Shingles and GCA

[WHL67]

Hi good people I’m curious to know if anybody here has after being diagnosed with GCA which I’m on 40mg pred, then after a few months ends up with shingles in my head, left side of face, I’ve now had shingles for a 4th week and really struggling with the pain. It’s so difficult to distinguish between GCA pain and shingle pain, half the time I don’t know what I’m treating!!

Doc has put me on valaciclovir, amytryptyline and co-codamol plus diazepam for help sleeping.

I’d appreciate any thoughts good people!!

[Sharitone]

Nothing helpful to offrer, but I've had oth at different times, and you have all my sympathy. If you didn't get the anti-viral in time, then I fear you may feel washed out for a long time. Took me 4 months to recover from shingles. I was also diagnosed at the end of November, and the GP said, 'Rest a lot over Christmas'! I was taken aback, but he was right.

[WHL67 in reply to Sharitone]

thanks sharitone I think I’m in the same boat as you were as it seemed to me at the time that the head and neck pain was down to GCA unfortunately it wasn’t!! I only hope it doesn’t last 4 months , what a horrible, painful disease shingles is☹️

[PMRpro Ambassador in reply to WHL67]

It is the post-herpetic neuralgia that hangs on and can be very debilitating.

[WHL67 in reply to PMRpro]

This post-herpetic neuralgia sounds very nasty and difficult to get rid of!! I'm off to see my GP today to see what we can do about. Stronger morphine would help 🤬

[PMRpro Ambassador in reply to WHL67]

It is - and probably the main reason for having the Shingrix shingles vaccine which reduces the likelihood of the neuralgia

[WHL67 in reply to PMRpro]

vaccine booked and for the wife, hopefully get on top of this bloody thing !!!

[PMRpro Ambassador in reply to WHL67]

You do have to wait a while after having shingles I think - and there is variable info in the internet. One says it must be a year which is rubbish! But generally it is is "once the rash is gone. And make sure it is the Shingrix you get - approved by the NHS for autoimmune disorder patients. You probably need to warn them as sometimes it must be ordered for you.

health.harvard.edu/diseases...

[Sophiestree]

I can't help as I had shingles around my torso and pre LVV, but you poor thing, it sounds hideous and with GCA on top, no wonder you don't know what is what. Sending you lots of sympathy and hoping you are on the final track with the shingles at least.

[WHL67 in reply to Sophiestree]

Thanks for your kind words Sophiestree and yes let's hope I've turned the corner and kicked this horrendous disease in to touch!!

[SnazzyD]

Hello, shingles pain is in a category all of it’s own! I had it twice (not badly) after diagnosis with GCA but can’t remember at which point, though one was at the low dose end when I had poor adrenal function. On these upper dose levels, you are immunosupressed so it’s more likely that the virus lying dormant in your body can escape capitity and run amok. It’s good you are on the proper treatment because being immunosupressed you can’t hang about before seeking help.

[PMRpro Ambassador]

Griggser had shingles badly about 18 months ago - PMR not GCA though.