Shingles vaccine: Hi, my wife has recently been... - CLL Support

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Shingles vaccine

peterOJ profile image
23 Replies

Hi, my wife has recently been diagnosed with CLL fortunately at 0 stage at present. I have reached a landmark age (70) triggering an invite for a Shingles vaccination which I am believe is a live vaccine and if I have a reaction this could be a potential danger to someone with a compromised immune system. There is some post on this subject however I'm not sure if it's up to date. Can anyone advise the latest opinions?

Many thanks

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peterOJ
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23 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

You should be fine, if you get a rash, keep it covered, but thats unlikely from the vaccine...

I would avoid intimate contact for a few days, and don't share faceclothes, towels etc...

Zoster is transferred from the 'blister fluid', it requires contact.

You should be fine... but check with your wife's CLL specialist. GPs are unlikely to know much about this... from my experience

~chris

peterOJ profile image
peterOJ in reply toCllcanada

Thanks for your reply i will contact my wife's specialist.

KHuff profile image
KHuff in reply toCllcanada

This is not what my CLL doctor told me.

kavidacat profile image
kavidacat

Avoid shingles and the live vaccine!

peterOJ profile image
peterOJ

Thanks for your reply

beanlake14 profile image
beanlake14

She is the one who should not get a live vaccine. I am not sure about you. In fact, getting the shingles vaccine is how my CLL was discovered. I had a bad reaction to it. I agree with talking to a CLL specialist. I think it would be much worse for her if you actually got shingles, god forbid, someday, than getting the vaccine.

Robo77 profile image
Robo77 in reply tobeanlake14

Hi, I was wondering what your bad reaction was to the shingles vacination? My fathers CLL was also identified after a bad reaction to the vaccine. He has had constant itching all over his skin which after 18months is still ongoing. He has been given creams and tablets but nothing is helping. The GP's are saying the itching is not related to CLL or the shingles vaccine? Its just strange that it all started as soon as he received the injection. Any help, guidance or support would be appreciated.

cllgirl profile image
cllgirl

For what it's worth, my CLL oncologist from MD Anderson said in no uncertain terms that my husband (a healthy 70 years old) should NOT get the shingles vaccine because of the risk to me.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

This whole discussion will be moot in a few months when the new vaccine Shingrix is FDA approved... it WILL BE suitable for CLL patients as well as the 50+ population...

The current vaccine is 52% effective, the new one is 90% effective against zoster reactivations... Build a better mouse trap! 😜

~chris

Justasheet1 profile image
Justasheet1

Chris,

I can't believe I'm excited about a vaccine but I am. 🤡

Jeff

Bubnojay profile image
Bubnojay in reply toJustasheet1

Me too Jeff :)

Bubnojay profile image
Bubnojay

Living in hope here Chris, as I cannot help but wonder how long we will have to wait in the UK for NICE to approve the Shingrix.

Oh how I wish it had been available for you and many of our friends here.

I know a certain Scottish gentleman who will second that, his wife too.

It is one of a few persistant fears I have, as I know how horrible a disease it is. I was unusual in having chicken pox as a child, then getting shingles as a teenager, fortunately with none of the nerve damaging effects that are so debilitating.

Having had shingles once is no insurance against having it much worse in the future, so the new vaccine cannot come soon enough for me.

Thanks for the update, um about that mouse trap...

Hope you are doing ok

Bubnjay1

peterOJ profile image
peterOJ

Thank you all for your comments....... it appears there is no definitive answer as with most things in life it's balancing the risks. At present I'm inclined not to poke a stick in the hornets nest by having the current NICE approved vaccine but will review if things change (never say never!).

Bubnojay profile image
Bubnojay

On no account should one consider the current shingles vaccine, that would be a very bad idea. The current vaccine is a live one that could trigger shingles in the immune compromised, that's us. The new vaccine, when it comes will not be live and as Chris said, should give a level of immunity to 90 % of us. I think I have got that right Chris.

Never underestimate how vile shingles with its lasting painful effects is.

I always remember an elderly gent showing me the result of having shingles nearly two months after it had broken out. His torso was black, blue and yellow still, he said he had never felt pain like it.

Not all would have it that badly, or in the body, however it is imperative one gets antivirals at the very first tingling and pinking if possible.

Hope we who have escaped so far don't find out for ourselves how bad it can be.

I will be there with arm held out as soon as it becomes available.

Best wishes all

Bubnjay1

CLLSA profile image
CLLSACLLSA

Vaccinations in summary.

Any LIVE vaccines should NOT be given to patients with CLL (or other immunocompromised patients).

Live vaccines for close family members of patient with CLL:

- this is a balance between potential benefit for the person having the vaccination versus potential harm to the close relative with CLL

- in your scenario, it is unlikely to be harmful to your wife, but one cannot say there is no risk at all. This has to be an individual decision.

peterOJ profile image
peterOJ

My wife's consultant also advised that there was a very low risk, perhaps because she is at stage 0, not receiving treatment and provided I didn't have any reaction to the vaccine. I have now had the vaccine kept clear 😷 and no reaction 👍

Many thanks for your comments

Wendy328 profile image
Wendy328 in reply topeterOJ

Very scary I went to my GP last Thursday he recommended a Shingles vaccine. Because I have been reading like a maniac since being diagnosed 4 weeks ago I told him CLL patients should not have live vaccines.

peterOJ profile image
peterOJ

Some GPs are more aware of CLL than others, my wife's GP has a number of patients that have been W&W for some time so he knows the issues however you cannot be certain that the rest of the team are so diligent. The Internet and this forum (and other forums) are a good source for checking areas of concern - be careful out there.

All the best

manzelka profile image
manzelka

My husbands Haematologist advised me not to have the shingles vaccination, as there is a risk to my husband if I were to have this.

peterOJ profile image
peterOJ

My wife's Haematologists advised that the risk of me passing shingles to my wife (CLL patient) from my possible reaction to the shingles vaccine was minimal. This may also be because she is not receiving treatment and hence her immune system is relatively good.

The risks are:

Your reaction to the vaccine - Unknown but very small chance of adverse reaction. Fortunately I had no ill effects.

Your husbands CLL treatment status - is his immune system ompromised by any treatment.

I hope this helps

Cllcanada profile image
CllcanadaTop Poster CURE Hero

There is a new far more effective shingles vaccine due for FDA approval next month.. and most people including some CLL patients will be able to have it... guidelines aren't available yet...

Its called Shingrix... it is NOT A LIVE VACCINE.

~chris

in reply toCllcanada

This is interesting. Only available in Canada and the USA ?

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to

No... it is currently with the FDA, and approval has been sought from the EMA in Europe, Canada should also be reviewing it. Don't know about the U.K.

From GSK

The candidate shingles vaccine, Shingrix, was submitted for regulatory approval to the FDA in October 2016, to Canadian regulatory authorities and the European Medicines Agency in November 2016, and to Japanese regulatory authorities in April 2017. Shingrix is not currently approved for use anywhere in the world.

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

If all goes well, I feel it will be available early in 2018.

Billion dollar markets tend to drive things at a good clip..🤑🤑🤑

~chris

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