Shingles and lupus

I've been feeling unwell for about a week before I finally went to the docs I started off by having weird stabbing shooting pains in my body then developed a large red raised sore at the front of my scalp that was so painful and very painful to touch . 2 days later the left side of my face became so painful and too painful to touch but worst of all was my eye it was throbbing and hurt to move my eye around. Went docs and by the time he saw me for my appointment I'd developed more raised red lumps on the left side of my face and forehead . He told me I have shingles but needed to go straight to the eye hospital as it could affect my sight. Been really poorly but taking my needs for it 5 times a day along with the ointment prescribed for my eye. Is shingles related to lupus as I was wondering if we are more likely to develop this because if our immune system? And how long is this attack of shingles likely to last. Has anyone else been through this?

12 Replies

  • Hello. I developed shingles in Feb 2014, just 3 months after my lupus diagnosis and to add to my situation I lost my Dad in January 2014. So I was low both physically and mentally. I was too late for anti virals. I posted here about shingles and got some great replies. Look at my posts. We have wonky immune systems, that are at war with our own bodies rather then fighting the things they should be. Plus lupus medication can make us more vulnerable. I had shingles around my left side of my stomach. But even though it was covered by my clothing I wasn't allowed to return to work (in a school) after the half term holiday, in case I was a risk to the children in the school where I worked. So all together I was off work 2 weeks. It made me feel really crappy I have to say but think mine was quite a mild dose. I hope you are feeling better soon.

  • Hi Wendy39 thank you for your response at the mo i feel like one minute im on the mend but right now I'm still in bed as my eye ball and socket really painful and it hurts to look at things and my scalp extremely painful. Not only that I'm extremely tired. I note u were off work for 2 weeks and web i asked my doc if I'm able to go to work (not tht i could with the way i feel) and he said no way i have to wait until it's cleared up only thing is when i told my manager she was like ' why do u need to be off work it's not contagious! ' i was totally shocked i cudnt speak for a couple of seconds. Don't think people realise how painful this is. The pains in my head eye ear face and throat is no joke! Anyway thank you i will read ur replies to ur post. Have a lovely weekend

  • It is contagious! But it is the risk to you that is important.

    Nice to know she cares about her staff though - NOT!!

  • PMRpro exactly!!!

  • A friend of mine has had it on her forehead and found it extremely painful. Are you/can you take pain relief?

  • Yes I'm on pain killers and the antiviral tabs but I've also got my morohine patch on as having a slight flare as well

  • Shingles can only happen when you had chicken pox earlier in life and then the virus goes dormant, hiding in nerve endings in various places in the body. Something wakes it up - and it causes shingles. It isn't known what reawakens the virus so while it COULD be the fact your immune system is not functioning properly but it also happens to perfectly healthy people.

    People on immunosuppressant medications are generally warned to avoid people with CP or shingles but that is because anyone who has never had CP as a child and catches it as an adult can be very ill and it is very unpleasant. Obviously you can catch CP from someone with CP - but theoretically you can catch CP from someone with shingles. It isn't known to happen because the virus is only in the blisters - once they have scabbed the virus is no longer available - so if they are covered it is unlikely to occur. If you had CP as a child the risk is much lower. And you cannot "catch" shingles.

    Nearly forgot - the shingles itself usually lasts 2 to 3 weeks, just like CP, but if the virus damages the nerve endings in which it was dormant, what is called post-herpetic neuralgia can develop and it may last much longer.

    Hope you get better soon.

  • Thank you for your very informative reply it is much appreciated. 😉

  • Wash your cloth in hot water and separate from others. It could cause someone else chicken pox. Be sure to prevent the infection of the rash area it can be itch later when it is healing. I used a lotion called Sarna that contains .5% camphor and .5% methanol. It helps for the pain and itch

  • Thank you for this info i will get wat you have recommended 😳

  • Hi Tre123,

    If you want more information about shingles, the NHS site has a great page at

    People who have a weakened immune system are more prone to flares of shingles. Since many people with lupus are on immunosuppressant medications or have a weakened immune system from the lupus attacking their white blood cells, it may be more prevalent than in people who do not have lupus.

  • Thank you Paul_Howard i will read all the info on this. Many thanks

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