Shingles and MTX: I'm due to go visit family but... - NRAS

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Shingles and MTX

Gottarelax profile image
18 Replies

I'm due to go visit family but brother-in-law has shingles. Normally I wouldn't worry as I have had chicken pox but the NHS in advice on taking MTX says to contact the doctor if you've been exposed to shingles (which suggests we should avoid contact with shingles patients). Has anyone been advised to avoid contact with shingles even if you've had chicken pox in the past?

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Gottarelax profile image
Gottarelax
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18 Replies
bevlin profile image
bevlin

Haven’t been advised personally but my brother who has RA and prostate cancer has recently had shingles. He had it so bad, and on his head and face, that for a while The A and E doctors weren’t sure what he actually had! He said it felt like a knife plunging into his head repeatedly. Face was grotesquely swollen. It was by luck that a doctor who popped into A and E recognised the symptoms. He was given morphine for the pain and put on strong antibiotics and antiviral meds. He was also advised to avoid any stress as shingles flares up when stressed or tired/ rundown. Obviously his immune system is non existent at the moment because of the RA and cancer.

Having chicken pox as a youngster dosent protect you from Shingles either. I never realised how nasty shingles could be. This photo was taken when it had started to heal!

Facial shingles. I thought he’d been in a car accident when he sent me this photo!
bpeal1 profile image
bpeal1 in reply tobevlin

You can’t catch shingles from shingles, you can only catch chickenpox from shingles (and having chickenpox before should protect you from that).

Shingles is caused by the dormant chickenpox virus (left behind after a chickenpox infection) is ‘woken up’. There are lots of things which can trigger this including stress, or being run down.

nhs.uk/conditions/shingles/

bpeal1 profile image
bpeal1

You can’t catch shingles, however you can catch chickenpox from someone with shingles if you’ve not had it.

The advice I was given when my son had chickenpox was that as long as I was sure I had had chickenpox the risk to me was extremely low but just to be vigilant.

Unlike chickenpox the virus from shingles isn’t transmitted in the air. The virus is only spread by direct contact with the rash or fluid from the blisters. ncbi.nlm.nih.gov/pmc/articl....

I am not medically trained but only sharing the advice I was given, please contact your own rheumatology team too.

AgedCrone profile image
AgedCrone in reply tobpeal1

Well I must be the exception to the rule as I had Shingles in my head/face & I definitely had NO CONTACT with the rash or body fluids of anybody with it.I live alone & none of my neighbours had it.

I was very lucky & only had it mildly…..but the pins & needles nerve headaches lasted for months afterwards.

I’m not a scaredy cat about catching anything……but I would not knowingly be in close proximity to somebody with the virus.

I had had chickenpox as a child.

bpeal1 profile image
bpeal1 in reply toAgedCrone

I think you’ve misunderstood. You can’t catch shingles. Shingles is caused by the dormant chickenpox virus (left behind in your body from a previous chickenpox infection) being woken up. Many things can trigger it including stress and being run down.

nhs.uk/conditions/shingles/

You can only catch chickenpox (not shingles) from coming into contact with the shingles rash but this is extremely unlikely if you’ve already had chickenpox, even if you’re immunesuppressed.

AgedCrone profile image
AgedCrone in reply tobpeal1

No I didn’t misunderstand…..Below …is what it says on the website you posted above

“Shingles (zoster) looks like chickenpox and is caused by the same virus. However, it usually appears on only one part of the body. Shingles occurs in people who have already had chickenpox, usually many years later.”

I was remarking on this below…. I was meaning my shingles came out of the blue…..as I think most people’s does.

On that website it says……..

“Shingles is very contagious. You can catch chickenpox from someone with shingles through contact with their secretions or their skin rash. You CANNOT get shingles from someone with chickenpox”

Now who in their right mind would deliberately actually make contact with “secretions or any sort of skin rash “ & chance getting get anything?

If there was definite proof of how most people get Shingles we would all be able to avoid it wouldn’t we?

happytulip profile image
happytulip in reply tobpeal1

Sorry, but after 15:years as an ED nurse and someone who has worked in a regional Infectious Diseases unit I would disagree.

Nice guidelines state that anyone who is immune compromised should avoid anyone with the Zoster virus (chickenpox/shingles).

And in my experience I have seen people develop shingles and I've seen people develop chicken pox after exposure to others with the virus. The patient who I saw were pretty unwell and needed admission for IV antivirals and IV antibiotics.

If it were me I would stay away.

Sheila_G profile image
Sheila_G

You can only get shingles if you have had chicken pox so keep away.

bpeal1 profile image
bpeal1 in reply toSheila_G

You can’t catch shingles from shingles, you can only catch chickenpox from shingles (and having chickenpox before should protect you from that).

Shingles is caused by the dormant chickenpox virus (left behind after a chickenpox infection) is ‘woken up’. There are lots of things which can trigger this including stress, or being run down.

nhs.uk/conditions/shingles/

NHS website
PloddingOn1 profile image
PloddingOn1

Hi, I have RA, I’m on biologics and been advised to avoid shingles and if I come into contact with anyone who has shingles to contact my GP. I would ask advice from your RA nurse.

Magz168 profile image
Magz168

Only yesterday I went for my shingles vaccination and they pointed out that I wasn’t to have the live vaccine as I am on methotrexate I must have my vaccination in two parts had part one yesterday and 2nd in 8 weeks time kind regards xx

happytulip profile image
happytulip

NICE Guidelines state that if you have shingles you must not go near immune suppressed/ immune compromised patients.

I know this because half of my family have RA and are immune compromised and someone with shingles turned up to my father's funeral. We had to seek GP advice pretty urgently.

If you are on MTX you should avoid anyone with shingles, whether the shingles are wet or dry.

When I worked as a nurse we had to isolate the patients for this very reason.

Gottarelax profile image
Gottarelax

Thank you all for your replies. I think that my post was maybe misunderstood and there is a lot of misunderstanding around chicken pox and shingles. I'm a virologist so understand the difference between the two illnesses.

Both chicken pox (varicella) and shingles (zoster) are caused by the varicella zoster virus. Most children catch chicken pox, have a nasty rash and recover but the virus lies dormant in nerve cells. In certain people (usually in response to stress) the virus activates, travels back down the nerve to the skin and causes shingles. Shingles presents with pox only in the region that is close to the nerve endings and therefore is usually on one side of the body or head. Because it's in the nerve, it's extremely painful.

In both chicken pox and shingles, you get pox which, when open sores, are highly infectious. Whether exposed to chicken pox or shingles, a person who has no immunity to the virus can contract chicken pox. The risk is likely higher with chicken pox as usually there are a lot more pox all over the body compared with a confined region on a shingles sufferer. However, you can catch chicken pox from a shingles patient. If you've had chicken pox you should have very good immunity and not catch chicken pox from either a chicken pox or shingles patient; although, if you had it very mildly as a child there is chance you can get it again.

So my question is that if you have immune suppression such as when taking MTX, are you a lot more prone to catching chicken pox for a second time (or is the given advice based on the fact that the reader may have never had chicken pox so just to be safe).

happytulip profile image
happytulip in reply toGottarelax

As I said before, NICE guidelines state that people with shingles should avoid contact with people who are immune compromised or immune suppressed.

So if a relative has shingles and you are on a DMARD such as MTX, the guidelines are advising you to stay apart, that's as I read it.

In fact when I was on MTX I avoided viruses at all costs. Any virus would make me extremely unwell.

There have been a number of people who have said that they have been advised by their doctors to avoid exposure to chicken pox and shingles. I believe this to be sound advice but ultimately it's your decision.

Best of luck.

Gottarelax profile image
Gottarelax in reply tohappytulip

I’m going to avoid exposure as I just don’t think it’s worth the risk.

happytulip profile image
happytulip in reply toGottarelax

I agree. And chicken pox in adults is no joke.

Poshcards profile image
Poshcards

I was told to stay away but my dear blind and disabled mum at 88 had really bad shingles on her face, in her mouth and ears and I had to care for her for two weeks day and night, I did not catch it! x

Gottarelax profile image
Gottarelax in reply toPoshcards

That sounds awful. So glad you were able to care for your mum. Sometimes we have no choice but to take risks. In this case though, I can avoid it without it being difficult. It's surprising also how sometimes you can have huge exposure but not get infection and other times you don't even know how you could have caught something but there you are.

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