My friend rang me yesterday with surprising news. Her friend has been diagnosed with GCA. She could not believe it. Apparently her friend was not feeling well and decided to pay to visit one of these walk in clinics. She had been having a lot of jaw pain and had been off her food. After about forty five minutes or so the Doctor returned. He said she had all the classic symptoms of GCA but he had never actually met anyone with it before. My friend was able to tell her too before she actually named it what she had. Is it getting more common?
Surprise: My friend rang me yesterday... - Positive Wellbein...
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What is GCA please?
in reply to RoadRunner44
Hi RoadRunner44, It stands for giant cell arteritis which causes inflammation of the arteries particularly in the area of the temples and causing among other symptoms, frequent headaches. It's a serious condition needing treatment quite urgently to prevent other serious effects like stroke arising. It's most often treated with steroids. I hope that helps.
I think personally that like many health problems it is a case of more easily confirmed with tests being more available and faster results being given.
I know two people with this very unpleasant diagnosis, I your friends friend get suitable treatment which works well for her.
Ellie
Would like to know what GCA is as well never heard of .🥴
Giant Cell Arteritis. It is inflamation of the cell walls of the arteries.
hugs
Oh dear I am sorry to hear this, I hope your friend’s friend gets well soon.
It’s Giant Cell Arteritis - or temporal arteritis - inflammation of the large blood vessels. My gran had it 13 years ago - she recovered quickly.
I was diagnosed with this a few years ago, my Esr was off the scale, had all the symptoms, my head was so sore and tender, I cudnt even stand water running on it or lie on a pillow, I have never sweated so much in bed that night. When I saw my Gp, she said it was prob flu but did a blood test and the results told her I needed to go on high dose of steroids immediately. A month later I was referred to a rheumatologist who wanted a biopsy from the temporal artery which I got done a month later, it was negative but told they they might not have taken the diseased bit of artery and still had to treat me for it. A year on steroids and Then was told I may not have had GCA? 🙄 I wasn’t happy.
As I understand it - having a biopsy when you had been on predisolone for so long by the time you had it would negate any result. When I had my biopsy - after being on predisolone for only a day or two - I was warned this could be the case. Fortunately my biopsy confirmed it. Like you I could not stand my head on a pillow. What was your CRP at the time your ESR was high?
I agree, I did wonder being on pred for a month, they fitted me in between surgeries,my results got a bit lost for a while and it was months before I got them only to be told it was negative. Steroids were not my fav drug to be on. I can’t remember the exact result but it was over 150, don’t know what the CRP was as I wasn’t up on those kind of tests at the time , after a month I dropped to 90 so it was coming down. It was scary and I knew it was serious as the doctor was trying to track me down to get me to go down and get on these steroids ASAP , I went back to work as I could not explain to my boss that my head was feeling weird, I had never experienced this feeling before, on hind site I should have called 999 as it can cause blindness. I was so unwell that night.
I feel for you. Hindsight is a wonderful thing. Although noone wants to be on predisolone it is very effective. More than anything it is a sight saver. It is because GCA is rare that it is not known about by many.
I had never heard of this till the doctor told me I could have temporal arteritis, even the nurses In the ward after my biopsy had never heard of it. Seemingly a special kind of Ct scan can possibly show this as well but she wanted the biopsy done as it’s the gold standard for diagnosing it, I did panic when my results went missing as I worried about getting it done again, how much can your artery stretch I wondered. Lol. It’s just amazing they can take a bit of your artery off, I take my hat off to the surgeon as it must be very fiddly to do.
Your friend is lucky to see a doctor that recognised it. There is a thread on HU for PMR/GCA and I think she will find it very helpful. vasculitis U.K. also have a helpline she can call if she needs any advice. Their website is also very informative. I hope your friend gets this under control soon and is able to reduce the steroids shortly.
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