I think I might have shingles: Hi everyone I... - LUPUS UK

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I think I might have shingles

Krazykat26
Krazykat26

Hi everyone

I suspect that I may have shingles..I have SCLE n I had shingles in 2009 which I didn't get any treatment for..I hadn't been diagnosed with lupus then..so foolishly just let it take its course!!

Now however I'm on pred 10mgs per day n ciclosporine (immunosuppressant)..it says on the little steroid card that if shingles is suspected to seek medical help immediately so I've booked an emergency appt this evening.

I'm wondering if anyone else with lupus has had shingles n what medication is usually prescribed..and any other tips or advice would be welcome

Thank you xx

33 Replies
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You need antiviral medication - acyclovir is commonly used. When it is given in the first 48 hours it should reduce the severity and the duration of the aattack. With some immunosuppressant you would be told to stop taking it for the duration - but that is up to your doctor to decide that.

Krazykat26
Krazykat26 in reply to PMRpro

Ok..thank u xx

Yellow5
Yellow5 in reply to Krazykat26

Glad you’ve made an emergency appointment, the quicker you get treatment for shingles the better. I hope your appointment goes well.

Pip

Krazykat26
Krazykat26 in reply to Yellow5

Thank u..I hope I've been quick enough..but I've been feeling rotten for few days..blistery spots started about 3 days ago..oh well I'll see what happens xx

I have a history of recurrent shingles, I go to get the antiviral before my rash even pops. I always have pain first. Feels like an open rope burn wound that hurts at the slightest touch. Early treatment with in 48 hours makes all the difference. Not to scare you but my last bout of shingles was when I had my stroke. I also flew the day before and had an unknown pfo with ASA so it was a trifecta of reseasons but just be on the look out for clot warning signs. In retrospect I had some the night before my stroke that I equated to dehydration.

Hope you heal quickly it is horrible!

Krazykat26
Krazykat26 in reply to Roarah

Thank u Roarah

I've had the pain for a few days but I put that down to an increase in hypertensive med recently

Because I get loads of skin rashes it's taken me a while to notice these were different to my usual!!! But now small blisters have appeared on my left arm n hand..fingers crossed I'm quick enough..or better still that I haven't got it at all!! Xx

Roarah
Roarah in reply to Krazykat26

If it is too late for an antiviral, however there are a few studies saying even 72 hours might still be beneficial, prednisone was given to me for the pain but at tapering short term dose. I took way to much Advil with the last bout which is actually linked to stroke so be careful with treating the pain with over the counter drugs ask for help if it is needed. Hope it is a quick bout of whatever it might be. The new 2 part vaccine is much better than the previous one and not a live virus. It is worth getting if it becomes available, it had a shortage this year :(

Krazykat26
Krazykat26 in reply to Roarah

Thank u..I'm taking paracetamol which isn't touching it..but I'm prescribed tramadol so I'm using them when needed.

I've got calamine lotion so hubby will be plastering me in that in due course!!

Is there anything else that will help..can u give me any tips on how u cope?

It's been confirmed..shingles..n I've started on antiviral..u know the one but I can't spell it at the moment..it takes me a while to learn how to spell these meds!! I'm on 10mgs pred currently n I'll give my dermy a ring tomorrow n see what he advises..thanx again xx

Roarah
Roarah in reply to Krazykat26

Are you allowed a topical cortisone cream for the itch? If not oatmeal baths help a bit. For me, mine was on my right side always, wrapping it with a ace bandage helped the pain. Mine would hurt so much if my shirt blew and rubbed the area and when it was wrapped the constant pressure seemed to prevent the allodynia.

Hope you find some relief xo.

Krazykat26
Krazykat26 in reply to Roarah

I have betnovate n dermovate ointment for SCLE..am going to ring dermy tomorrow to get his advice..when I flare he usually increases pred to 20mgs for two weeks n then reduce every two weeks..but unfortunately I'm stuck at 10mgs daily..he might suggest an increase?

Oh I know about clothes being painful...all the memories of my previous shingles experience 10yrs ago r coming flooding back!!! ☹️Xx

Roarah
Roarah in reply to Krazykat26

I was on ten days of anti viral last bout and within two weeks the pain from shingles was gone. I had a stroke on the eighth day of treatment and was still in misery from them. The ICU doctors had me to finish the whole dose and before I was released from the hospital my shingles were better so I think with quick meds the coarse will be shortened quite a bit. My first bout 15 years ago lasted months even after the rash. Good luck!

Krazykat26
Krazykat26 in reply to Roarah

Oh well that's something.. getting the antiviral will hopefully help..last time I had it I didn't seek any medical treatment..it lasted for about 4 weeks n I had pain down my left arm for months n months!! Thank u again..I'm so glad that we've got this wonderful forum!! Xx

Krazykat26
Krazykat26 in reply to Roarah

Sorry Roarah I don't know what alydonia is?

I'm the opposite to u..mines on left side..same as it was 10 years ago..so do u tend to get it in the same place? Xx

Roarah
Roarah in reply to Krazykat26

I spelt it wrong I corrected right after but it was suppose to say allodynia, which is an odd sensation or pain caused by nerves and touch. All three times I got it in the same spot I think this is often the case. :(

Krazykat26
Krazykat26 in reply to Roarah

Oh yeah ok I get it..I'm already getting the nerve stuff!! Thanks for all your advice xx

We had two of our members with Lupus have shingles and usually it was after an extremely stressful time in their life when they were taking care of another family member.

They were put on the proper shingles medication and it took 4 to 6 weeks before they were better.

Please contact your rheumatologist and your GP to make them both aware and I assume that the “general practitioner” GP will put you on the proper medication, but the rheumatologist needs to know that you have shingles.

Krazykat26
Krazykat26 in reply to Djlr

Ok thank u

I am seen by dermatologist no rheumatologist as yet..but I will let him know in the morning if it's confirmed by GP this evening xx

harmony2
harmony2 in reply to Krazykat26

Please may I suggest you may want to question if staying on prednisolone/prednisone makes sense. I know it helps reduce overall inflammation therefore you generally feel better but it does actually reduce your immune system’s ability to fight off anything which comes along. Just a gentle suggestion to please query this with your doctors. If you do need to get off it asked for 1 mg tablets so you can do so VERY gradually; asked for a titration plan because it should be very gradual or you will feel much worse if you go off it quickly. Harmony2

Krazykat26
Krazykat26 in reply to harmony2

Thank u harmony

I was flaring for most of last year n my dermy always tries to reduce pred as much as possible..but my lupus has been very tricky to manage..dermy put me on immunosuppressant ciclosporine last August n I have tried to taper down again n again with the same result..my skin just goes barmy..everywhere..except my face..funnily enough!! I'm going to ring dermy today to let him know n to get his advice. Xx

harmony2
harmony2 in reply to Krazykat26

Sounds wise. It’s all so complicated.

I feel like one of the challenges with these autoimmune diseases and chronic illnesses is the constant decision-making in situations when you feel like neither choice (or none of the choices) are terribly good but you have to pick one with the cons along with the pros. It’s another form of demand (mental) in the midst of the other challenges.

May your dr’s and you have the blessing of wisdom.

Harmony2

Krazykat26
Krazykat26 in reply to harmony2

Bless ya..thank u 🤗 xx

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Krazykat26
Krazykat26 in reply to Hidden

Thanks Lou

I've just got back from docs n it's been confirmed..shingles!! Got the acylovir n I've just taken the first one ☹️xx

Roarah
Roarah in reply to Krazykat26

Sorry :( I hope you heal quickly do take it easy. Xo

louise-a
louise-a in reply to Krazykat26

Glad you have got the medication. Try and take it easy , keep stress levels down, eat healthy and hope you feel better soon. Lou xx

HiddenThis reply has been deleted
Krazykat26
Krazykat26 in reply to Hidden

Thanks Lou

I've read the leaflet n it did say something about being able to put it in water..so will try that.. they're big tablets!!! I do find it tricky swallowing meds..🤮xx

I've been researching B12 deficiency and Pernicious anaemia recently and have only just read somewhere that B12 injections (large ones) can reduce the risk of long term pain with shingles - the sooner given, the better the outcome. Someone else may know more, but might be worth asking GP. Lots of vitamin C too.

Krazykat26
Krazykat26 in reply to bookish

Thank u.. I'll definitely get the vitamin c ..n that's interesting about B12 xx

Dear Krazykat, I am glad you have made an emergency appointment...go to A&E if anything goes amiss. PMRpro is correct, if you have lupus, you need antiviral treatment ASAP. If you have lupus then you are specifically advised to avoid people with chicken pox or shingles so I expect you may be given advice to stay away from others with lupus or on immunosuppressants. I do hope that you weather this well...I will send you my best thoughts...take great care of yourself, Lily

Krazykat26
Krazykat26 in reply to Lily77

Thank u Lily

I'm taking the anti viral medication now n I'm going to ring dermys secretary today to let him know.

When my SCLE is flaring he usually increases my pred to 20mgs so I'm going to ask if that would be appropriate in this case..I take 10mgs daily at the moment anyway. I had shingles 10 yrs ago n I didn't get any meds so I'm hoping that now I've got a loads of meds in place..it might not be as bad!! Positive thinking or just delusional..I'm not sure!! But your book will be beside me n I'll keep dipping in just to keep me sane!! 😜Xx

Oh well done indeed to have been so speedy that you are already on the antivirals and in touch with your rheumy team👏👏👏. In my experience stoical denial does not work at all well with lupus and its complications...so I am sure that you are not delusional about expecting a very different outcome this time. Sending you my very best wishes for rapid containment of your symptoms and recovery. My thoughts will be with you...Lily

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