Shindrix Shingles Jab

[SteepleMordenGal]

Hello

I’m a 80 year old woman who has CLL for the past 22 years and recently booked an appointment at my surgery for the Shindrix Jab but was told I couldn’t have it due to my age?

Is this correct?

[AussieNeil Partner Administrator]

Hi SteepleMordenGal and welcome to our community.

You haven't shared where you live, but I'm wondering if you live in the UK and were refused a free Shingrix vaccination because you are older than than 79? Per this extract from our pinned post regarding Shingrix healthunlocked.com/cllsuppo... In the UK, “Shingrix, is now approved and available on NHS prescription for anyone aged between 70 and 79 years of age. It is also licenced for adults aged 50 and above, as well as adults 18 and over who are at increased risk of shingles. However, for this group it is not currently available on NHS prescription, and will have to be paid for.” (See the CLL Support UK link in Part 4 for more information.) From 1 Sept 2023, Shingrix will be available to the immunocompromised from the age of 50 and above.

The official Shingrix site shingrix.com/ says "SHINGRIX is an FDA-approved vaccine for the prevention of shingles (herpes zoster) in adults 50 years and older. " and our risk of shingles increases with age, so otherwise this refusal doesn't make sense.

The Shingrix vaccine is unfortunately rather expensive, but as I'm now in my second year of living with painful post herpetic neuralgia, I'd still consider it a very good investment.

Thanks for sharing that you've had CLL for 22 years. Have you ever had treatment for your CLL? Irrespective, sharing that you've had CLL gives all of us, particularly newly diagnosed members, hope.

Neil

[mdsp7 in reply to AussieNeil]

Do you know what causes the post herpetic nerve pain?

[AussieNeil Partner Administrator in reply to mdsp7]

As I understand it, after your nerves recover from the shingles nerve infection damage, your brain interprets the new nerve signalling as pain. It's possible to retrain your brain to interpret the signalling otherwise and ignore it by fooling your brain, but that type of specialist therapy isn't readily available,

Neil

[mrsjsmith]

That sounds like an over enthusiastic surgery nurse. If possible speak to your GP and get it added to your notes, or failing that ask your consultant to write to your surgery.

PS from September immunocompromised over 50 so the criteria has changed. It was 70-79 for anyone

[AussieNeil Partner Administrator in reply to mrsjsmith]

Thanks Colette,

Indeed SteepleMordenGal, if you live in the UK, as I quoted from our pinned vaccination post, "From 1 Sept 2023, Shingrix will be available to the immunocompromised from the age of 50 and above."

Unfortunately, it's not uncommon for surgery staff to be unaware of vaccination coverage for those with compromised immune systems. Some of us have required a letter from our specialist/consultant to gain access to approved vaccinations.

Neil

[mrsjsmith in reply to AussieNeil]

Neil sadly staff are not always up to date with green book ( but it’s forever changing ) and way back I was refused the correct pneumonia vaccine and had to get my GP to write it on my notes.

Colette

[CLLerinOz Administrator in reply to mrsjsmith]

It’s not just staff who aren’t aware of the needs of the immunocompromised in some cases, either. Systems sometimes aren’t as sensitive as we need them to be.

For example, Australians are able to check their immunisation record through a Medicare App which also lists any vaccines they are due to receive through the National Immunisation Program. However, the register listing takes no account of someone’s immunocompromised status.

As a case in point, my immunisation record currently notes that I’ll become eligible for a shingles vaccine on my 70th birthday and details the live Zostavax as the one I would be scheduled to receive. Fortunately, Zostavax is being replaced by Shingrix later this year in Australia so my listing should soon change to reflect that. However, had there been no change, without the knowledge I’ve gained from this community, I might have thought it was ok to receive Zostavax, a live vaccine I should avoid.

Even when the change to Shingrix occurs, my listing will probably still show that I won’t be eligible for it until I am 70 (and only when I’m 70) when, in fact, it will be available to those over 18 if they are severely immunocompromised.

It pays to be well informed.

CLLerinOz

[mrsjsmith in reply to CLLerinOz]

Sadly that is so true. In the U.K. we are slowly rolling out something called My Chart. It comes to my hospital on the 5th of October and we are expecting disruption whilst staff are trained, but as I am an informed patient I know what to expect, but how much will patients know concerns me.

Colette

[CLLerinOz Administrator in reply to mrsjsmith]

I hope it works better than the system I’ve described. 🤞

[mrsjsmith in reply to CLLerinOz]

Me too 🤞 but three major London hospitals are rolling it out on the same day.

[Oleboyredw-uk]

I am in the UK and I was having other vaccinations as part of my post CAR-T. I asked about Shingrix during a jabbing session with the nurse at my GP practice as it was due to be available in September.

The nurse checked the documentation and read the rules out. It was clear to her and me that immunocompromised over a certain age could have the Shingrix vaccination. I'm 67, and got jabbed Monday.

Based on my experience if you are in the UK I believe you should be able to have it. I got given a small card with the batch sticker on it and a space for the second one.

Just in case somebody asks, I also had my flu jab as well, that was at about 09:30 on Monday was a bit low Monday evening, but I went dancing and Tuesday was back on normal form.

Best to all, robin

[Pearlpink]

hi. in the UK, nurses are allowed to give vaccines according to something called a “patient group directive”. This is because they are not usually individual prescribers, and so each directive allows them to dispense certain prescription only vaccines etc. the number of directives, abd the number of times they gave to be changed is now massive, because of covid vaccines etc!

Therefore there can be nervousness prescribing something slightly different to their perception of the directive. I think Neil if completely right that some people probably read it as 79 being the limit.

In the Uk the shingles vaccine programme has always been complicated because initially there was none available! Therefore initially they stopped people being able to get it privately, and running down stocks, and gave all of it to nhs patients who were hitting 70, or nearly 80 as they were the people who would benefit more. Each year they caught up the years in between as they got more vaccine!

I could never remember who could have it and it was so complicated, but a lot of very vulnerable people got the live vaccine first in the world.

They have until recently been very slow with shingrix because of the expense, when there is a cheaper vaccine available for people with normal immunity. I’m only trying to say how confusing it has been! The “green book guidance” that Neil quotes will always tell you the latest position, and the green book (its virtual now) is extremely effective if you print the pages with latest guidance and take it with you. Sometimes though you have to ask the Gp as a written instruction in the notes for you to have it, works as a prescription.

Good luck!

[SERVrider]

My wife (who doesn't have CLL) was offered the ordinary live vaccine and had it. I spoke to my GP who said "Of course you can't have that as it is a live vaccine" and wrote up for Shingrix. They got it in and I had my two doses of it 8 weeks apart. I am 75 and she is 74.

[mdsp7]

In the US, the CDC recommends shingles vaccines for older adults without giving any age limit. See: cdc.gov/vaccines/vpd/shingl...

I hope you will get succeed finding someone to give you your shingrix shots. I felt crummy for a day after my second shot, but I'm happy I got it. AussieNeil's earlier posts convinced me to set up the appointments and get the shots.

[Graham64]

My CLL doctor told me that the Acyclovir I am taking is 100% effective against shingles, whereas Shingrix is not 100% effective.