1. < Polymyalgia Rheumatica (PMR)
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Giant Cell Arteritis

Posted by momac59 @momac59, 5 days ago

I was diagnosed with Systemic Lupus about 30 years ago at 37. It’s been pretty mild but for the last 6 weeks I’ve been really sick. My current Rheumatologist thinks it’s one of the PMR autoimmune diseases called Giant Cell Arteritis. My inflammatory markers are through the roof; CRP 266 & ESR 78. Still waiting for all the test results to come in but in the meantime steroid injection has not helped much. I’m really worried about my eyes; have had problems losing vision especially in the last 6 months. Anyone can share more about GCA? I’ve been reading up on it but would appreciate hearing experiences from other patients. Thank you.

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momac59 | @momac59 | 3 days ago
In reply to @tsc "@johnbishop Hi @momac59, I had PMR and GCA, undiagnosed for a year. With the GCA, three..." + (show)
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@johnbishop
Hi @momac59, I had PMR and GCA, undiagnosed for a year. With the GCA, three incidents of visual disturbance in my right eye which lasted about 10 minutes. I could only see white out of my right eye. I had a temporal artery biopsy and was positive for GCA. I started on prednisone 40 mg and tapered every two weeks. I was okay for a year, then relapsed and did the prednisone treatment again. A doctor friend told me if I ever had visual disturbance again to go to the ER immediately.
Did you get a temporal artery biopsy?
I hope you can get to the bottom of this and get effective treatment.

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@tsc thanks for all the information. My bloodwork results are still coming in so haven’t had the biopsy yet. Unfortunately, I don’t do well with prednisone so Rheumatologist gave me a shot of Kenalog which seems to finally be helping a bit. But I was warned about the white light or any drastic change in eyesight or severe headache; that I need to get to ER. I live in Mesa, AZ & am SO relieved that Mayo has changed their mind & are squeezing me into their Rheumatologists after I gave them more information about my condition. I just have to wait a month. Hopefully there they will do the biopsy to confirm & come up with a treatment plan that avoids steroids??

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momac59 | @momac59 | 3 days ago

Thanks everyone for your very helpful information. This had been such a scary experience, feeling so alone & overwhelmed. Your taking the time to share has made me feel a little more hopeful and definitely not alone. Thank you!

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ess77 - Elizabeth | @ess77 | 7 hours ago
In reply to @momac59 "Thanks everyone for your very helpful information. This had been such a scary experience, feeling so..." + (show)
Profile picture for momac59 @momac59

Thanks everyone for your very helpful information. This had been such a scary experience, feeling so alone & overwhelmed. Your taking the time to share has made me feel a little more hopeful and definitely not alone. Thank you!

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@momac59 and all... I suddenly developed both PMR and GCA following a 2nd bout with Covid in 2023. PMR hit first and was extremely traumatic. Severe pain in both shoulders and hips, unable to move, change positions in bed, unable to turn over, really fun getting out of bed to to to potty!!!

My doc put me on 15-20 mg Prednisone that helped a bunch.Then the GCA hit me with pain in both temples and sight changes, thankfully not white light or that drastic. This was a double shot of autoimmune diesases I'd never heard of brought on by Covid. My rheumatologist started me on Methotrexate for the GCA. It worked. I was on both Methotrexate and Presnisone for several month when my liver functions began to go wonky. So, as Methotrexate can play with the liver, my doc reduced and took me off Methotrexate and liver functions were/are no normal.

Suggest you ask to be put on the wait list for a sooner appointment if you are concerned about the month wait. I do that when I feel an urgency to get some testing and answers and almost always get a better time to see the doc. Or, at least for the testing...

Wishing you well and blessings... Elizabeth

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purplebike | @purplebike | 3 hours ago
In reply to @ess77 "@momac59 and all... I suddenly developed both PMR and GCA following a 2nd bout with Covid..." + (show)
Profile picture for ess77 - Elizabeth @ess77

@momac59 and all... I suddenly developed both PMR and GCA following a 2nd bout with Covid in 2023. PMR hit first and was extremely traumatic. Severe pain in both shoulders and hips, unable to move, change positions in bed, unable to turn over, really fun getting out of bed to to to potty!!!

My doc put me on 15-20 mg Prednisone that helped a bunch.Then the GCA hit me with pain in both temples and sight changes, thankfully not white light or that drastic. This was a double shot of autoimmune diesases I'd never heard of brought on by Covid. My rheumatologist started me on Methotrexate for the GCA. It worked. I was on both Methotrexate and Presnisone for several month when my liver functions began to go wonky. So, as Methotrexate can play with the liver, my doc reduced and took me off Methotrexate and liver functions were/are no normal.

Suggest you ask to be put on the wait list for a sooner appointment if you are concerned about the month wait. I do that when I feel an urgency to get some testing and answers and almost always get a better time to see the doc. Or, at least for the testing...

Wishing you well and blessings... Elizabeth

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@ess77 I was also diagnosed with GCA about 100 days after I had Covid (1st time). I was wondering whether Covid was the trigger. There is a scientific article written about an increase in GCA diagnoses during the pandemic in Bath, England, but the sample size was too small to establish a statistical relationship. Did anyone else get GCA after having Covid?

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