Explainer: how do you get shingles and who sho... - CLL Support

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Explainer: how do you get shingles and who should be vaccinated against it?

AussieNeil profile image
AussieNeilAdministrator
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'Shingles occurs due to a reactivation of the varicella-zoster virus that lies dormant in the skin nerve roots after causing the childhood disease chickenpox (varicella) decades earlier.

Shingles typically shows up as a painful, blistering skin rash in a band of skin supplied by a single nerve (dermatome) on one side of the body. Pain often precedes the rash by a few days; sometimes leading it to be mistaken for other conditions.

The shingles rash is often painful and blistering.

Pain at the site of the shingles rash that persists for months or years is the most common debilitating outcomes of shingles. Known as post-herpetic neuralgia (PHN), this pain can be continuous, shooting, or triggered by a light touch, such as from clothes or a gentle breeze.

There is no cure for PHN, and it is difficult to relieve in more than half of those affected, despite the use of multiple and complex pain medications. Even if shingles is treated early with antiviral and pain medications, PHN can occur.

Another common complication is herpes zoster ophthalmicus, which affects the skin around the eye and can threaten the person’s vision.

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People who have a medical condition or treatment (such as for cancer) that weakens the immune system are at greater risk of developing shingles, irrespective of their age.

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Importantly, because (the shingles vaccine) is a live attenuated vaccine, it should not be used in people with significantly compromised immune systems.

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...vaccine protection against shingles decreases with age: from 64% in people aged 60-69 years, to 41% among 70- to 79-year-olds, and 18% for those aged 80 years and over.' (My emphasis)

Full article by Kristine Macartney, Associate Professor and Research Fellow at the National Centre for Immunisation Research and Surveillance and Sanjay Jayasinghe, PhD candidate, both of Child and Adolescent Health, University of Sydney: theconversation.com/explain...

Important notes:

1) Familiarise yourself with the symptoms of shingles and if you are suspicious you are developing shingles, seek prompt medical assessment so you can start antiviral treatment as soon as possible.

2) Talk to your specialist or GP about having a script on standby for the antiviral; shingles symptoms seem to prefer making their appearance on the weekend, when medical assessment isn't easy to obtain.

3) While we are not supposed to be given the (live) shingles vaccine, sometimes we may be given it just before being diagnosed with CLL, or by a misinformed medico after diagnosis. There's a small risk that the live vaccine may give us chickenpox (which can be a serious illness for us) if we are one of the ~5% that have not previously been infected by the varicella-zoster virus, i.e. not previously had chicken pox. I don't think we can get shingles from the shingles vaccine and the vaccine probably would lessen our risk of shingles, but given the seriousness of a chickenpox illness in an immune compromised individual and the reduced likelihood of it actually providing us with protection (to the already shrinking benefit as we age), CLL specialist advice is to avoid the shingles vaccine as well as other live vaccines.

Neil

Photo: Stokes Bay, Kangaroo Island. The orange in the rocks is caused by lichen. This sandy bay is reached by a narrow path through a headland from a pebble beach - but only at low tide. A large natural rock pool for safe swimming is in the foreground.

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albie58 profile image
albie58

Thanks for the information!

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Great overview... important to note that all the Herpes family can reside in us for life...

Hopefully the new far superior attenuated shingles vaccine will be moving to the FDA for approval considerations this winter... Look for mentions of Shingrix...

With regards to perminant damage, shingles and chemo induced complications from RCHOP are pretty close in severity, now almost 5 years later...

It is my belief that shingles should be an emengercy situation with CLL patients... hours matter.... get on antivirals.

~chris

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to Cllcanada

Update... I just got an email, that Shingrix application has been submitted to the FDA ... yesterday... so the ball begins to roll... Canada and EU a bit later

gsk.com/en-gb/media/press-r...

ygtgo profile image
ygtgo

1) Familiarise yourself with the symptoms of shingles and if you are suspicious you are developing shingles, seek prompt medical assessment so you can start antiviral treatment as soon as possible.

It would be interesting to see what the experiences of the members on this site are, of the immediate treatment that is being used to treat their shingles.

Last year, I felt 'growing pains/bone pain' in my leg, next morning spots had appeared, I headed to the hospital and they gave me acyclovir 200mg ... unfortunately, I have been robbed of my mobility due to post-herpetic neuralgia in the sole of my foot ... I can't stand on the damn thing.

This year, half of my palm felt like I had been badly stung with stinging nettles ... I thought that I could see spots under the skin. I headed to the health center and they agreed that it might be shingles, so they gave me acyclovir but this time it was 800mg ... the hand went back to normal.

So when/if we need antivirals for suspected shingles should we insist on having the stronger dosage ?

ygtgo

PaulaS profile image
PaulaSVolunteer in reply to ygtgo

Hi Ygtgo,

You ask for people's experiences of shingles treatment, and the doses of antivirals used... Last week I told the haematologist at clinic that I have a big fear of shingles, and asked if I could have a prescription for antivirals in case I got symptoms over a weekend. She was hesitant at first, then gave me a prescription for Aciclovir 400 mg - to take 5 daily for 2 days. She said this was full treatment doses (not prophylactic), and if I got symptoms I should get the shingles verified as soon as possible and get another script to continue the antivirals longer (if it was indeed shingles). I was very grateful.

So that's my experience. I hope I don't have to use that prescription but I feel better knowing that I have it. It's because of hearing what's happened to you and Cllcanada Chris and others, that I asked the doctor. I felt there is too much at stake here, to risk getting something that could be avoided.

Wonderful news about the new non-live vaccine that's on its way though. I'll be one of the first to be asking for it - just sorry it wasn't around earlier for folk like you.

Paula

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to PaulaS

We need some caution here.. there are a number of drugs, such as acyclovir, famciclovir, or valacyclovir to treat shingles and they are dosed differently...

For example... Valtrex, valacyclovir, is a prodrug that is converted to Aciclovir in the body, so dosing is different.

Please discuss dosing this with your doctor...

~chris

bigunwill2 profile image
bigunwill2

I have been taking a 400 mg twice a day since I started chemo last Nov. I have had shingles shot 4 years ago. I developed shingles in Feb and was given 1000 mg tablet for 10 days within 48 hrs of diagnosis. My case was very mild I believe from having shot and taking acyclovir every day. I will continue taking at least through DEC.

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