Lupus and shingles

[Bronn]

Hi all, wow! It's been a while. Have any of you with lupus suffered with shingles? If so did it follow the norm for the rash blistering?

My rash 1st came up 2 1/2 weeks ago. 2 parts blistered only. Pain is unbearable 😣 Help please 😢

[Sarah74]

I’ve had shingles and unfortunately it’s horrible. I couldn’t be prescribed anti viral drugs so just had to suffer. For some reason if I lay flat on my back the pain relieved.

The recovery after is quite a while after if I remember. Take it easy

[Kazunlocked]

Can't really help you. I had it around 15th Dec 2018 laft side of trunk wrapped from breast bone to spine. Yes it was very unpleasant, quite nasty. However I was very fortunate that I didn't have on going nerve pain as many do. Best wishes to you & a swift recovery. xx

[Spara01]

I had shingles with SLE a couple of years ago and I didn't know it until about halfway through its course! The first thing I noticed was that I had a numb right thigh and buttock. Then I developed blisters around my waist. At no time did I have any significant pain, I just felt under the weather which I assumed was the Lupus.

It was only the appearance of the blisters that prompted me to visit the doctor. I was too late, by that time, for anti-virals to be of use and so the virus just run its course with my 'numb bum' gradually coming back to life!

[overnighthearingloss]

I haven't got any tips of my own but there are some here that might be of use

greenmedinfo.health/disease...

[dotty2203]

I get Shingles a lot! I also have Post Herpetic Pain from one of the first times I had it. I now take a low dose of Acciclovir as a prophylactic but I had it again a couple of weeks ago. The only thing that really helps when you get it is rest. I still don’t really spot the oncoming symptoms as they can be similar to a flare

[Krazykat26]

Hi Bronn 💐

Sorry to hear that u have shingles!! Unfortunately you will be unable to have antiviral meds because u have to catch it early..within 72 hours of the blisters appearing.

I have had shingles twice..the first time in 2009 n the second attack whappened in July n August of this year. I didn't have lupus back in 2009 n I didn't have any treatment..but this year I had antiviral medication n I have SCLE. This second time I will say that the antivirals helped with the symptoms..although it's still extremely painful!!

The only things I can suggest is trying to make yourself as comfy as possible..I used calamine lotion on the blistering..or u could make a paste of sodium bicarbonate n a little water n apply that where needed. I took piriton for the itching..n u might want to get strong painkillers..I'm prescribed tramadol so I took that whilst it was really bad. I had it around my left side from middle of breast to middle of my back n all down my left arm..I couldn't bear anyone near me n wearing any clothing was out of the question so I put a silky pillowcase on n just had to rest my arm on that.

Fortunately (although not really)two other members on here got it at the same time n we all linked up n held each others hands through the whole ordeal...which helped enormously!! 🤝🤝🤝

Gentle cyber hug for u 🤗🤗 I really do know what you're going through (my last attack is still very fresh in my memory) so if u have any questions ask n I will try to help!!

Kat xx

[Dessi72]

Hi Bronn. I am still recovering from Shingles and the pain was unbearable keeping me awake at night and painful during the day. I thought I had an insect bite but the pain increased so went to see a GP who diagnosed Shingles; I couldn’t have been more surprised! I had one spot with a long red patch and then one small red spot that appeared week later. Nothing else apart from itch under the skin beneath my chest. I assumed I had the spots under the skin only, having read about Shingles. The diabolical pain was under my ribs in the right side. I felt very ill two weeks prior and extremely fatigued. I was prescribed a week of tablets which I had to take 1 x 4 daily and told to rest.

Started to feel less tired now but become exhausted by mid afternoon. The pain could carry on for a long time. 😫

Hope you recover soon and the above is of help,

[KatieRL]

I’m an SLE patient and caught shingles a couple of months following my kidney tx. I hope you have been given an antiviral, however I was diagnosed too late for them to do much good.

There is every chance the pain will improve as you have only had it for a couple of weeks.

The pain is the worst I’ve ever known, so I understand just how you feel. Your Lupus doctors should be able to prescribe something to help the pain such as pregabalin. Please don’t take anything unless you have their OK as it could be something which interacts with your existing meds or it could be something best avoided.

Although I was unlucky and my pain has not gone away, there is every chance that it will. Meanwhile try Headspace, a great app which includes packs on Pain, Stress, Anxiety etc.

xxxxx

[chrisj]

Hi Bronn. I've had shingles and it was very, very painful like little needles stinging. I had a large blister rash under my right breast, lots of little blisters all huddled together....ugh

Saw my gp who recognised it straight away and prescribed a cream. She wouldnt give me any pills or drugs because my kidneys were damaged from an e coli infection that landed me in hospital, they never quite recovered so drugs for shingles was out. It took a while to get better but it did and so will yours. Did you see your doctor??

[TomWillingham]

I had shingles about 3 years before I was diagnosed with lupus, APS and an MGUS. It’s so very painful! Absolutely unbearable. Even a slight breeze blowing across your skin hurts. I, too, thought the never-ending pair would never stop. It does, and I hope your relief comes soon.

Be well,

Tom

[Cas70]

Dear Bron - I have had shingles on and off for 40 years ! Which is what led to my Lupus diagnosis. You have my sympathy. I can take Aciclovir. I was put on it daily and then I lowered the dose to every other day as a prophylactic. In the meantime take painkillers. I put Manuka honey on the sore area held on with a large dressing (there are gauze squares you can get) It hurts a bit more at first , then blessed relief , and it heals quicker. Don’t wear heavy clothes around the area or sit on the area ! Rest. In future the minute you feel it coming on, take Aciclovir. It will pass if you rest and take Manuka too, it is a good natural antibiotic (I put mine on toast) . I have a shelf full of natural things that help as I have SLE, Discoid Lupus and Sjogren’s- I wish you better. X

[Elle-26]

I've had shingles twice now this year. I've still got the rash. I also broke out in cold sores which turned into a viral infection on one side of my face. Inflammation affected my eye too. Seems I'm getting a lot of viral infections this year. Not long got over flu. I was offered the viral tablets but told it wouldn't make a difference as it was too late. I ended up suffering.. Little a Dr can do when it's viral. It's taken its toll on me and I'm sleeping a lot as I'm so tired.. I just treat the symptoms.. I use a cream to stop the shingles itch.. and painkillers plus rest up as much as you can xxx Get well soon x

[hopegalore20]

Hi Bronn, hope the issues with the Shingles are beginning to ease off, or you have been prescribed the right medication to help ease the itch/heat.

I have Dermatomyositis. I can very clearly recall having Shingles in January 2016. It was horrendous torture. Was prescribed Tramadol to cope with the pain and Calamine Lotion to deaden the itch. I had severe nerve spams down my left hand side. To this, day I still suffer from nerve damage down my left leg and in my face.

I do hope that you are coping well and making a speedy recovery. Take Care x

[NanaFifi]

I’m currently two and a half weeks post op from having arthroscopic surgery on my right shoulder, removing diseased muscle tissue (RA) and a repair to rotator cuff tear. As if that wasn’t enough, 4 days after the surgery I developed shingles on my lower right back, 4 days after that I developed a rash all over my body that itched like mad!!

I have Lupus and RA and was lucky enough to recognise the shingles quickly so only had 4 lesions and was able to take the anti-viral meds. Pain didn’t linger with me, I dare say it helped that I was already taking Nortriptyline for nerve pain. Good luck!

[Littlemisssunshine87]

Strange thing for me was I had shingles during uni exams and then my health continued to deteriorate over a period of 18 months and that’s when all this journey started.

[panda2]

Dear dear Bronn.. I am so so so sorry you've got this. And as you can tell, so are a LOT of others! Wow. This is even more common than I imagined. I was one who got it at the same time as Krazykat26 and boy did it make a difference to have 3 of us together sharing the experience. Please say what's happening if you're struggling. There's a lot of experience here ready to help.

I got mine in a most intimate place. 🙈 Couldn't wear knickers for a month! The nerve pains were excruciating. And they would go to other parts of my body too. I had a completely numb lower shin as well. It's all bonkers and hard to figure out.

Gentle hugs -- nowhere near your shingles site.

Panda x

[Tile]

I'm getting the feeling that's it's the immunosuppressive meds that makes the virus appear from its latent state. That's so sad.

[NeuronerdDoaty]

Most likely it’s not going to follow the norm for a shingles rash. More often than not it can cover the entire body or it can come back more often or it’s not the same shape as a normal shingles rash. Sometimes people with lupus or auto immune diseases get The virus without the rash. Just be very good to yourself and stay out of the sun. Stay hydrated and rested.

[nanleighh]

I had shingles with SLE. I went to the ER as soon as I saw the blisters. They gave me antivirals and tapering dose of steroids and it never got bad I didn’t have any pain. I hope yours resolve soon without any complications. Nan