I had a Shingrix (shingles) vaccine today, from the NHS (free), because I'm immune-suppressed and over 50

[AutumnCrow]

Just that really. I'm on an immune-suppressing biologic drug for auto-immune disease(s), and after a bit of a tussle with my GP surgery <waves, and thanks> I finally got jabbed with Shingrix #1 this morning.

Next one (2 of 2) is in 8 weeks.

Please may I encourage anyone in the same category as me - immune-suppressed and over 50 years old - to take advantage of this vaccine programme that was introduced by the NHS on the 1st September this year. Boots do offer it privately but the cost for the course is £450 thus prohibitive for many. The NHS jabs via your GP are free. You must go through your GP to receive the jabs for free. This is not an active vaccine and is safe for immune-suppressed people.

Please don't wait to be called in. My GP surgery is having some real time and admitted issues with flagging up patients on immune-suppressing biologics on its (new-ish) data system. If in doubt, ring and explain.

I'm happy to help to look up anyone's meds for them in the 'Green Book'. Mine is Adalimumab, a commonly used TNF-blocker for psoriasis and psoriatic arthritis that for some reason my GP surgery didn't recognise or compute.

It’s not that simple.

You have to be SEVERELY immune compromised. Not as many people are eligible as think they are.

Just being on methotrexate, or a biologic, isn’t enough. It’s dose dependent.

Please don’t try and book until you’re invited. Feel free to make enquiries but don’t just make an appointment and turn up as you may leave disappointed and unvaccinated.

Disclaimer - lead nurse practitioner and vaccine lead nurse in primary care and spending a lot of time sorting out shingles vaccine queries…

I had a callback from the practice nurse yesterday after I emailed to say that I was the first 'young' person to contact them about it and I was eligible due to my Cosentyx yes, I know, that's why I emailed to ask for it as you hadn't contacted me.

It's a bit inconvenient, as the only Shingrix trained HCP only works three mornings a week, but they've never needed to employ somebody to offer it in more working friendly times before. And it's still less inconvenient than coming down with Shingles...

Thank you.
I'll look into this

Our practice has a computer system which flags up who you are to the receptionist when you ring up for any appointment, and it uses your DOB as main identifier. So it flags if you are asking for something you are not age qualified for, and the receptionist will establish your eligibility (if they can) or will arrange a call back from a nurse to establish eligibility.

Rule of thumb - if you were eligible for the spring covid booster (only for the severely immune compromised), you'll be eligible for this. If you have immune issues, but were not eligible for the spring covid booster, ring to check

Give us a chance. We’re still delivering the flu and Covid programmes as well as pneumovax , and shingles extension roll out. As well as all our normal work. And dealing with about a dozen extra queries a day regarding a very complex shingles programme!

In Scotland, you will be invited if you are eligible. Do not ask GP practice as they no longer do vaccinations. You will receive a letter when they are doing the vaccinations.

Here's the definition of severe;

Box: Definition of severe immunosuppression for the Shingrix vaccine programme

Individuals with primary or acquired immunodeficiency states due to conditions including:

● acute and chronic leukaemias, and clinically aggressive lymphomas (including Hodgkin’s lymphoma) who are less than 12 months since achieving cure
● individuals under follow up for chronic lymphoproliferative disorders including haematological malignancies such as indolent lymphoma, chronic lymphoid leukaemia, myeloma, Waldenstrom’s macroglobulinemia and other plasma cell dyscrasias (N.B: this list not exhaustive)
● immunosuppression due to HIV/AIDS with a current CD4 count of below 200 cells/μl.
● primary or acquired cellular and combined immune deficiencies – those with lymphopaenia (<1,000 lymphocytes/ul) or with a functional lymphocyte disorder ● those who have received an allogeneic (cells from a donor) or an autologous (using their own cells) stem cell transplant in the previous 24 months
● those who have received a stem cell transplant more than 24 months ago but have ongoing immunosuppression or graft versus host disease (GVHD)

Individuals on immunosuppressive or immunomodulating therapy including:

● those who are receiving or have received in the past 6 months immunosuppressive chemotherapy or radiotherapy for any indication
● those who are receiving or have received in the previous 6 months immunosuppressive therapy for a solid organ transplant
● those who are receiving or have received in the previous 3 months targeted therapy for autoimmune disease, such as JAK inhibitors or biologic immune modulators including
● B-cell targeted therapies (including rituximab but for which a 6 month period should be considered immunosuppressive), monoclonal tumor necrosis factor inhibitors (TNFi), T-cell co-stimulation modulators, soluble TNF receptors, interleukin (IL)-6 receptor inhibitors.,
● IL-17 inhibitors, IL 12/23 inhibitors, IL 23 inhibitors (N.B: this list is not exhaustive)

Individuals with chronic immune mediated inflammatory disease who are receiving or have received immunosuppressive therapy

● moderate to high dose corticosteroids (equivalent ≥20mg prednisolone per day) for more than 10 days in the previous month
● long term moderate dose corticosteroids (equivalent to ≥10mg prednisolone per day for more than 4 weeks) in the previous 3 months
● any non-biological oral immune modulating drugs e.g. methotrexate >20mg per week (oral and subcutaneous), azathioprine >3.0mg/kg/day; 6-mercaptopurine >1.5mg/kg/day, mycophenolate >1g/day) in the previous 3 months
● certain combination therapies at individual doses lower than stated above, including those on ≥7.5mg prednisolone per day in combination with other immunosuppressants (other than hydroxychloroquine or sulfasalazine) and those receiving methotrexate (any dose) with leflunomide in the previous 3 months

Individuals who have received a short course of high dose steroids (equivalent >40mg prednisolone per day for more than a week) for any reason in the previous month

Source

I was refused for Methotrexate 20mg by my gp practice. They said it wasn't in the green book. They also refused a pneumococcal vaccine despite having PsA.

@OhYouBadBadKitten the protocol is over 20mg methotrexate. But I’d give you pneumovax for psoriatic arthritis.

Thanks Sidge, that was my conclusion too. I'm just on the edge, despite sometimes requiring oral steroids (but again being below the threshold at 20mg for 7 days).

Regarding rule of thumb, this isn’t quite true. As an example all people with HIV were eligible for the spring (and more recent autumn) covid boosters, however only those living with HIV who are most immunocompromised ie CD4 <200 are eligible for the shingles vaccine.

I’ll be eventually getting mine as the age range reduces down. GP surgeries must be really busy currently in dealing with these new guidelines at the same time as the annual flu plus the pneumonia jabs.

Agree that being eligible for an autumn covid booster is no indicator

I hadn't spotted that only some of those living with HIV got the spring one.

(I said it was only a rule of thumb!)

Everyone living with HIV should have been offered the covid spring booster and also the current autumn booster. This is defined in the Green Book.

The advice from the NHS here seems clear:

'Speak to your GP surgery if you think you're eligible for the shingles vaccine, but you've not been contacted.'

'Your GP surgery will usually contact you when you become eligible for the shingles vaccine.' [My underlining]

In other words, coding omissions and errors can and do happen, as in my case, or data trawls haven't taken place for some reason. They also missed me out of the spring covid vaccine call-up too, in error. Luckily I was able to book myself one (my 7th!) as soon as the autumn slots opened. I also had to book my own flu jab, for the same reasons of being mis-coded or un-coded.

For a lot of patients in my situation, with multiple other painful conditions, getting shingles would absolutely be the end of the road.

@OhYouBadBadKitten I'm going to have a look for you at the original JCVI advice and guidelines - please bear with. I know you have a rubbish time of things with a couple of the same conditions as me.

Link for for the quotes in the above post ^^. The advice to speak to your GP surgery is also on NHS posters and leaflets.

https://www.nhs.uk/conditions/vaccinations/shingles-vaccination/

Thank you so much @AutumnCrow . I got miscoded for covid and flu even when I fell firmly into the categories for them. As it is, my latest blood tests show low WBC and they are repeating them before deciding whether I can stay on MTX

I've gone down a rabbit hole of Coded Clinical Entries and SNOMED CT Codes now. Will drag myself out and head back to the JCVI minutes from 2019. It's fascinating to look through this window and watch the expert committee planning national vaccination policies, such as rolling out the expanded Shingrix programme, without any idea that Covid was coming round the corner ...

Back later.

Hi again, @OhYouBadBadKitten - how's the storm modelling going?

OK, a very potted summary indeed:

In 2018-2019 the JCVI under Professor Andrew Pollard (who I've got a lot of time for, personally) decided to recommend that the (non-live) Shingrix vaccine should (a) replace the live Zostavax vaccine, and that (b) the cohort to whom it should be offered would be greatly expanded to include those age 65+, and those who were 50+ and immune-compromised.

Of note: JCVI make recommendations for guidelines that then go to the Dept for Health for decision, and then onto the relevant parts of the NHS and secondary/primary care for action.

There were discussions at JCVI about the definition of 'immune-compromised'. It is clear from the minutes of meetings at this stage - 2019, prior to pandemic - that the definition was going to include underlying conditions as well as treatments, and be a pretty broad brush definition, because JCVI determined that the benefits of vaccinating the immune-compromised population and preventing shingles in these patients was a public health priority. A sub-committee was set up to prepare the definition.

And then covid happened.

By the time the definition of immune-compromised appeared, it was heavily skewed toward managing not just the effects of the pandemic, but the social consequences of lockdown. The definition we are left with 'post-covid' (ha ha) is, it would appear, narrower than the original one intended.

However, 'individual clinical judgements by doctors' was always in the documentation. So any treating physician could always look at their patient and say, 'you know what, given that you have inflammatory arthritis and are trying out DMARDs and shingles would absolutely fell you, I'm going to recommend the Shingrix vaccine'. (Or a patient could ask their consultant clinic to write a note to their GP to that effect.)

The intention of the JCVI was to widen participation as far as possible so that over 50s with auto-immune diseases were included, not excluded, as much as possible.

@Sidge wondering if I would count
On Xolair and also autoimmune neutropenia (on GCSF for life)

Thank you so much for this. I’m on an immunosuppressant and get shingles quite regularly so will ask my GP about it.

some gp surgeries will recognise the brand name drugs so if you say I'm on humira they recognise it but adalimumab? No chance 😂

Would also like to point out though- there are 2 varieties - one a live vaccine, those who are immunosuppressed can have side effects from the single dose option. So make sure it's the one OP mentions as I don't believe the one that is 2 injections is live!

My GP surgery is absolutely appalling for calling me for things in spite of being in the severely immunocompromised category. I don’t think I’m coded properly. Luckily for me, one of my consultants is on the JVCI panel so I will talk to him about it if I don’t get anywhere with my GP.

And just to make things even more fun, in the 'Green Book' it comes under 'TNF Receptors'!

I’m on a T-cell co-stimulation modulator plus steroids. It’s a mouthful and I found I was quoting the Green Book at one of the nurses in my practice in order to get put on the list for antivirals for covid way back when.