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 10, 2022
In reply to @SusanEllen66 "I’m frustrated. Tomorrow (Thursday) I am having the biopsy done on my temporal artery. I’m hoping..." + (show)
@SusanEllen66

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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Don’t be disappointed if they don’t. I had both sides done and nothing. So I was treated based on the ESR. Are you familiar with Actemra.

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1 reply
SusanEllen66 | @SusanEllen66 | Aug 10, 2022
In reply to @marilynredder2367 "Don’t be disappointed if they don’t. I had both sides done and nothing. So I was..." + (show)
@marilynredder2367

Don’t be disappointed if they don’t. I had both sides done and nothing. So I was treated based on the ESR. Are you familiar with Actemra.

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First, what is ESR?

And no, I don’t know Actemra 🤷🏻‍♀️

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 11, 2022
In reply to @SusanEllen66 "First, what is ESR? And no, I don’t know Actemra 🤷🏻‍♀️" + (show)
@SusanEllen66

First, what is ESR?

And no, I don’t know Actemra 🤷🏻‍♀️

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Hi @SusanEllen66, Here's some info on Erythrocyte Sedimentation Rate (ESR)...

"Based on Mayo Clinic clinical laboratory reporting, an ESR value of ≤22 mm/hour in men or ≤29 mm/hour in women was considered normal regardless of age. A normal CRP was defined as a value of ≤8 mg/L in all patients regardless of age."
-- Utility of Erythrocyte Sedimentation Rate and C-Reactive Protein for the Diagnosis of Giant Cell Arteritis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3307891/

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marilynredder2367 | @marilynredder2367 | Aug 11, 2022
In reply to @SusanEllen66 "First, what is ESR? And no, I don’t know Actemra 🤷🏻‍♀️" + (show)
@SusanEllen66

First, what is ESR?

And no, I don’t know Actemra 🤷🏻‍♀️

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ESR indicates inflammation in the body. So does CRP.
ESR is your sedimentation rate. Google it. Should have been done immediately. Actemra is drug used with or without prednisone to bring down inflammation. That’s the brand name. Made by Astra Zeneca. Google Actemra. It is a biological. You need to read about this drug and GCA. You need to read about trials and new drugs for autoimmune diseases.

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1 reply
SusanEllen66 | @SusanEllen66 | Aug 11, 2022
In reply to @marilynredder2367 "ESR indicates inflammation in the body. So does CRP. ESR is your sedimentation rate. Google it...." + (show)
@marilynredder2367

ESR indicates inflammation in the body. So does CRP.
ESR is your sedimentation rate. Google it. Should have been done immediately. Actemra is drug used with or without prednisone to bring down inflammation. That’s the brand name. Made by Astra Zeneca. Google Actemra. It is a biological. You need to read about this drug and GCA. You need to read about trials and new drugs for autoimmune diseases.

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Every single inflammatory marker for me is zilch. Therefore my frustration.

I just had the biopsy and have to wait for results. Doc said early next week.

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1 reply
kmeikle1 | @kmeikle1 | Aug 12, 2022
In reply to @SusanEllen66 "Every single inflammatory marker for me is zilch. Therefore my frustration. I just had the biopsy..." + (show)
@SusanEllen66

Every single inflammatory marker for me is zilch. Therefore my frustration.

I just had the biopsy and have to wait for results. Doc said early next week.

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@SusanEllen66 My markers are normal as are about 20% of all of us with PMR

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1 reply
SusanEllen66 | @SusanEllen66 | Aug 12, 2022
In reply to @kmeikle1 "@SusanEllen66 My markers are normal as are about 20% of all of us with PMR" + (show)
@kmeikle1

@SusanEllen66 My markers are normal as are about 20% of all of us with PMR

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Just got my biopsy results. Negative for Arteritis.

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kmeikle1 | @kmeikle1 | Aug 13, 2022

@SusanEllen66 Good news and glad to hear. Thanks. A positive GCA biopsy is difinitive; a negative can mean they didn't biopsy the right place in the artery. This is only useful information if you are still suffering GCA symptoms. If you are, and you respond well to prednisone that could still indicate you have GCA. Hopefully that's not the case.

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1 reply
joeblo746 | @joeblo746 | Aug 17, 2022

PMR & GCA are not really well understood at all are they? It makes it hard to convince the doctor that you're telling the truth about the pain if there isn't a consistently reliable test indicating you have this disease.

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marilynredder2367 | @marilynredder2367 | Aug 17, 2022

So was the biopsy negative

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