I have previously posted regarding my frustration at being unable to get the Shingrix vaccination on the NHS despite taking MTX at 20mg. I believe I would be eligible if I was on greater than 20mg as I am taking no other meds.
I am 62 so also ineligible based on age.
Having come up against a brick wall with my GP and Rheumatology I have decided to go private as I am worried about potentially getting Shingles which I understand could be even worse if immunocompromised.
So I would be interested to know if anyone has gone private in the UK and if so who the provider was and whether it was an easy process.
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Hightower62
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Unfortunately you are correct you need to be on greater than 20mg MTX to qualify. I think privately you’re looking at quite an expense, as it costs the nhs £160 per vial to purchase, so a private purchase would be much more. That’s before you add on the cost of finding a private health professional to do it. I’ve attached a screenshot of the cost.
Superdrug healthcare clinics advertise Shingrix vaccinations for£450 for the two injections…but I don’t know if that includes actually administering them.
Look them up on line to find a clinic near you.…but don’t get too worried…I had Shingles in my 70’s in my face/head a few years ago …before the non live vaccine was available in the UK, & although very unpleasant…it wasn’t nearly as bad as everyone thinks Shingles will be.
I have had shingles 4 times over the years. My second time was awful I had it all around my waist and from the groin down to my knee. It was agony and I couldn't sleep for weeks. I was given ant viral tablets in a high dose but it still took weeks for it to settle. When I heard of the vaccine I enquired as I am immunosuppressed and don't want it again, unfortunately I was told the same as you, even though my Gp agreed due to my age now 60, I couldn't have it. It seems mad to me.
Thank you for replying, I agree. I realise there has to be a cut off point for eligibility but it seems unfair when it a persons eligibility is so borderline.
Call me cynical but 20mg MTX seems to be a common dose when given without other meds so this seems to be more of a financial decision on the part of the NHS to exclude people on 20mg.
It also seems ridiculous that my wife who is a little older than me will get the vaccine before myself at 65 even though she has no health conditions. (She agrees completely with this view! 😂)
It’s a lot of money but the problem is if I don’t have it now I’ve thought about it then I can guess what will happen. I think it’s called Murphy’s law! 🙈
Hi, just out of interest if you don’t mind. Do you mean that your GP agreed that you should be eligible but was unable or unwilling to refer you for the vaccine.
Try asking your rheumy nurse if your rheumy might authorise it.
If the regulations were written in plain English……things would be much
This 🔽is from the NHS site
Shingrix vaccination eligibility……Aged 50 and over with a severely weakened immune system
You're eligible for the shingles vaccine if you're aged 50 or over and you're at higher risk from shingles because you have a severely weakened immune system.
This includes:
some people with blood cancer (such as leukaemia or lymphoma)
some people with HIV or AIDS
some people who've recently had a stem cell transplant, radiotherapy, chemotherapy or an organ transplant
people taking certain medicines that severely weaken the immune system
You'll be given 2 doses of the shingles vaccine. These are given between 8 weeks and 6 months apart.
Ask your GP or care team if you're not sure if you're eligible for the shingles vaccine.
IMPORTANT
You can get shingles more than once, so it's important to get vaccinated even if you've had shingles before.
This might be a duplicate….. I have a feeling I posted this before.
Thank you for taking the time to look this up, I agree it’s quite confusing but I believe that if the rules are applied strictly the eligibility states that you have to be taking more than 20mg MTX if taking no other immune suppressing medication. There seems to be no flexibility based on an individual’s situation such as the anxiety someone might be experiencing.
I have just phoned the helpline to plead my case and am waiting for a call back so keeping my fingers crossed for a positive response but not really expecting one.
But from the sublime to the ridiculous…I am still getting letters from some official at the DHSS,telling me to get yet another Covid Vaccine….the exact same letter they have been sending for the last two years.
Postage alone would pay for a few Shingrix vaccinations!
At my next rheumatology appointment I will ask if I can have it. I can't at the moment as I am hoping to have a hip replacement soon and have been told not to have any vaccines.
Oh yes, you don’t want to chance it. My mom put off getting her vaccine due to scheduling conflicts. She got shingles a couple of months after. It was both internal and external. I hadn’t know you could get internal shingles. Well over a year after she suffers from severe nerve pain in her back. She takes Imuran so I think that may have played a factor in severity. Her experience motivated me to get my vax immediately. I’d been putting it off.
Well, I did query if it was ok for me to have the vac being as I was on steroids and my surgery said that they want me to have it in order to save me getting shingles. I’m happy with that.
You do understand the Shingrix vaccination will not actually stop you getting Shingles, don’t you? The vaccination will just ensure you won’t get it too severely.
So if you dohave any symptoms…do hop off to get the antivirals asap. But not everyone gets it really badly anyway, I was never in the right age group,& I got Shingles in my head & face…with no vaccination.
Of course it wasn’t very pleasant, & I did have the pins & needles headaches for quite a while afterwards …but was not as bad as everyone seems to think it has to be.
Oh yes of course have the Shingrix vaccination, but what I wanted to get across, is that you will still need to have the antiviral treatment if you have symptoms of Shingles…so don’t think “I’ve been vaccinated I can ignore any symptoms “
I paid £450 for the two vaccines. The only place I could find that would give me them was in Hampstead North London. I live in South West London and there was one very near me but as I am under 50 they wouldn’t do it. I think quite a few places are offering it around the UK now, I think it was still in short supply when I had mine
I did for the NHS one it was horridly painful like a lead bullet slowly implanted. My arm was painful and swollen for over a week. And adding insult to injury I still got Shingles again and had to get Acyclovir again.
I had Shingles really badly and got admitted to hospital for sleeping on a water bed. Dreadful ! but also could not get the vaccine. But I asked RA consultant who wrote to GP to override the Green Book of regs and GP gave it to me. Trouble was it's only 70% effective and I got Shingles again last year. But take heart if caught early then Acyclovir stops it really well and prior to the vaccine I was prescribed it as a preventative. Either way you go might be worth asking RA consultant but if you get it then the treatment is fast and effective now.
travel health clinics will administer it under a private prescription. City Doc are across the country and you may have one locally citydoc.org.uk/conditions/s...
I'm taking the maximum dose of Methotrexate and have done for years.
Argued like crazy during the pandemic, to convince my GP that I should be in the extremely vulnerable category, but I failed.
Now, this month, totally out of the blue, someone in my surgery rings me up to offer me the Shingrix vaccine, because I'm taking full dose methotrexate!!
She told me that the rules had just changed, so I now qualify, even though I'm 63.
Hi, thank you, I had exactly the same problem getting put into the extremely vulnerable category so I understand how stressful this was. Do you mind telling me whether you are on over 20mg MTX as this seems to be the cut off point for eligibility.
hi I’m a littler confused my consultant did a blood test on me and said I didn’t need to have the shingles vaccine due to me having antibodies!!has anyone heard of this before??I needed to have the flu and the pneumonia one🤔
My rheumatology team have put me on Sarilumab in trial and said although I have antibodies to shingles (had it about 10 yrs ago) I should get the vaccine. They will contact my GP.
I’m in Scotland and have just been given first one because I’m immune suppressed. I’m on Mycophenolate 2g - which is a third less than I was on previously but guess it must still tick the criteria box. I’m 61.
What annoys me on your behalf is that doses of immune suppressing drugs can affect us all so differently. I had to stop MTX at 17.5 -tried by injections and oral - because it was so immunesuppressing for me that I caught every bug doing the rounds and was badly affected - plus my liver disliked it and even at lower dose it still made me very sick. I think the eligibility criteria should work by the medication and condition regardless of dosage.
Mine gave me a very sore arm which came on rather quicker than others. I’ve stopped my Mycophenolate for a week just as I do for all my vaccines in hope it gives me max protection. I probably won’t for second one but we will see. I apparently had shingles last year so my GP said but it only affected a nerve running through my left breast. I took acyclovir and the pain went away after a few days but recurs every 3-4 months for a few days. It’s a breathtaking pain and if this is post herpatic shingles then I’d dread to think what worse stuff it can do. But I couldn’t have afforded to get it privately so glad my 2g Mycophenolate qualifies me for NHS. Could you get your dosage up to the required amount just to qualify you perhaps or is that a terrible suggestion? I don’t know much about criteria but I find the cut off exasperating for you!
Thank you for your reply it is appreciated, it is really exasperating as you say. It seems like splitting hairs and although I appreciate there has to be a cut off point I believe that some people are getting the vaccine when others aren’t when on the same meds depending on GP or where you live. It seems unfair that there doesn’t appear to be a consistent interpretation of the rules.
I feel for you. I have had the Shingrix vaccine, I've had multiple shingles outbreaks I've lost count. I was on 20mg MTX then put on 10mg. I was told it costs £400 but I was lucky enough to get this free (in Jersey). I'd keep at them, why should you have to pay, they put you on these meds that compromise you. Good luck. Don't give up.
That must be so frustrating for you. I haven’t been offered the vaccine either and I’m severely immune suppressed but not sure I would have it as I’ve failed to produce antibodies for the pneumonia jab twice. I feel your frustration though as my husband who is now 60 and has had pneumonia twice in the last two years has been refused the pneumonia vaccine as he’s under the age of the ‘normal’ rules and doesn’t have any underlying health conditions he was hospitalised for 5 days last time just before Christmas and is my carer. Seems crackers to me. Hope you manage to sort it.
I ‘m a bit confused by the mention of 2 doses as I only had one so has it changed? This was 5 years ago when I was coming to the end of the exact age of entitlement of 79 as they did it then. I’d been trying to have it for most of that year as had always been out of sync with previous ages. I was met with vague response of “I’ll look into it and let you know” but they never did. Eventually I asked my named GP when seeing her for something else who looked it up online and said “Oh yes so you are!” - seemingly completely unaware of the NHS poster in the waiting room saying if you were 79 to get the Shingles vaccine! So I eventually had it just in time - just one. It sounds as though many GPS are still not up to speed with understanding the eligibility for this vaccine. I wanted it because my brother-in- law with RA had it very badly and it led to dire complications. I don’t take Immunosuppressant medication though my daughter does and at 58 she isn’t aware of the possibility of being eligible for the vaccine. Good luck with obtaining your’s.
I qualified only because I have been on high doses of steroids, have severe asthma. Bronchiectasis, adrenal insufficiency and RA. I have had multiple illnesses over the last year, including a hospital stay for the whole of January last year. My GP fortunately agreed. However, I was terribly ill with both doses for about a week. When I had the second dose I had had Covid fairly recently, but still not something to take on lightly. I have no resistance to anything, if someone has something near me I catch it so probably worth it in the end, but I had to brace myself for the second dose! I would plan carefully just in case. It really annoys me that they continue to advertise the shingles vaccine when in reality it is very difficult to get. I wish you luck and all the best.
Sounds a bit like a postcode lottery. I am on methotrexate 17.5mg and etanercept. I'm 53 and my GP gave it to me. I'm a children's mental health worker in schools and colleges. I was relieved as I seem susceptable to all the lurgies.
hi there also adding I’m 56 and shingrix is the one you need 2 doses as you mention you need the non live version. I had it as I caught shingles the year prior and you need to wait a year after if you had it , the shingles …painful
Hi Hightower62I'm on Humira so have lowered immune system. I got shingles about 18 months ago. It was caught early and luckily was mild. I took the antivirals with no issues. Then I got shingles again. Still only mild. Took anti virals. After the second time I was given Shingrix. I had no problems with the vaccine at all. I've recently had shingles again, despite the vaccine. It was very mild again this time, had the anti virals.Its feeling like groundhogs day at this point. My gp told me that eligibility for the vaccine was on a case to case basis for under 70s. It must be frustrating to hear others have been given it in the same circumstances as you. It seems ridiculous that you can't access it on the nhs. Hope you get it sorted.
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Since starting treatment for RA in April, my cycle has been all over the place.
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Revert to lower dose of methotrexate due to blood testing becoming unavailable?
