Does lupus make shingles worse?: I have had... - LUPUS UK


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Does lupus make shingles worse?

madmagz profile image

I have had shingles in the past but have never felt this bad. I have been having an active lupus flare for about two and a half years but just recently everything seemed to be calming down and I was feeling great. So just as I was feeling well enough to start doing a few things I started getting a rash that is different to any of the ones I get due to the lupus and chronic pain that is really debilitating, so bad in fact that I am on Morphine due to allergies to other pain relief. I am trying to make sure I drink plenty of fluids as I have virtually no appetite as I feel very sick. Please help fellow lupies I hope someone has some answers and can let me know how long it lasted if they suffered the way I am suffering right now. Sorry to sound like I am whinging but all was going so well. :-( xxx

13 Replies

Oh bless you, I'm sorry I don't have any answers for you, but sending kind thoughts. A friend of mine had shingles and was so poorly and she is fit and well so I would guess having lupus will only make it more difficult to fight this illness, pretty much like everything else we pick up along the way.

I really hope things settle down for you soon and I should see your GP soon if things get any worse or if there is no improvement.

Take care

Are you taking antivirals for it? Lupus does aggravate it, indeed, but unless you're on CellCept you should be prescribed a course of acyclovir pills to take for a week. Go to your GP for a prescription. All the best.

I think as a rule Lupus make everything worse.

hi madmagz. I have had singles twice once before being on cell cept . sorry to say i felt that i was going to die i had them both times overcomplete right side of head down neck front and back tthey were alsow in eyebrow and around eye I have some scars left and still have pain in scalp . dont like hat on for too long and aways get a dry cut at hair cant have hairdresser washing my hair also feel head to shoulder mascle feels like is pulling at time. was put on antiviral but staid on cellcept . I now have a fear of being in contact with people in general incase i become ill But looking on this site I am not the norm. my remy was away at the time so looking back maybe i should have been told to come of cellcept

Hi thanks very much everybody for all your answers I really appreciate it. Purpletop I did go to my G.P. on Wednesday last week luckily she is fantastic I consider myself very lucky to have such a great doctor who is patient and listens to me, she has been our family doc for ages which helps as she knows me well. She has got me on Aciclovir 800mg five times daily, the rash is on my feet and the inside of my legs right up to the top and the pain is all through my legs and feet and in my abdomen fingers crossed it does not last too long, you poor thing corrie4 that must be awful I can remember when I used to go to the hairdressers for a bit of a pamper (been bald for two and half years now) it was so nice to sit and relax it sounds like more of a torture for you with all that pain.

I generally try to avoid public transport when all the schools are chucking out but the times have been staggered round here as there are some very big schools and the buses were all over crowded I avoid supermarkets when they are full of kids too, I have to wear gloves due to being photosensitive but will never touch a trolley handle with bare hands again after seeing one on telly under an electron microscope - it was enough to put you off your dinner! :-o

Thaddeus thanks it's a good job I have a possitive mental attitude, and plenty of friends and my dear sweet daughter to do some running about - I am holding a fundraising bbq for lupusUK in 2 weeks time and still got things to do for the organising of said event all donations of energy gratefully received. ;-) lol

Thanks again everyone it is great to know I have my fellow lupies on my side

Madmagz x

Klane57 profile image
Klane57 in reply to madmagz

Hi, Madmagz, I'm having a severe flare too. Foot pain and shingles down the back of my leg plus hives on my torso and a myriad of other issues. I HAVE GOOD NEWS! I've found a lot of help from essential oils. I use Young Living 100% therapeutic grade. German chamomile with lavender applied directly on shingles gives immediate relief and is clearing them. Many oils help! Young Living has a blended oil called ImmunoPower that I've been using for only five days and I feel better than I have in months already!!!!

Some of our symptoms are caused from steroids and other meds.

Prayer also helps!

Lots of people have the virus that causes shingles already in their body and look and feel well, but yes, stress of a lupus flare or being immunosuppressed can bring it on, or being it out.

If the shingles leaves you with neuropathic pain there are medications you can take for it. Neuropathic pain is very specific and won't respond to most painkillers.

madmagz profile image
madmagz in reply to Herb

Thanks Herb, I am a bit concerned about the thought of being left with neuropathic pain as I am allergic to many pain killers and can only really take morphine which I don't like taking too often for obvious reasons. I like to try to save that for night time so that I can at least manage to get some sleep and so I might have some energy for the next day if I am lucky. My hips have started to be quite painful, my partner came shopping today it is the first time I have been out for a week and am feeling it now so will be having an early night tonight. Do you know which medications are good for the neuropathic pain as I am allergic to all non-steroidal analgesics I can't take anything that can be bought over the counter everything I have is on prescription. I am very grateful to you for taking the time to respond to my question, thanks

Madmagz x

Better talk to the GP.

Hopefully this will help a bit.

Thank you all for all your kind words and support unfortunately something else added itself to the cocktail of ill health issues and I have just come out of hospital after nearly two weeks. I am however feeling much better for it and am very thankful for the care I had at Kings College in London as although we didn't get to the bottom of the problem we have eased some of the pain. Thanks again everyone and I just thought I'd explain my absence.

Madmagz x

I am taking cellcept and it makes my shingles flare.

Hi sorry to hear you are so bad. Lupus does make us more prone to getting shingles. I am having the same problems now. I don't know how your gp works but you can get an anti viral medication. Acyclovir that can help. Try contacting the nurse practitioners in the rheumy dept. for some advice they will have more of an idea about current treatment options. Sending lots of hugs.x

I've had shingles 3 times in the past year they are talking about keeping me on a low dose veltrex anyone else have this problem

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