Anyone had a shingles vaccination?

[graymare]

It was suggested by several friends who suffer from occasional attacks that I should avail myself of the free shingles vaccinations currently being given by the nurse at my GP's rooms. Because it is a live vaccine I wasn't sure about having it. I have ET, jak2 neg, and am on interferon alpha injections, once per week. Maz or anyone heard advice for or against? Thanks for the info----neither my GP or my haem had heard anything adverse, but one is v young and the other v old so hence the inquiry.

[Twinkly]

It's only my personal view ..don't we get enough poison and chemicals pumped into our bodies ? I don't get flu jabs .or phneumonia jabs ,but I stay well by eating healthy growing fresh recognisable food and drink .my regular intake of garlic and onions is like a natural internal antiseptic ,I was taught by my doctor friends in Russia ..they gave me beetroot soup ( which they swear by ) in the freezing winter ..think about it !! Twinkly xx💜

[Paul42]

Its not recommended for people with blood cancers.

There are signs up in our haematology department advising not to do so.

[francesb]

Hi, my consultant haematologist said definitely not to have any live vaccines and that includes shingles. He was very clear that people with MPNs should not have it. Flu jab ok though. Best wishes, Frances.

[darcey]

Do not have a live vaccine flu jab ok but NOT shingles jab.xx

[Splb3317]

Hi,

Yes, I've had the jab. I've been plagued with herpes all my life -cold sores and herpes ulcers on the cornea, so I jumped at the chance to avoid shingles. My GP said that as long as I am not on chemotherapy of any kind, I would be fine. I think the problem comes if your immune system is suppressed as it can be by some of the drugs . I have PV which is well controlled by Aspirin and venesections at the moment, so I had the jab as soon as it was offered a few months ago. No problems with it and, for me, it feels so good to be protected.

All the best

Sandra

[Borage]

I really don't want to get shingles. Is there an alternative vaccination available?

[SusanFletch]

You shouldn't have any injections of live virus was what my consultant told me. I did have shingles because I started taking Rux before the link was known. I now take aciclovir twice daily as a prophylactic against a repeat. Maz can probably give you the up to date view. Best of luck.

[linds]

I have had the flu jab for several years now. Having had real influenza once in my life I never want to risk it again, especially not now I have MF. However, I was told very clearly not to have shingles as it is a live virus. I tend to follow instructions from my medical team to the letter as they are the ones fighting my corner.

[mol56]

I was told that flu jab okay but shingles

[Mazcd Partner MPNVoice]

Hi, sorry for the delay in replying to this, the answer from the medical team is:

no we generally don’t recommend as shingles is a live vaccine so not for any patients on treatment other than just aspirin, and any MF patients at all regardless of treatment.

Maz

[2hankers2 in reply to Mazcd]

My husband had the shingles vaccine 4 years ago , but wasn't dx with MPN,U till Aug of 2016. He is on Jakafi 20 MG x 2 aday. wonder if the shingles vac is still a problem. Any suggestions, tks, Libby

[Mazcd Partner MPNVoice in reply to 2hankers2]

Hi Libby, in what way do you mean if it is still a problem? Maz

[2hankers2 in reply to Mazcd]

Kevin didn't have MPN,U 4 years ago when he got this shingles shot. If this is a live vaccine and now Kevin has cancer and is on Jakafi, is this shot he had previously going to still be live in him and cause any problems with his disease?

[Mazcd Partner MPNVoice in reply to 2hankers2]

Hi Libby, it is unlikely. Maz

[graymare]

Thank you everyone for your input. I have decided not to go ahead with the vaccine. Will try to stay healthy and unstressed, tho' I may not go quite as far as Twinkly's suggestion of beetroot soup----maybe if I put onion, garlic and beetroot in a paste and had it on black rice crackers it would be tastier. Then there's kimchi----I find it ok in small amounts. Love and good health to you all.

[violeta19]

Not recommended for us to have any type of live vaccine flue jab is alright as its not live it's not for us and i would not take a chance....Violet.

[Purr-cat]

Live vaccines are unsuitable in general for MPNs. There is a new non live shingles one now. I was actually given the shingles and pneumococcus vaccines by my haematologist as shingles makes you feel extremely ill for three weeks with possible permanent nerve damage. This can cause unpleasant nerve pain for the rest of your life which does not respond to pain killers. Pneumococcus is a group of mainly respiratory tract infections such as pneumonia. They also include bacteraemia (a series of blood infections which can be fatal and can develop into sepsis), and bacterial meningitis. There are some pneumococcus infections with milder symptoms though such as sinusitis, but who wants even a milder infection on top of already difficult MPN symptoms? People with long term medical conditions are more vulnerable to these serious infections, both in chances of contracting one and to having complications. MPN patients are particularly vulnerable because of both our condition and our treatment. The haematologist offered them to me as part of my care plan for two main reasons:

1) Prevention is better than cure. It would be particularly tragic to have lived with an MPN for some time only to succumb to one of these infections that can be vaccinated against. Considering the future, MPN patients may have to go into care homes, hospitals or hospices and shingles and pneumococcus are something that spread more when people are living in closer more crowded conditions like this.

2) Also to consider - for ET patients - is that any illness that is so bad it confines us to bed for a period of time is a risk in itself, as the lack of activity will increase the risk of a blood clot, and this is something we must be wary of.

For further information to help decisions on vaccinations see the NHS website and other online sources. For balance it is always best to obtain information from more than one source.

It is best for any of us to consider the evidence and make our own decision about the vaccines. With MPNs we gain experience of planning for uncertainty, which is always difficult.

[WileyFrench in reply to Purr-cat]

Right. In Canada the vaccine - brand name Shingrix - is not a live vaccine and has been approved for use for about the past year. Likely coming in other places too, or already there.

[Spirit123]

Yes I had mine at 70