, I lost vision in my right eye three..." + (show)
@tsc

Hi @SusanEllen66, Before I was diagnosed with GCA, I lost vision in my right eye three times for about ten minutes each time. All I could see was white, but it went away. That was a few months before I had the temporal artery biopsy. A good friend, a doctor, told me that if I ever had difficulty seeing again to go to an emergency room immediately, as I could go blind.. My rheumatologist had the same reaction as your doctors when I told him I saw white, not black. He said it was unusual. Sometimes prednisone is prescribed before the tempioral artery biopsy. Have you had the blood tests for inflammation?
My doctor friend told me this is one of the only emergencies in rheumatology! I wish you the best, hope you don't have to wait too long for the biopsy, and hope your doctors will prescribe prednisone in the meantime.

Jump to this post

Thanks so much for sharing. Knowing that someone else saw WHITE is comforting to me! I get strange looks when I tell my health care providers that I didn’t see black.
I’m taking 60mg of prednisone right now, and waiting for an appointment with a vascular surgeon.
My blood tests never show my inflammation. I’ve had Vasculitis since 2015…

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Jul 31, 2022
In reply to @amandajro "@SusanEllen66 I noticed you had another post on the topic of GCA so have brought this..." + (show)
@amandajro

@SusanEllen66 I noticed you had another post on the topic of GCA so have brought this one into the same existing discussion, which you can find here: https://connect.mayoclinic.org/discussion/think-i-have-gca/

Jump to this post

Amanda, thanks
I feel like I’m always in the wrong place. 🙃

REPLY
marilynredder2367 | @marilynredder2367 | Aug 1, 2022
In reply to @SusanEllen66 "I was diagnosed with Vasculitis (Polyarteritis Nodosa) in 2015. Now my rheumatologist suspects I have Giant..." + (show)
@SusanEllen66

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.

Jump to this post

Sometimes and perhaps 50% of the time the biopsy is shows nothing. GCA mainly diagnosed with symptoms like you are describing. If the prednisone helps then that’s what it is. I have had GCA for many many years. Ii didn’t cause blindness but I have other odds issues. Unfortunately doctors know very little about GCA. Especially when it involves the tongue.

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Aug 1, 2022
In reply to @marilynredder2367 "Sometimes and perhaps 50% of the time the biopsy is shows nothing. GCA mainly diagnosed with..." + (show)
@marilynredder2367

Sometimes and perhaps 50% of the time the biopsy is shows nothing. GCA mainly diagnosed with symptoms like you are describing. If the prednisone helps then that’s what it is. I have had GCA for many many years. Ii didn’t cause blindness but I have other odds issues. Unfortunately doctors know very little about GCA. Especially when it involves the tongue.

Jump to this post

Thanks so much. I’m sorry you have been dealing with this situation.
I’m finding that pressure on my left side is making the symptoms worse. So there it is…right now I’m taking 60mg of prednisone.
What happens with your tongue?

REPLY
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