Shingles: Hi has anyone had shingles more than once... - LUPUS UK

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Shingles

ftjftj63 profile image
16 Replies

Hi has anyone had shingles more than once? I had it about four years ago and got med to stop the rash in time but suffered with pain for almost two years. On 5 Dec I started tables Zovirax 800mg X 3 daily because I got shingles rash om my forhead, been stuck in bed the last week with influensa, just wondered if anyone knows if this be due to a Lupus flare IM so tired and have loads to do before Santa comes down the chimney. Hope all you Lupies out there stay strong and have a very Happy and relaxing Xmas xx

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16 Replies
chrisj profile image
chrisj

Hi - I've had shingles for the first time so this is a new one for me. Saw my gp who gave me hydrocortisone cream and I've been using that for the last 8 days. The rash is clearing and the sharp stinging pains that come with it are much better. She wouldnt give me pills as there are side effects on kidneys and mine were damaged after an infection this summer...

How often you're likely to have problems with the virus I've no idea. Its the chicken pox one and if you've had that the virus stays dormant. What wakes it up I dont know, maybe your doctor can tell you

Hope you feel better soon xx

ftjftj63 profile image
ftjftj63 in reply tochrisj

Thankyou so much, I have spoken to my gp he said it was quite common with Lupus SLE and sjogren to have shingles several times. Stress is the problem so after taking his advice I am taking it easy and feel much better already. I have a wonderfull caring family who understand my illness. I hope you keep well and have a lovely time at Christmas 🎄

chrisj profile image
chrisj in reply toftjftj63

I think its stress that started mine with the infection I had, I ended up in hospital for 10 days. Thank you for telling me what your gp said as I wasnt sure what part lupus had played, I have sjogrens too, and lets hope we dont get the virus waking up again....much love for a happy xmas xxx

Evaj3 profile image
Evaj3

Yes I had shingles twice, my dermatologist stated that you should only get it once. When I was off Methotrexate I got the Shingles vaccine. New studies show that people who get shingles under 45 have a increased chance of cardiovascular disease due to the inflammatory results it sets off. If your able try to get the vaccine.

ftjftj63 profile image
ftjftj63 in reply toEvaj3

Hi Eva ITS my second time too and GP told me it can come at any time because of autoimmune illness. I am 52 years old have had Lupus SLE Sjogren for over a decade. He won't give me vaccine because it can cause more problems than help. He did say however after taking large doses of Prednisolone It might cause shingles to reappear. Hope you are well and all the best, have a lovely Christmas xx

Evaj3 profile image
Evaj3 in reply toftjftj63

It's hard with different opinions. Both my dermatologist and rheumatologist suggested the vaccine. I'm 56 had it one year ago when I was briefly off of methotrexate and had no problems.

Kate-L profile image
Kate-L

I've had shingles once - it followed my kidney transplant back in 2002 and the chronic pain (PHN) has been with me ever since. I dread the thought it could come back and went to see my GP about having the vaccine. He nearly flipped! Told me I shouldn't have it because it was a live vaccine and could possible cause shingles to return. If you think you may have been near anyone with shingles or children with chickenpox, you need to get to your GP right away for antivirals (providing you can take them). The quicker the better! Leave it and you could be stuck with PHN, which is about as unpleasant as it gets.

ftjftj63 profile image
ftjftj63 in reply toKate-L

Thank's Kate I'v been on antivirale since 5th Dec, they do help but AS you say the chronic pain comes and goes. It is the second time I had shingles under my breast four years ago went on same med but suffered with pain for two years I now have on forehead rash has gone now😀 but gets very painfull. My GP did not recommend vaccine because of Lupus SLE told me I just have to be aware of signs/symptomer AS it can reoccur any time. Hope you are well and have a lovely Christmas xx

Kate-L profile image
Kate-L in reply toftjftj63

Thanks so much - hope you have a pain free 2016! xxx

sunshine16 profile image
sunshine16

Yes had it few times hope u are feeling a little brighter 💐💐

MagsaTrini profile image
MagsaTrini

I currently have shingles for the 5th time, very mild but painful enough

I wasn't aware it's common to get it numerous times with lupus

ftjftj63 profile image
ftjftj63 in reply toMagsaTrini

Sorry to hear that. I have now stopped taking Prednisolone my rheumy said it was one of the downsides with Them. I am only taking Plaquanil and Vemovo and Must say feeling much better. Vemovo took a few weeks to work but well worth it. I hope this helps you and you suffer less with shingles. All the very best😉

MagsaTrini profile image
MagsaTrini in reply toftjftj63

Thank you :)

ftjftj63 profile image
ftjftj63 in reply toMagsaTrini

😉Hope you are feeling better and the heat isn't efecting youre shingles 😃 Let me know how you are getting on

MagsaTrini profile image
MagsaTrini

Thank you, both shingles and "lupus" rash are clearing nicely. Saw specialist on Wednesday and although I have 9 of the 11 criteria and she highly suspects lupus, she reviewed my blood results and As they are all clear she is, understandably , hesitant to give me treatment, referred me to a dermatologist and I had a biopsy of one of the "blisters" on Friday, waiting game again for another month. Lupus vs vasculitis??

ftjftj63 profile image
ftjftj63

That's a long wait fingers crossed here for you 😃 Its very hard the waiting for results just hope you can start treatment soon. Have you had the deep skin biopsy? Had mine over 10 years ago and that's how the diagnosed my Lupus SLE with symptoms and a couple of pos bloods waalers etc. Please let me know how you Get on, all the best 😉

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