A very helpful member on this site diagnosed my GCA before I saw a Locum at my Docs: she probably saved my sight.
At a party yesterday I learned that a friend of mine arriving from South Africa had the symptoms ignored and Is now blind in both eyes. She’s living with her daughter sone distance away but I’m shocked that The GCA diagnosis was only made in hindsight. This forum is literally a life saver.
may I also add that like me she had shingles: this seems to coincide with GCA in the majority of cases according to research on the subject
That’s a sad story.
I didn’t have shingles but in the months up to the GCA going wild, I had frequent cold sores. I remember thinking at the time it wasn’t normal.
herpes shingles cold sores seem to be the same disease
Different virus. However, we can’t say whether the shingles/herpes were there because the body was seriously but not yet obviously run down prior to symptoms of GCA. I guess we’ll never know.
Of course you are right HPV is not the same as VZV - the effects are similar though and occur when the body is low or stressed
how did you or are you coping with the shingles. I’m now on my fifth week of diagnosis as well as GCA I must say the most painful 5 weeks of my life! My shingles is top and back of my head so it gets confusing sometimes is it GCA or shingles.
Doc has put me on liquid morphine to try and get on top of the horrendous head and face/neck pain!!
I wish you well Lollybygolly
the moment I saw shingles my doc gave me an antiviral to counteract nerve pain. I’m sorry you didn’t get treatment straight away. That’s awful! Mine went away within a week on Aciclovir?sp? Thank goodness. Take care and be blessed
Unfortunately it’s still happening all too often …….I had already lost sight in one eye pre-diagnosis (18 months with symptoms) which is why I’m always banging on about the dangers of undiagnosed GCA.
Commiserations to your friend. 🌸
post note - no shingles, nor any other virus involved in my case. ..just lack of knowledge - mine (at the time) and my GP’s.
We know we have directed quite a few people to go to the ED with potential GCA symptoms that were then confirmed.
In fact, if you were to examine everyone on this forum, it is likely you would find the herpes virus since our generation has almost all had CP, even if we didn't know it. That paper was a one-off and to my knowledge hasn't been confirmed. But the likelihood is there are more who have had CP who haven't had GCA than the other way round.
What is CP ?
Chicken Pox, I believe!
I am so glad that you got seen before your sight was impaired. Sight is a very precious thing.
because of the lockdown I turned to painting and I made 200 or so very highly coloured acrylics on canvas wood plaster etc which I’m immensely proud of. They’re selling well and I’m happy I had that experience which would have been denied me had I gone blind. Thank you people and thank God. My go- to Angel Michael was there too. He’s been a subject for several of my pictures amid the chaos.
That is fantastic, I love the colours. You are very talented.
thanks piglette - most are more water based… pointillist and abstracts but I had so much free time on my hands.
It is so good to do such beautiful things rather than just sitting around getting depressed.
I learned so much from the internet especially YouTube. I’ve taught loads of my friends and family about paint pouring which honestly children can do amd the results using the many techniques are wonderful😅
you made that! Awesome.
hi,
I’m so sorry about your friend’s sight. Interestingly I also had shingles 3 times in my eye, the first time was all over my head and eye and nose, it took a long time to clear up, the second time was actually in my eye which was extremely painful and again the third time in my eye. I was then diagnosed with GCA.
I’m sure there is a connection, when I mentioned this to a on call rheumatologist ( not my usual rheumatologist)he seemed astounded, said he’d never heard of this but I’m sure I’ve read somewhere there is a connection.
Hope you get better soon
Stelara/ustekinumab for GCA treatment
update on my mum- blind from GCA
GCA treatment
Clinic Note: GCA patient is completely non compliant with my excellent treatment plan.
