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.

Said pharmacist can vaccinate children- he’s given DD flu vaccines in the past.

Hmm then I don’t know. He should be able to work from the National Protocol if he’s completed all the appropriate training etc.

Look I’m not excusing the inequalities or inefficiencies in provision. Just trying to explain it.

Us clinicians don’t make the rules, we just follow them.

Ah, so I will have to wait 5 years. DH is 74 so he should get it.
I'm down as severely immunocompromised for covid, had 8 vaccines but I looked at that green book and I don't meet the threshold.

@Pippim, I think your options are to discuss it with your GP surgery (as the NHS and local authority public health literature advises), and specifically ask for it for XYZ reasons; and/or consider a private vaccination.

GP surgeries do have discretion and I always found that mine appreciates a calm explanation delivered with back-up evidence.

The Green Book definitions of Clinically Extremely Vulnerable for covid boosters, and severely immune-compromised for Shingrix, have ended up being slightly different; but as you'll see from my essay long post to @OhYouBadBadKitten a few days ago, I don't think that was necessarily the intention. The pandemic got in the way of a smoother outcome.

I had my first Shingrix vaccine 4 weeks ago, have an app in Dec for second round. Im 51 and have Systemic Sclerosis( Scleroderma) and pulmonary fibrosis. I take Mycophenolate at 2000mgs a day. It was mentioned I was elligible for the vaccine by the practice nurse who gave my my autumn Covid/flu booster and she booked me in for first vaccine 2 weeks later. Reading the comments, it seems Ive been lucky as I knew nothing about it.

I was desperate for the vaccine as I had Shingles 2 years ago. It covered half my body and lasted 4 months. Not even IV antivirals touched it. Ive never been in as much pain in my life and im still very badly scarred and have neuropathic pain.
If you think you fill the criteria, please please go for the vaccine, Shingles can be VERY bad for us immune suppressed peeps.

@Redannie118 thank you so much for your post, and for this:

If you think you fill the criteria, please please go for the vaccine, Shingles can be VERY bad for us immune suppressed peeps.

Thanks very much for this thread @AutumnCrow.
I wonder if you could help clear something up for me?
I am about to start on the same medication you take. I asked doc about the shingles vaccine and she said there was no need for it. Apparently they had checked for varicella antibodies in my blood samples anyway and they were present, ie I was positive for varicella antibodies.

But I'm not sure...
Don't most people here get chickenpox as children (as I did) and so may have residual antibodies anyway? Or maybe I'm wrong on residual levels, I haven't found much data on this.
Aren't people usually recommended the vaccine anyway?
I'm very confused now.

@Silverstarnight, hello

I'm sorry it's late and I'm quite tired but I'll have a go at expressing my thoughts and tell you what I would do in your shoes.

First: do you know why you were tested for varicella? Before I began Adalimumab I was tested for the usual organ functions, TB, Hep B and HIV, but I don't recall anything about varicella-zoster at that time (2020).

I believe, though of course I may be wrong, the presence of varicella antibodies in your blood tells you that have had chicken pox and that you are likely to have a good level of immunity to chicken pox. It doesn't mean you won't get shingles. So I don't really see what the doctor was getting at tbh.

If you are 50+, then once you have paperwork naming Adalimumab (such as a clinic letter citing the prescription, or consultant's letter, or delivery document from the drug provider, etc) then I would speak to your GP surgery as per the NHS advice regarding this public health programme and request the Shingrix vaccine.

You can only have it done at your GP surgery anyway.

I wish they had a program like that here for the shingles vax. My only option is private which I’m saving up for. I’ve just started a new medication which had my immune system stripped completely so I’m worried about getting shingles.

£450?!!! 😱

I just paid privately for it in Canada. It was $330 total for the 2 shots, so about £195. I thought that was expensive!

Shingles is a terrible illness.
It cost me way more than 1000 - with time off work, medication and three months of pain. Thank goodness it was not in my eyes and my vision was not affected.
I seriously think Shingrix is worth paying for if you can not get it for free.

Thanks you so much for all the information @AutumnCrow.
They just did the varicella screen as part of their routine blood screen I think. There was no particular reason for it in my medical history or anything.
I'm not in the UK so that might make a difference. I'll have to pay for the vaccine. You are lucky the NHS has started covering it.

I just saw this thread and am wondering why it's only over fifties. I'm very immunosuppressed but in forties.

I'd also be interested to know this, mid-forties and on Biologics/pick up absolutely everything going

I don't know the answer to the over-50s rule, but it'll be in the JCVI sub-committee minutes somewhere. I suspect it's similar reasoning to a lot of public health and economic guidance for the 50+ cohort, whom the government regards as 'older workers' and 'older people'. I've seen a charitable enterprise refer to 50+ people as 'mature'. Seems to be a social policy cut-off point.

Maybe it's on the basis that they can get data showing whether Shingrix is effective for people on immunosuppressive medication/take-up is high enough (I'm guessing that there are higher numbers of antivaxxers below 50, going by Covid, for example, and booking a second appointment might mean fewer people complete the course) and it makes a measurable dent in the numbers of people suffering from shingles?

Typical, my husband is on both azathioprine and adalimumab but not eligible as he's only 40.

Had shingles on his face earlier this year and has been left with some nerve damage. It's no fun, so if you're eligible please push for it.

DH (53, pancolitis 20+ years) had to come off of adilmumab and start on filgotonib. His IBD nurse sent a letter to the GP with a strongly worded "request" for shingrix. With the additional comment that she was surprised my DH hadnt been offered this whilst on adilmumab. I'm guessing she's run into this issue with gp surgeries before.
If any of you are having issues getting your shinrix jabs, contact your consultant team and ask for them to request the vaccine for you.

GP practices can barely keep afloat with their current workload without calling people in for extras, however worthwhile. After my colleague resigned due to work related hypertension, I'm now the only trained nurse (who works part time and is going early in two years myself) for nearly 10,000 patients. If you want your first Shingrix from me you'll be looking at six weeks.
No need to go through a consultant though, just ask the surgery yourself if you think you're eligible and the nurse will add it to their list to look into.

I find it crazy that I’m not eligible- on a biologic but under 50. I ended up paying privately. My rheumatologist said that if I could afford it I should do ahead and he was embarrassed he couldn’t give it to me for free.

@Ibuamnti what you might not realise is that in GP land we identify eligible patients by running system searches, based on things like medication. Biologics tend to be supplied by a secondary care directed provider and so won’t be on your medication repeats list, for example. So in effect the system “doesn’t know” you’re on it, and so can’t identify you as eligible.

If we have a letter from a consultant saying “please offer Mrs Bloggs Shingrix” we can then add the read code for eligibility, and send you an invitation. If a patient emails and says “I think I might be eligible as I’m on adalimumab” the email will be pinged to the GP, or lead nurse (I.e. me) and I can invite you in.

@Twilightstarbright Shingrix isn’t licensed for under 50s (unless you’ve had a stem cell transplant).

@sidge, not quite sure if you're being patronising or the system you use in your surgery is a bit outdated, but patients on biologics require regular blood tests, normally done at GP surgeries. Aside from this clinic letters are automatically sent from secondary care providers to "GP land" updating medications and current health status.
In immunosuppressed land, our GP surgery contacts a patient regarding other vaccines, such as covid and flu because of immunosuppression status.
Hth

@Ibuamnti neither to both.

Yes of course regular bloods are needed and letters added to the system. What I’m saying is that when we run searches eg for flu, shingles or pneumococcal vaccs, they’re created based on meds eg a biologic, or a Snomed code for immune suppression. They’re not created based on the need for blood tests. The searches are only as good as the codes that have been inputted, so if Arden’s created a Shingrix report based on eligibility due to a biologic it won’t find you as the biologic isn’t on your medication list as it’s not prescribed by your GP.

If a code for eg immune suppression is inputted by the data team when a letter is received from the hospital, it may be found if the Arden’s search is set up to find it.

Im writing this as both the lead nurse vaccination lead, and a person on a biologic so I know how it works, and wasn’t trying to be patronising. Just trying to explain why patients might not be called when eligible.

We have nearly 10,000 patients on our list, keeping on top of eligibility and recall is a mammoth task. Especially when consultants might tell a patient to come and have a vaccine they’re not actually eligible for which is a whole other issue!

My rheumatologist prescribes my meds and gives me my blood forms to book my tests via the hospital phlebotomy service. I organise it all myself.
She puts everything, including the blood results, in her letters to gp.
However, the last time I went to the gp, I happened to mention my mtx injections and she (gp) had no idea I was on them. She asked me about monitoring and I just reasured her it was all in hand.
I don't think anyone has time to read the letters. I don't think the mtx is recorded anywhere.
I just had a covid jab though, so that must be through a different system.

Thank you for flagging this. There has been lots of adverts on the tv recently about this so I'm surprised more don't know. We have also put it in our patient newsletter.

We do have all our patient's notes flagged but we don't have time to call them in. We do catch patients if they have an appointment for something else though.