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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SusanEllen66 | @SusanEllen66 | Aug 4, 2022

I know it’s frustrating…
As you know, GCA, and PMR are forms of Vasculitis.
There are about 15 diseases that fall under the category of Vasculitis.
I have another one, Polyarteritis Nodosa PAN. It inflamed my medium arteries and caused my peripheral
neuropathy. The PAN was diagnosed in 2015. I took prednisone for 8 months and went into remission until the end of 2021. Then I got methotrexate, and infusions of Rituxan.
Fibromyalgia is also on my list of annoying things I try and ignore.
Your Raynaud’s is awful. I had it for a short period when I first started with the PAN. I remember how painful it was to touch anything in the freezer! Glad you migrated to FLA! I went from NY to Arizona 36 years ago. I’ve been seen at Mayo Phoenix-Scottsdale.

By the way, my rheumatologist just upped the prednisone dose again to 70mg. :/

REPLY
1 reply
marilynredder2367 | @marilynredder2367 | Aug 4, 2022
In reply to @SusanEllen66 "I know it’s frustrating… As you know, GCA, and PMR are forms of Vasculitis. There are..." + (show)
@SusanEllen66

I know it’s frustrating…
As you know, GCA, and PMR are forms of Vasculitis.
There are about 15 diseases that fall under the category of Vasculitis.
I have another one, Polyarteritis Nodosa PAN. It inflamed my medium arteries and caused my peripheral
neuropathy. The PAN was diagnosed in 2015. I took prednisone for 8 months and went into remission until the end of 2021. Then I got methotrexate, and infusions of Rituxan.
Fibromyalgia is also on my list of annoying things I try and ignore.
Your Raynaud’s is awful. I had it for a short period when I first started with the PAN. I remember how painful it was to touch anything in the freezer! Glad you migrated to FLA! I went from NY to Arizona 36 years ago. I’ve been seen at Mayo Phoenix-Scottsdale.

By the way, my rheumatologist just upped the prednisone dose again to 70mg. :/

Jump to this post

Good idea 70. I had cataract surgery today. Call my wife assume as I am able.

REPLY
1 reply
marilynredder2367 | @marilynredder2367 | Aug 4, 2022
In reply to @marilynredder2367 "Good idea 70. I had cataract surgery today. Call my wife assume as I am able." + (show)
@marilynredder2367

Good idea 70. I had cataract surgery today. Call my wife assume as I am able.

Jump to this post

That did not come out right. Don’t know where call my wife came from. I will write again soon I have developed a speech impediment and have half a paralyzed tongue due to GCA so I like instead of speaking. I love a gift from GCA which really doesn’t only deal with large vessels.

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Aug 4, 2022
In reply to @marilynredder2367 "That did not come out right. Don’t know where call my wife came from. I will..." + (show)
@marilynredder2367

That did not come out right. Don’t know where call my wife came from. I will write again soon I have developed a speech impediment and have half a paralyzed tongue due to GCA so I like instead of speaking. I love a gift from GCA which really doesn’t only deal with large vessels.

Jump to this post

Hopefully you can see better today…
Feel better

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SusanEllen66 | @SusanEllen66 | Aug 5, 2022
In reply to @minijohn "My temporal biopsy was done by a general surgeon and was scheduled almost immediately once referred..." + (show)
@minijohn

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

Jump to this post

My biopsy is scheduled for this coming Thursday, Aug 11.
The surgeon suggested that my problem might not be GCA, but rather Trigeminal Neuralgia. My scalp is really sore especially after moving the muscles on my face or lightly stroking my hair…
My vision has been fine

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dmoonchild | @dmoonchild | Aug 9, 2022

Hope you are feeling better 👍

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SusanEllen66 | @SusanEllen66 | Aug 10, 2022

@marilynredder2367
How is your eye? I’m assuming that it is better and you can see the bright and sunny things around you!

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1 reply
marilynredder2367 | @marilynredder2367 | Aug 10, 2022

Good move. Smart lady.

REPLY
marilynredder2367 | @marilynredder2367 | Aug 10, 2022
In reply to @SusanEllen66 "@marilynredder2367 How is your eye? I’m assuming that it is better and you can see the..." + (show)
@SusanEllen66

@marilynredder2367
How is your eye? I’m assuming that it is better and you can see the bright and sunny things around you!

Jump to this post

Yes Thank you for asking. Colors are unbelievable. How are you?

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Aug 10, 2022
In reply to @marilynredder2367 "Yes Thank you for asking. Colors are unbelievable. How are you?" + (show)
@marilynredder2367

Yes Thank you for asking. Colors are unbelievable. How are you?

Jump to this post

I’m frustrated. Tomorrow (Thursday) I am having the biopsy done on my temporal artery.
I’m hoping they find inflammation…
The prednisone is making me crazy so I’m trying not to freak out!
I’m glad you are enjoying your new vision

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