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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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.

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Susan
I think I have already responded I want to address and it may help for anyone else with GCA. I found a neurologist researched and spent two hours with me looking at scans and info on GCA. I found an article going back years which I have a copy of about a man who went deaf for two days. The only hint of GCA was a high ESR. He was given doses of 60 mg of prednisone and within 48 hours his hearing came back. So when we are told it only happens to the large vessels this is not true because the small veins going into the ear had giant cell arteritis. Had he not been given prednisone immediately he would have been deaf permanently. My situation relates to my tongue which was paralyzed as a result of GCA because in 2015 my doctors had no idea that my curled tongue could be a result of GCA. Honestly I’m not sure if They could have done any more than what they did except to keep me on a higher dose a little longer. Who knows.

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Teri | @tsc | Aug 1, 2022
In reply to @SusanEllen66 "Thanks so much for sharing. Knowing that someone else saw WHITE is comforting to me! I..." + (show)
@SusanEllen66

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…

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You're welcome. By the way, GCA is a vision threatening form of vasculitis (Cecil and Goldman's Textbook of Medicine). Glad you're on prednisone now.
I was surprised to be given a general anesthetic for my temporal artery biopsy. It went well without any pain. The Rheumatologist asked me what side of my head most of my symptoms were on, and the surgeon did one biopsy on that side. Sometimes people have both sides done. Good luck@SusanEllen66!

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1 reply
SusanEllen66 | @SusanEllen66 | Aug 1, 2022
In reply to @tsc "You're welcome. By the way, GCA is a vision threatening form of vasculitis (Cecil and Goldman's..." + (show)
@tsc

You're welcome. By the way, GCA is a vision threatening form of vasculitis (Cecil and Goldman's Textbook of Medicine). Glad you're on prednisone now.
I was surprised to be given a general anesthetic for my temporal artery biopsy. It went well without any pain. The Rheumatologist asked me what side of my head most of my symptoms were on, and the surgeon did one biopsy on that side. Sometimes people have both sides done. Good luck@SusanEllen66!

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Yes, last night I paid attention to how I felt when I put my head on the pillow on the “bad” side. Sure enough, my scalp started to hurt, the pain in my face returned.
So, there it is…
I’m so bummed about this not only for me, but for my son. Both his father and I are plagued with Vasculitis. His dad has PMR. I have PAN in addition to the new GCA. Hopefully, there isn’t a genetic problem for him.

Every day is an adventure for sure!
Thanks for sharing your information!

REPLY
2 replies
marilynredder2367 | @marilynredder2367 | Aug 1, 2022
In reply to @SusanEllen66 "Thanks so much. I’m sorry you have been dealing with this situation. I’m finding that pressure..." + (show)
@SusanEllen66

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?

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Very long story for another time I’m afraid. Take care and treat it like GCA. If 60 doesn’t work you might need 80.

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Teri | @tsc | Aug 1, 2022
In reply to @SusanEllen66 "Yes, last night I paid attention to how I felt when I put my head on..." + (show)
@SusanEllen66

Yes, last night I paid attention to how I felt when I put my head on the pillow on the “bad” side. Sure enough, my scalp started to hurt, the pain in my face returned.
So, there it is…
I’m so bummed about this not only for me, but for my son. Both his father and I are plagued with Vasculitis. His dad has PMR. I have PAN in addition to the new GCA. Hopefully, there isn’t a genetic problem for him.

Every day is an adventure for sure!
Thanks for sharing your information!

Jump to this post

The prednisone should be helping, @SusanEllen66. How long have you been taking it?

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Aug 1, 2022
In reply to @tsc "The prednisone should be helping, @SusanEllen66. How long have you been taking it?" + (show)
@tsc

The prednisone should be helping, @SusanEllen66. How long have you been taking it?

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Friday morning so that’s 3 days.
I’m taking things day by day.

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1 reply
Teri | @tsc | Aug 2, 2022
In reply to @SusanEllen66 "Friday morning so that’s 3 days. I’m taking things day by day." + (show)
@SusanEllen66

Friday morning so that’s 3 days.
I’m taking things day by day.

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I think sometimes it takes a few days to kick in. Take care.

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marilynredder2367 | @marilynredder2367 | Aug 3, 2022
In reply to @SusanEllen66 "Yes, last night I paid attention to how I felt when I put my head on..." + (show)
@SusanEllen66

Yes, last night I paid attention to how I felt when I put my head on the pillow on the “bad” side. Sure enough, my scalp started to hurt, the pain in my face returned.
So, there it is…
I’m so bummed about this not only for me, but for my son. Both his father and I are plagued with Vasculitis. His dad has PMR. I have PAN in addition to the new GCA. Hopefully, there isn’t a genetic problem for him.

Every day is an adventure for sure!
Thanks for sharing your information!

Jump to this post

Listen Susan. GCA is not the end of the world. Take your prednisone and see if you can get on Actemra. After symptoms are gone and you have enough prednisone in your body, Actemra will help you reduce quickly. It brings down the inflammation and so ESR and CRP come down. I started before it was approved for GCA and I was part of the trials so I didn’t pay for it. I’m still on 7 mg of prednisone for my adrenals. Good luck. Ps. If the biopsy is negative so was mine but I was treated for GCA and I’m still here at 80.

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1 reply
SusanEllen66 | @SusanEllen66 | Aug 3, 2022
In reply to @marilynredder2367 "Listen Susan. GCA is not the end of the world. Take your prednisone and see if..." + (show)
@marilynredder2367

Listen Susan. GCA is not the end of the world. Take your prednisone and see if you can get on Actemra. After symptoms are gone and you have enough prednisone in your body, Actemra will help you reduce quickly. It brings down the inflammation and so ESR and CRP come down. I started before it was approved for GCA and I was part of the trials so I didn’t pay for it. I’m still on 7 mg of prednisone for my adrenals. Good luck. Ps. If the biopsy is negative so was mine but I was treated for GCA and I’m still here at 80.

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Thank you! I’m very glad you are doing well.
Not one test, of any kind, has shown any evidence for GCA. Nothing. MRI, CT with contrast, blood work (no inflammation). Zero. So, hopefully a biopsy will help me feel less like I’m pretending or something…

I already have another form of Vasculitis. It’s a very rare one (30/1,000,000). Diagnosed with that in 2015.

So, yea me…I’m almost 73, and blessed every day!

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1 reply
marilynredder2367 | @marilynredder2367 | Aug 3, 2022
In reply to @SusanEllen66 "Thank you! I’m very glad you are doing well. Not one test, of any kind, has..." + (show)
@SusanEllen66

Thank you! I’m very glad you are doing well.
Not one test, of any kind, has shown any evidence for GCA. Nothing. MRI, CT with contrast, blood work (no inflammation). Zero. So, hopefully a biopsy will help me feel less like I’m pretending or something…

I already have another form of Vasculitis. It’s a very rare one (30/1,000,000). Diagnosed with that in 2015.

So, yea me…I’m almost 73, and blessed every day!

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I’m not making a little of GCA. when I originally had head pain and a ESR of 85 this was it. Went from Florida to Mayo in Minnesota. They couldn’t tell me anything else. Did the cat scan And found out I was allergic to the dye but nothing else showed up. It was difficult not having a diagnosis but I became accustomed to it.
Which other autoimmune disease do you have? I have PMR and Raynauds hence Florida instead of NJ.

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