Adjusting to life with temporal arteritis

Posted by MLeeB @MLeeB, Mar 21, 2016

Would like to hear from people that have gone thru or going thru temporal artritis. I am now going on my 5 month after being diagnosed. It is getting better but very slowly. Is this normal?

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@becsbuddy

@sophie32 You said that you were diagnosed with Giant Cell Arteritis by a rheumatologist and that he suggested that you change your diet. Did he also give you medications to take or suggest a plan of care?

This information may be of some interest
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758

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This is my diagnosis and care plan for Giant Cell Arteritis : On the morning of January 27,2021 my ophthalmologist did a vision test and field of vision test. I was delighted as my vision tested at near 20/20, corrected, better than usual. I returned home, decided I should check with my Internal Medicine Dr. on the dark hard veins that had appeared on my forehead under my shaggy quarantine hairdo a few days ago, and had not mentioned to the Ophthalmologist. I was told to come in as soon as I could although I had no other symptoms. The Internal Medicine Doctor, felt the "veins", which were actually arteries, and immediately ordered C-RP and Sedimentation Rate blood tests, read the results, which were elevated.. He ordered a biopsy for next day by a Rheumatologist who diagnosed GCA, but as far as I know is not part of the care plan. I was put on 40 mg Prednisone for 20 days, then 30 mg for 9 days before the biopsy was read. I protested that, but took the drug anyway. I had a facetime visit by phone with my Internal Med Doctor, who is in charge of my treatment, a week later. My second C-RP and Sed test was yesterday, which is one month after my first ones., Apparently inflammation was wiped out.
My readings: Sed rate:Auto on Jan 27 was 67, on Feb 25 was 3 (0 -30 mm/hr) .
C-Reactive Protein on Jan 27 was 3.90 and on Feb 25 was less than 0.30 (0.00 – 0.50 mg/dL
My Prednisone dose is now cut to 20 mg/day.

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@sophie32

This is my diagnosis and care plan for Giant Cell Arteritis : On the morning of January 27,2021 my ophthalmologist did a vision test and field of vision test. I was delighted as my vision tested at near 20/20, corrected, better than usual. I returned home, decided I should check with my Internal Medicine Dr. on the dark hard veins that had appeared on my forehead under my shaggy quarantine hairdo a few days ago, and had not mentioned to the Ophthalmologist. I was told to come in as soon as I could although I had no other symptoms. The Internal Medicine Doctor, felt the "veins", which were actually arteries, and immediately ordered C-RP and Sedimentation Rate blood tests, read the results, which were elevated.. He ordered a biopsy for next day by a Rheumatologist who diagnosed GCA, but as far as I know is not part of the care plan. I was put on 40 mg Prednisone for 20 days, then 30 mg for 9 days before the biopsy was read. I protested that, but took the drug anyway. I had a facetime visit by phone with my Internal Med Doctor, who is in charge of my treatment, a week later. My second C-RP and Sed test was yesterday, which is one month after my first ones., Apparently inflammation was wiped out.
My readings: Sed rate:Auto on Jan 27 was 67, on Feb 25 was 3 (0 -30 mm/hr) .
C-Reactive Protein on Jan 27 was 3.90 and on Feb 25 was less than 0.30 (0.00 – 0.50 mg/dL
My Prednisone dose is now cut to 20 mg/day.

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Were you experiencing headaches? Did the dark veins just suddenly appear?

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@kimh

Were you experiencing headaches? Did the dark veins just suddenly appear?

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I noticed dark veins about 7 days before the biopsy. I did not pay much attention, I thought maybe it was a rare Covid related thing, and decided to check it out. I literally had no other symptoms. I should add that I rarely get headaches except for sinus ones. I took probably 5 regular strength Tylonol for mild discomfort during the past month.
I have not seen anything like my experience on the Internet or in a posting, so I decided to just post what happened. GCA gone in a month? Of course the tapering off the steroid may be a different story. My care will be from my Internal Medicine Dr. I am not sure at this point how sudden vision loss would be handled or if it is likely. Thanks for your interest.

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Good morning …I was diagnosed in August last year after a biopsy. I am 72 yrs. old and this was done with local freezing. I was apprehensive at first but it was not even uncomfortable. It took a total of 15 minutes and with the freezing in, I did not feel anything. The dr. made a small incision with a laser just in front of my left ear and there were no stitches….just a butterfly bandaid. Hope this helps ease your concerns..

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@sophie32

I noticed dark veins about 7 days before the biopsy. I did not pay much attention, I thought maybe it was a rare Covid related thing, and decided to check it out. I literally had no other symptoms. I should add that I rarely get headaches except for sinus ones. I took probably 5 regular strength Tylonol for mild discomfort during the past month.
I have not seen anything like my experience on the Internet or in a posting, so I decided to just post what happened. GCA gone in a month? Of course the tapering off the steroid may be a different story. My care will be from my Internal Medicine Dr. I am not sure at this point how sudden vision loss would be handled or if it is likely. Thanks for your interest.

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Yes, you sound like a 'special' case! But very good to know. I have suddenly starting coming down with migraines again. I hadn't suffered one for about 16 years, so something has changed. My rheumatologist is a little concerned about my PMR progressing to GCA. I am praying not! I have not noticed bulging veins and the headaches are not constant, so that is why I wanted to know if your onset of GCA was sudden.

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@kimh

Yes, you sound like a 'special' case! But very good to know. I have suddenly starting coming down with migraines again. I hadn't suffered one for about 16 years, so something has changed. My rheumatologist is a little concerned about my PMR progressing to GCA. I am praying not! I have not noticed bulging veins and the headaches are not constant, so that is why I wanted to know if your onset of GCA was sudden.

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@kimh. My onset to GCA was gradual, and unfortunately not recognized as such by E.R. doctors until I presented with loss of vision in my right eye. I was feeling very unwell, had "head pain" mostly on right side, fatigue, and had gone to E.R. five weeks in a row without that diagnosis.
I'm relieved you're in the care of a rheumatologist. Headaches are one of the symptoms of GCA. Mine presented as right-sided temporal pain at first, not headaches. My scalp was also very sensitive to touch, and somewhat painful too.

I'd suggest you research Giant Cell Arteritis on the Mayo Clinic site, if you haven't already. Knowledge is power!

Wishing you improved health soon.
Laurie

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@angelbear4

Good morning …I was diagnosed in August last year after a biopsy. I am 72 yrs. old and this was done with local freezing. I was apprehensive at first but it was not even uncomfortable. It took a total of 15 minutes and with the freezing in, I did not feel anything. The dr. made a small incision with a laser just in front of my left ear and there were no stitches….just a butterfly bandaid. Hope this helps ease your concerns..

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@angelbeard4. I had the very same easy time of it when undergoing the GCA biopsy. Not scarey at all.

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@sophie32

I noticed dark veins about 7 days before the biopsy. I did not pay much attention, I thought maybe it was a rare Covid related thing, and decided to check it out. I literally had no other symptoms. I should add that I rarely get headaches except for sinus ones. I took probably 5 regular strength Tylonol for mild discomfort during the past month.
I have not seen anything like my experience on the Internet or in a posting, so I decided to just post what happened. GCA gone in a month? Of course the tapering off the steroid may be a different story. My care will be from my Internal Medicine Dr. I am not sure at this point how sudden vision loss would be handled or if it is likely. Thanks for your interest.

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@sophie32 I've been fighting GCA since 2018. It's never a short term issue. Glad you're in the care of a specialist. Steroids are one of the important medications for controlling the symptoms. I was on Prednisone for 1 1/2 years, and have been on weekly Actemra injections since November of 2019.
Warmest regards,
Laurie

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@artist01

@kimh. My onset to GCA was gradual, and unfortunately not recognized as such by E.R. doctors until I presented with loss of vision in my right eye. I was feeling very unwell, had "head pain" mostly on right side, fatigue, and had gone to E.R. five weeks in a row without that diagnosis.
I'm relieved you're in the care of a rheumatologist. Headaches are one of the symptoms of GCA. Mine presented as right-sided temporal pain at first, not headaches. My scalp was also very sensitive to touch, and somewhat painful too.

I'd suggest you research Giant Cell Arteritis on the Mayo Clinic site, if you haven't already. Knowledge is power!

Wishing you improved health soon.
Laurie

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I am currently on three mgs of prednisone. Will probably remain there. Sed rate is good but crp remains high. So glad to have people to discuss this however so sorry you are going through it.

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@artist01

@sophie32 I've been fighting GCA since 2018. It's never a short term issue. Glad you're in the care of a specialist. Steroids are one of the important medications for controlling the symptoms. I was on Prednisone for 1 1/2 years, and have been on weekly Actemra injections since November of 2019.
Warmest regards,
Laurie

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Not familiar with they medication . What is it and is it helping! I have dealing with this for many years . So right it is not short term.

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@654321

Not familiar with they medication . What is it and is it helping! I have dealing with this for many years . So right it is not short term.

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@654321 Actemra, otherwise known as Tocilizumab, is given by injection. When researched online, it claims to be the one and only treatment for Giant Cell Arteritis. It's much easier on the system than Prednisone. I've found it to be helpful for easing the pain and symptoms of GCA.

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@artist01

@kimh. My onset to GCA was gradual, and unfortunately not recognized as such by E.R. doctors until I presented with loss of vision in my right eye. I was feeling very unwell, had "head pain" mostly on right side, fatigue, and had gone to E.R. five weeks in a row without that diagnosis.
I'm relieved you're in the care of a rheumatologist. Headaches are one of the symptoms of GCA. Mine presented as right-sided temporal pain at first, not headaches. My scalp was also very sensitive to touch, and somewhat painful too.

I'd suggest you research Giant Cell Arteritis on the Mayo Clinic site, if you haven't already. Knowledge is power!

Wishing you improved health soon.
Laurie

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Thank you for all the information. Were the pains on your right side continual?

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