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 18, 2022
In reply to @kmeikle1 "@SusanEllen66 Good news and glad to hear. Thanks. A positive GCA biopsy is difinitive; a negative..." + (show)
@kmeikle1

@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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Thanks but so far I still haven’t felt much better. I know something is wrong but whatever it is can’t be found…
The prednisone is not helping so I’m tapering myself slowly. I can’t stay on a high dose for a long time. My mental health is not doing well on this stuff…
I’m praying for an answer to this mystery.

REPLY
1 reply
Teri | @tsc | Aug 19, 2022
In reply to @SusanEllen66 "Thanks but so far I still haven’t felt much better. I know something is wrong but..." + (show)
@SusanEllen66

Thanks but so far I still haven’t felt much better. I know something is wrong but whatever it is can’t be found…
The prednisone is not helping so I’m tapering myself slowly. I can’t stay on a high dose for a long time. My mental health is not doing well on this stuff…
I’m praying for an answer to this mystery.

Jump to this post

Hi @SusanEllen66, if prednisone isn't working, the dosage may be too low for GCA. If you are on a high dosage and it still isn't working, odds are you have something else. When the condition doesn't respond to prdnisone, the diagnostic algoritm in Cecil and Goldman's Textbook of Medicine says to consider Malignancy, Infection, Connective tissue disorder, Hypothyroidism. I guess if PMR and GCA atre ruled out, you have to relentlessly ask your doctors what else could it be?

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Aug 19, 2022
In reply to @tsc "Hi @SusanEllen66, if prednisone isn't working, the dosage may be too low for GCA. If you..." + (show)
@tsc

Hi @SusanEllen66, if prednisone isn't working, the dosage may be too low for GCA. If you are on a high dosage and it still isn't working, odds are you have something else. When the condition doesn't respond to prdnisone, the diagnostic algoritm in Cecil and Goldman's Textbook of Medicine says to consider Malignancy, Infection, Connective tissue disorder, Hypothyroidism. I guess if PMR and GCA atre ruled out, you have to relentlessly ask your doctors what else could it be?

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I’ve been taking 60mg of prednisone.
My Rheumatologist and I are going back to square one.
I was diagnosed in 2015 with Polyarthritis Nodosa PAN, a rare Vasculitis. That damaged my nerves so I have peripheral neuropathy.
She believes that the PAN has now possibly damaged my cranial nerves.
So, I don’t have GCA. It’s probably “just” the lethal PAN causing the trouble.
Unfortunately, the best treatment for my PAN is Rituxan, and that affects my lungs…
Thanks for your thoughts.

REPLY
1 reply
Teri | @tsc | Aug 20, 2022
In reply to @SusanEllen66 "I’ve been taking 60mg of prednisone. My Rheumatologist and I are going back to square one...." + (show)
@SusanEllen66

I’ve been taking 60mg of prednisone.
My Rheumatologist and I are going back to square one.
I was diagnosed in 2015 with Polyarthritis Nodosa PAN, a rare Vasculitis. That damaged my nerves so I have peripheral neuropathy.
She believes that the PAN has now possibly damaged my cranial nerves.
So, I don’t have GCA. It’s probably “just” the lethal PAN causing the trouble.
Unfortunately, the best treatment for my PAN is Rituxan, and that affects my lungs…
Thanks for your thoughts.

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I'm glad that you have a diagnosis and wish you the best.

REPLY
dbyrne | @dbyrne | Sep 6, 2023

I was recently diagnosed with large cell arteritis. I am currently on prednisone, my Dr. is recommending I go on Actemra, either by injection or infusion. Does anyone have any experience with this drug? I have a real concern with the side effects that are listed.

REPLY
2 replies
mariajean03 | @mariajean03 | Sep 6, 2023
In reply to @dbyrne "I was recently diagnosed with large cell arteritis. I am currently on prednisone, my Dr. is..." + (show)
@dbyrne

I was recently diagnosed with large cell arteritis. I am currently on prednisone, my Dr. is recommending I go on Actemra, either by injection or infusion. Does anyone have any experience with this drug? I have a real concern with the side effects that are listed.

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I don't but I'm on Entyvio. It's not doing the job and I've developed skin cancer from it. I would go with the most common side effects and seek a second opinion if needed. I have severe UC and very frustrated by my Dr. Maria.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Sep 6, 2023
In reply to @dbyrne "I was recently diagnosed with large cell arteritis. I am currently on prednisone, my Dr. is..." + (show)
@dbyrne

I was recently diagnosed with large cell arteritis. I am currently on prednisone, my Dr. is recommending I go on Actemra, either by injection or infusion. Does anyone have any experience with this drug? I have a real concern with the side effects that are listed.

Jump to this post

Hi @dbyrne, I moved your discussion and combined it with an existing discussion titled:

- Think I have Giant Cell Ateritis (or GCA)
https://connect.mayoclinic.org/discussion/think-i-have-gca

I did this so you could meet members like @pickle7 who also talked about Actemra.

@dbyrne, what side effects in particular are you most concerned about?

REPLY
2 replies
marcia115 | @marcia115 | Sep 17, 2023
In reply to @JustinMcClanahan "Hi @dbyrne, I moved your discussion and combined it with an existing discussion titled: - Think..." + (show)
@JustinMcClanahan

Hi @dbyrne, I moved your discussion and combined it with an existing discussion titled:

- Think I have Giant Cell Ateritis (or GCA)
https://connect.mayoclinic.org/discussion/think-i-have-gca

I did this so you could meet members like @pickle7 who also talked about Actemra.

@dbyrne, what side effects in particular are you most concerned about?

Jump to this post

dbyrne, they think I have Giant Cell Arteritis, I had a tooth pulled in June and
I had a headache every day for a month, and they put me on prednisone, starting at 40 mg for
two weeks. It took the headache away, but they took me off too fast and the headache returned,
now I am back on it going off very slowly. I have to have an ultrasound on my left temple, an MRI on my brain, then a biopsy, and then they will know if I have it, How do they know for sure you have
this? and all of you that are reading this, how do you know for sure this is what you have?
marcia115

REPLY
1 reply
dbyrne | @dbyrne | Sep 17, 2023
In reply to @marcia115 "dbyrne, they think I have Giant Cell Arteritis, I had a tooth pulled in June and..." + (show)
@marcia115

dbyrne, they think I have Giant Cell Arteritis, I had a tooth pulled in June and
I had a headache every day for a month, and they put me on prednisone, starting at 40 mg for
two weeks. It took the headache away, but they took me off too fast and the headache returned,
now I am back on it going off very slowly. I have to have an ultrasound on my left temple, an MRI on my brain, then a biopsy, and then they will know if I have it, How do they know for sure you have
this? and all of you that are reading this, how do you know for sure this is what you have?
marcia115

Jump to this post

Dear Marcia115: I started with headaches, fatigue, weight loss & jaw pain. Then one day I lost sight in my right eye; it came back in few minutes, then it happened again. My Dr. had me go to ER, she thought I may of had a mini stroke. Spent 4 days in hospital, many tests, cat scans, MRI, Drs thought it was Giant cell arteritis & that was confirmed by a biopsy of the artery along my hairline above my eye. I started on 60 milligrams of Prednisone daily, I am now down to 12.5, next week 10, & am waiting to start Actemra by injection.

REPLY
1 reply
dbyrne | @dbyrne | Sep 17, 2023
In reply to @JustinMcClanahan "Hi @dbyrne, I moved your discussion and combined it with an existing discussion titled: - Think..." + (show)
@JustinMcClanahan

Hi @dbyrne, I moved your discussion and combined it with an existing discussion titled:

- Think I have Giant Cell Ateritis (or GCA)
https://connect.mayoclinic.org/discussion/think-i-have-gca

I did this so you could meet members like @pickle7 who also talked about Actemra.

@dbyrne, what side effects in particular are you most concerned about?

Jump to this post

I am concerned about getting a serious infection, increasing my blood pressure (I am on blood pressure medication) & the increased risk getting cancer.

REPLY
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