The Australian Sjögren's Syndrome Association
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Shingles and Sjorgens

Hi All,

I thought I had an insect bite, but it developed over a couple of days, into shingles. Spent Easter Sunday at out of hours GP service. Joy!! The nerve pain in my jaw, teeth and tongue is grim and some swelling in my face, and a load of rashes. I've been given anti virals ( 800mg 5x per day) Acliclover, to speed up recovery and stop the spread. Doc assured me it will work OK with existing meds incl hydroxychloroquine.

Needless to say, sjorgens symptoms worse now. Really fed up, as I was being more positive about managing everything and finally able to walk further , do more etc. now this feels like a big setback.

Anyone got any advice how to manage Shingles and Sjorgens?

Claire

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I've been lucky enough to escape shingles but unlucky to have small fibre neuropathy everywhere including around my mouth, nose and left eye. So I can sympathise enormously with the pain although in my case the cause is presumed to be Sjögren's itself. Hopefully yours is only going to be painful for a very finite time now until the antiviral works. This was what my friends who have suffered shingles have experienced anyway so🤞🏽🤞🏽🤞🏽

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You poor thing ☹️Ive never had shingles but my aunt did and it was sore . I hope the treatment works soon and you get some relief. Do rest up if you are feeling poorly, lots of positive thoughts beginning sent your way 💐💐💐💐💐

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I was vaccinated in January against shingles

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That's Sjogren's, right when you think you have it under control it throws you another curve ball

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Oh yes it's definitely a curve ball! I thought things were more manageable until this hit me. I've been to the docs today about it to get more advice / check out some symptoms in my ear and throat. Doctor said " it's unusual , I've never seen it in the mouth and throat before...". I've been advised to increase the nortriptiline I take, and also to take X1 10mg in the day to help the neurological pain. Fingers crossed for some respite soon.

Thanks for the comments x

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I've had shingles twice now. Once you are clear for 12 months you can have the vaccine

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