Hello. I have ust been diagnosed with GCA three days ago on 21 Feb 2018. I'm 58 and male. Usually in good health.
My apologies if this is a bit long and nerdy: I'm just finding it useful to write all down somewhere.
My symptoms started on Christmas Day with very sensitive scalp and shooting pains in jaw and neck.
I'd recently had blood tests related to hypothyroidism so when I saw the doctor on 8 January these tests were repeated but he didn't pick up on the symptoms I'd described although he listened to my chest and commented that my aorta didn't sound quite normal.
Ever since Christmas I'd also been having muscle pain and stiffness like I'd never known before, lack of energy and depression.
I felt like I'd aged thirty years over night and couldn't do basic things like put on my pants and socks, or even bend my neck far enough to see if those pants were on the right way. there were several days I just didn't make it out of bed. Oh, and the night sweats!!! I once woke up in the morning to a pile of 8 soaking wet T shirts and pyjama bottoms!
This became the new normal. The doctor considered sending me to a rheumatologist but wanted to eliminate other possibilities first, with CT scan and x ray. She didn't put me on steroids in case these masked symptoms which actually indicated other illnesses, I guess things like lymphoma.
Friends soon started saying they had older relatives with similar symptoms which had been identified as PMR and that they'd had Prednisone for long periods. I was pretty averse to the idea of long term steroid use and was happy to go along with the doctor's softly softly approach
Blood tests on 16 January included a bone profile and showed slightly low serum albumen and plasma viscosity of 2.16. and doctor ordered more tests on 23 January, 29 January and 12 February
These showed high but falling levels of
CReactiveProten: 64, 36 and 25 and
Plasma viscosity of 2.1 1.88
By then I'd also had the chest x-ray and CT results both clear although (I now regret) I'd asked for the CT scan to be without contrast. This seemed to signal that whatever I'd had was getting better and the next blood test will be next Friday 2 March.
But on Tuesday 20 Feb I had strange visual sensations, only in bright light and when outdoors, like I'd picked up the wrong spectacles. Not exactly double vision but I think that that's because one is so dominant that my brain was able to force the images together but it was hard work.
I'd also had difficulty opening my jaw fully to eat an admittedly humungous cup cake (left over from my birthday!) and had noticed that the sound of blood pulsing in my ears was much louder than normal so, even though I didn't have the scalp sensitivity I called the doctor, a different one this time due to rostering I suppose.
She had me go the to Bristol Eye Hospital within the hour and they diagnosed GCA by the late afternoon and had me on a 1g Prednisone by IV by 7.00pm.
I have to say they were brilliant. So quick and thorough.
Had me back the next day for a temporal ultrasound. The technician was a research scientist who told me, slightly wistfully, that because he generally gets to see people who, like me, have already started Prednisone he's only ever had two positive ultrasound results. I made his day by becoming his third.
Three days of 1g by IV later and I have a big bag of Prednisone tablets, various reduction charts to follow, stomach protection, calcium pills, an appointment with a neurologist and a date for a temporal biopsy which I'm going to challenge because, having had the positive on the ultrasound, the registrar admitted was pretty redundant: by the time it happens I'll have been on Prednisone for 9 days and if it comes up negative they'll ignore it and carry on regardless.
The results have been spectacular for the PMR: woke up the first morning and almost all my pain had gone. I could get dressed, walk the dog, ride my bike. It was amazing. Vision still funny occasionally but the wooshing in my ears had stopped. Whatever lies ahead with coming off the steroids, I'm enjoying the upside for now.
However, I'm sitting up writing this at 03.59 partly because my IV was late in the afternoon and I can't sleep but mostly because I farted, as one does.
Nothing unusual (I was going to say 'nothing to see there, move along people' but that would clearly be inappropriate ) but I did also feel an unfamiliar discomfort behind my sternum and made the connection with my aorta sounding odd and references to the risk of aortic aneurysm that I'd read and glossed over in my research into GCA.
So now I'm wondering whether to get back to the hospital to ask. It's the middle of the night, it's a weekend, A&E will be chockablock. It's cosy in bed and The Beast from the East is about to strike.
That's it for now. Ironically, the next meeting of my local PMRGCA support group clashes with my neurology appointment which they can't change. I'd have liked to meet people with more experience of what I'm just starting to learn about.
36 on 29 January and 25 ..