Lupus and the Shingles

kathyp · Tadpole Joined: 26 Sep 2005 Posts: 26 Location: Michigan

Hi All,

I haven't been here in a while, things have been going pretty well. I've been off the meds I was on for a while now, plaquenil and anaprox, saw my rheumie in Sept., and was told that my lupus was a mild form and that I'm in remission, based on current symptoms and blood work being neg.

Now, I have the shingles. I realize this is probably due to my wacky immune response, and has the potentional to produce a flare.

Has anyone here had the shingles? How long did it last? What was your experience with it?

Thanks,

Kathy

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

Hi, Kathy. As you probably know, shingles is caused by the same virus that causes chicken pox, so if you've never had chickenpox you can't develop shingles. Once a person has had chicken pox, they carry the virus in their system but it is usually dormant - unless stress or immune suppression causes the virus to erupt in a very painful way. People with lupus are more susceptible to shingles because of the disease itself, and also because many of the drugs suppress the immune response. Untreated, the shingles rash can last up to a month. It's important to get treatment for shingles quickly (usually antivirals) because it reduces the risk of developing post-herpetic neuralgia, which can last for months or years after an outbreak of shingles. And anyone who hasn't had chickenpox or the vaccination can get chickenpox from being exposed to someone with shingles, so this might be an issue if you're around infants, young children, or immunosuppressed patients.

kathyp · Tadpole Joined: 26 Sep 2005 Posts: 26 Location: Michigan

Mary, thank you for the information. I already stmbled across much of it in my internet searches.

Unfortunately, my shingles did not present as a text book case, and I did not realize that is what it was until I was past the 3-day leeway for the antivirals. I had a little bit of prickly pain at the site, kind of felt like I had a major pimple erupting under my chin, so I didn't think much of it or even look at until it got really irritating. When I did look, there was a sore on my chin that looked like a canker sore, and the next day I had some blisters too. Then it was the weekend and I had to work and no time to go the the doctor. I never had the intense pain like a lot of people have. I did have flu-like symptoms and headaches that came at the same time the blisters did. I've had some prickly pain, but mostly intense itching.

I'm just wondering if others have had shingles too and what their experiences were/are with it.

Is it an omen of sorts?

Smiles,

Kathy

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

I've seen several other posts about it so I know several people on the forum have had it - so has my middle son. Although he doesn't have lupus, he does have allergies and asthma and takes steroids sometimes, so we assumed that triggered the shingles outbreak. He was miserable from the itching but fortunately didn't develop any complications even though the shingles were very close to his eye. He had to be out of school just like for chickenpox. Benadryl helped the itching a little as did aveeno but an over the counter product called Sarna was most successful in numbing the itch. The worst itching lasted about two weeks, after which the blisters started to ooze and then dry up. I found that brewing very strong tea (just regular tea bags) and soaking cloths in it to use as compresses seemed to help the burning feeling that went along with the itching. The rash healed without leaving scars, thannkfully. Even though he was within the window for antivirals, his pediatrician was concerned there wasn't much data on their use in children, so he didn't recommend them.

If you use the Search feature at the top of the page you should be able to locate the other posts about shingles, and PM any of those people to get their experiences. If the itching is unbearable, you might ask your doctor about doxepin cream, I use it for lupus-related hives and it is great - much better than benadryl.

peach224 · Posted: Thu Dec 07, 2006 7:52 pm Post subject:

I have had Shingles, twice. Both times on the back left side of my neck and going up the back of my head. It started out with sensitivity on the skin that changed to burning, then the blisters. My doctor picked right up on it and started massive doses of Acyclovir (4 times the normal dose). I had about 3 weeks of pain in my head so bad that I couldn't lie on the left side of my head or brush my hair and I had the feeling that I would get a "shock" about every 10 minutes that ran from my shoulder blade to the top of my head. It was very disconcerting and extremely hard to go about daily life. My husband was in Japan at the time and I had a 4 year old and a 6 year old. Also, I gave my kids the chicken pox from it.

I have been told that everybody's experience is different and that sometimes it has to do with what kind of experience you had with chicken pox as a child.
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- Peach

"If you think you can, you can. If you think you can't, you're right". - Mary Kay Ash

gretchen_ga_01 · Not So Newbie Joined: 25 May 2007 Posts: 6 Location: TN

Thats a lie about if you've had chicken pox you can't get shingles cause i had chicken pox bad when i was little (age 4) then when i was 9 i got shingles at a young age! Then by the begining of 6th my lupus symptoms started at a very young age and family doc. had once told me shingles were linked to the lupus. I have 2 very tiny chicken pox scars on my arm and one half dollar sized scar under my right under arm so you can get both.

mnjodette · Posted: Sat May 26, 2007 8:36 am Post subject:

Actually, it works the other way 'round, Gretchen: if you've HAD chicken pox, you CAN get shingles. It's the 'dormant' chicken pox virus still in your system that develops into shingles. (See Marycain's post earlier in this thread.) I'm not sure why it's triggered. I got shingles shortly after beginning a prescription for imuran, a immune system suppressant. Ugly thing, shingles. Painful, itchy and it left scars - a nice reminder of a bad experience.
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"Always laugh when you can. It is cheap medicine." Lord Byron

1roswell · Not So Newbie Joined: 18 Feb 2008 Posts: 5

Hey there,

I've had shingles once or twice a year for 27 years! yes.. 27 years. What do you want to know? I usually get it at the base of my spine, although I've had it on th stomach and a small lesion below my eye. If it is on a place like ur face u really shouldn't go to work or come in contact with alot of people due to the possibility of spreading it thru the drainage you can get and airbourne potential. You will have severe itching some shooting pains, and also sometimes be sick at ur stomach or have pains inside around the area. It can be one spot or numerous spots and the only place it can be on both sides of ur body at once is at the base of ur spin, a line of nerves that run in a horseshoe shape around ur anal crack.

Any specific questions?

Cami · Not So Newbie Joined: 19 Jan 2008 Posts: 8

I had shingles when I was 15 years old. The sores went from the inside of my upper arms, into my arm pits, down my sides and across my chest and breasts. It was painful and I remember missing school for quite awhile. On a side note, I did have chicken pox as a young child.

My doc and I are still attempting to put together my medical history in an effort to diagnose my symptoms. I will write more about this in a seperate post.

Are shingles commonly seen with lupus?