Follow-on from GCA Relapse!

[Primarose]

I saw a doctor this morning, (not my usual). He did indeed think that I was having another flare and told me to continue on 6mgs of pred.

With regards to the stinging rash on my neck, he said it was not heat rash but looked like Shingles or maybe an allergic reaction to something. He gave me some Hydrocortisone cream.

I've had Shingles twice, each time on the right side of the temple and eye. I didn't know it could come up on the neck but having looked on a few web sites it can indeed.

If the doctor has missed Shingles is that OK??

In the Pred leaflet it states that you should avoid contact with people suffering from Chicken Pox and Shingles but doesn't mention if you should do anything about it.

[Telian]

Hi

You don't say how long since diagnosis or how long on 6mg and how fast you got there. Once that's known it will be easier to help and I know others will be along to help too, but 6mg is low for GCA if you're having a flare, do you have any other symptoms, headache, jaw ache when eating? so many unanswered questions - did he order blood tests? If you are having any of those symptoms I would up to the last dose you were comfortable on in the first instance and if they relieve those symptoms then you know it's a flare. Sounds like you need to go back to see your usual GP to get those bloods done. You can't mess about with GCA. Do you have a Rheumatologist?

If you've got shingles (twice) it's a sign your body is in stress, which will go in time without treatment as the stress reduces, just pain killers and a soothing cream if you're in pain with them, but speak to a pharmacist re that. This could be a side effect of your AI if you are not on the correct dose of Pred, it affects us all differently.

Best Wishes

[Primarose in reply to Telian]

Hi Telian

I started on 60mgs of pred in January 2017 and following the letter from Rheumatology I reduced by 5mgs every two weeks. I did this until I had my first flare last August and then reduced a lot more slowly to suit me not the hospital.

I've come to realise that with this disease, one size does not fit all.

The only symptoms I had were extreme head pain and shoulder and neck pain, which came on on Saturday.

I told the doctor and he said to carry on with 6mgs per day.

I'm booked in for bloods tomorrow.

It all seems a bit hit and miss!!

[Telian in reply to Primarose]

Bloods don't always tell the true story, it's symptoms that count - if you continue to be in pain then try increasing your pred if it alleviates the symptoms you'll know what it is but I would speak to your doctor first. I had shingles following my hysterectomy, a long time ago now, but wasn't offered anti viral medication as I'd had them a while before I showed them my GP, he said they were in the wrong place for shingles, all over my back, but they said they were shingle spots! Follow it up with your doctor. ATB

[PMRpro Ambassador]

Your doctor should offer antiviral medication if you see him within the first 48 hours or so when it should reduce the severity and duration of the attack. After that it probably doesn't help much.

The warning about avoiding others with CP or shingles is aimed at people who have never had CP as a child. If you had it you should have some immunity. You can't catch shingles - it is a reawakening of CP virus which has been dormant in the nerve endings so you must have had CP earlier. Theoretically you can catch CP from someone with shingles - but since you have to be in direct contact with the fluid in the blisters it is pretty unlikely.

A higher dose of pred would probably help with the shingles pain.

[Primarose in reply to PMRpro]

Thanks PMRpro

The doctor wasn't sure whether is was Shingles or an allergy. I feel Ok at the moment, but I will up the preds if it gets worse.

[DorsetLady PMRGCAuk volunteer]

Hi,

If doctor thought it might be shingles then he should have offered you an anti viral injection which supposedly allieviates some of the effects. Not sure whether that only works before rash appears, but suggest you check with GP.

[Primarose in reply to DorsetLady]

Hi DorsetLady

I remember taking antiviral tabs when I had Shingles a few years ago and they did help.

I have to go up to the surgery again tomorrow so I might just ask for a second opinion.