Shingles vaccination and CLL

I was diagnosed with Chronic lymphocytic leukaemia (CLL) back in 2016 and was told I should not have a live shingles vaccination. My partner asked if it would be alright if he had one or would that put me at risk, as it is a live vaccine. We were advised at the time to avoid the shingles vaccine altogether.
As I am now approaching 70 and my partner is already 70 it is likely we are going to be offered the shingles vaccine. I have spoken to my Macmillan nurse who says there is now a non live vaccination for shingles called Shingrix, that I could have. But there seems to be no information about whether my partner should still have the live vaccine while I have the non live version. I wonder if anyone has had a similar dilemma and had sound advice?

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Hi @Spimula I have Chronic lymphocytic leukaemia (CLL) and I am 72 yrs old and I had the non live Shingrix vaccine in Nov and then the second one 2 mths later in the Jan.
I was the first one in the surgery to have it so I was used as a nurse training session.
It had to be especially ordered in.
There are 2 phials that have to be mixed together before injecting.
Then a 2nd vaccine dose is given 2 mths later.
My husband was called to his surgery for the live vaccine. When the nurse heard that I had blood cancer he was sent home with a message asking if I was immune supressed or immune compromised.
I have always been on watch and wait so I responded that I was immune compromised.
Therefore he was given the vaccine but told to sleep in another bedroom and avoid close contact with me and use different cloths, towels etc and preferably different bathrooms, crockery etc for a week, not very practical living in a flat. (we were both in Covid isolation at the time).
We just took reasonable precautions.
Neither of us had side effects.
But this is just my personal experience.
Please let us know how you get on and take care

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@Erica. Thank you for your reply and the details of your experience. I really appreciate that. I think then I need to find out if I am considered suppressed or compromised? I have had 5 Covid vaccinations so I presumed I was considered extremely vulnerable but that’s just an assumption! I will pursue this further. Thank you

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Hi @Spimula, good question! don’t be afraid to go back to your Macmillan nurse and your GP to ask this, question. It’s really important you and your partner get the right information for your individual circumstances, so it’s good to hear you’re going to pursue it further. Thank you @Erica for sharing your experience!

We have a bit of general info on this on our webpage here which says
*If you are getting any vaccination, always mention your diagnosis and that you’re not allowed a live vaccine. *

People you’re in close contact with should still get all of their vaccinations, including live vaccines. If you are in close contact with someone who’s recently had a live rotavirus vaccine, then regular hand washing and maintaining good hygiene, particularly during close contact, food preparation, or nappy changing if a baby has been vaccinated, should minimize any small risk.
If someone you know has the shingles vaccine and develops a rash afterwards, avoid contact with the rash.

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Thank you. Yes we will pursue this further. We thought we should both go together to see our doctor to discuss this. I can see no reason why I can’t have this Shingrix slightly before I’m 70 but we shall see. We could certainly make sure we keep things separate for a while, as @Erica was advised. We’ve had good practice with hygiene etc since Covid. :slightly_smiling_face:

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Shingles is similar to Chicken Pox I believe and that if you have had Chicken Pox as a child you shouldn’t get Shingles but occasionally the virus reactivates.These two pox’s shouldn’t be mixed up with Monkey Pox as that’s related to Small Pox and Cow Pox and I have read that most people over 50 will have been inoculated against Small Pox which means the have an 85 percent effective protection against Monkey and Cow Pox too.Shingles, Chicken and Horse Pox are from a slightly different group so the vaccines against the other won’t work.Obviously Small Pox has been a formidable killer of people but is extinct now apart from two small,no pun intended!, samples for study kept in Moscow and Atlanta but I don’t know how dangerous these other Pox’s are although I think that I had Chicken Pox as a child although it may have been Measles or German Measles… maybe all three… hopefully separately!

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Hi @Kevan7 according to the NHS website:-
"You cannot get shingles from someone with shingles or chickenpox.

But you can get chickenpox from someone with shingles if you have not had chickenpox before.

When people get chickenpox, the virus remains in the body. It can be reactivated later and cause shingles if someone’s immune system is lowered."
So that is why shingles is bad news for those of us with dodgy immune responses. Keep well!

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Hi there
I had the Shingrix vac last year at a private clinic, cost me ÂŁ450! Two jabs. I was told I could not get this privately. This vaccine was only available then from the US. Check whether it has now got Brit approval for the NHS.
Had no side effects and would highly rec after seeing a friend with shingles. Hope you can get it free, wrong that people like us have to pay for this. Good luck! Patxx

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@patmroberts thank you. That’s an eye watering amount! But thank you for sharing and recommending. According to my Macmillan nurse it was approved for use here in September last year. So it should now be available to us all who are eligible.

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Just to add to the conversation; I am also on long term watch and wait with Chronic lymphocytic leukaemia (CLL) and had to slightly push my GP surgery to get the Shingrix vaccine in when I was over 70 and I’d read that it had been approved by NICE. But they did get it in and as others have said had to have 2 doses a couple of months apart. I reacted badly to the first dose (2 days in bed) but virtually no reaction to the second. When my wife had her live Shingles vaccine one year afterwards nobody (at the same surgery) enquired about a vulnerable partner. We never thought of the hygiene precautions but nothing untoward happened!
But I suppose by then my immune system had been strengthened. (What with all those Covid jabs my arm is a bit like a pincushion!)

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I now have an answer! My surgery has Shingrix in stock, and once I am 70 ( November) I can ask for it. My partner can have his live vaccine about the same time and no special arrangements are necessary, said the practice nurse, apart from avoiding skin to skin contact at the site of his live vaccine or if he develops a rash. We will be careful and hopefully all will go well!:slightly_smiling_face:

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Wow, you have a plan, good on you, @Spimula great news, let us know how it goes in November.
Look after yourselves

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Whoops meant to say I couldn’t get alt shingles jab on nhs so had to pay for it!

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Glad it now seems to be available on nhs!

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Just to say that I had the Shingrix vaccinations earlier in the year on the NHS and I am not yet 70. My consultant approved it and my GP agreed.

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Thank you for taking time to tell us about your Shingrix vaccination. I had my first one December 16th. The policy of my surgery or Health Trust was you had to be over 70. I had the usual sore arm, no surprise there, and felt weary the next day, but otherwise all fine. I will book my second one sometime in February. My partner in the meantime had his live vaccine and we were told not to make arm contact where he’d been vaccinated. Not exactly difficult to do! But we also used separate towels for the first few days just to be sure.

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After advice from my consultant and having had the Shingrix vaccine course I stopped taking Aciclovir. Although Aciclovir protects against other things too the main reasoning for taking it was shingles protection. This could be interesting for anyone else taking routine Aciclovir. Do talk to your consultant before changing any medicines.

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I was prescribed Shringrix by my haemotologist. My haemotologist advised me to shop around to a number of pharmacies to get the best price. The most expensive was $AUD 360 and the cheapest was $AUD 265.
I was also advised by my haemotologist no sexual or deep throat kissing for two weeks. Given I am 74, that was not a major issue.

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Hi @JohnCP I was advised not to avoid my husband for a week, but the nurse did not say anything about no sexual or deep throat kissing for two weeks, I am 73 yrs old, I shall say no more!!!

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In addition to having Shringrix, o the advice of my haemotologist, I have also had to have all my childhood vaccinations again

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