I am diagnosed with CLL on W&W. It appears Shingrix is only available to over 70’s (irrespective of health status). I am 55.
It appears in the US where medical advice is not constrained by NHS budgets (cynical I know), Shingrix is recommended for the immune depressed (no age limitation) and the over 50s.
so anyone under 70 with cll successful in getting it on the nhs? If so how?
if you paid privately where did you go to get it cost effectively? Quick search is showing up £500 which is at the ouch end of affordability.
Superdrug clinics (none near) say one dose but most say two?
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jusa19
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Hi I have had ahi grizzled vax before ave 70 in the U.K. due to my CLL. Get your haemotologist to confirm your status and eligibility if you can. There is legislation that supports this.
I couldnt believe the fuss they made about me having a booster for pneumonia. I got the letter and the young nurse still darent do it because there wasnt a doctor free. I went again and another nurse kept telling me I needed a letter. I said that I had done all that. She looked on the computer and told me to make another appointment!
We have a big surgery merging with 2 others. I have always thought they were really good but they want more things on the internet. The problem is that when you are in need of pain killers you dont want a physio appt in 3 weeks time.
Hi Anne I am no expert but this is probably because your with a large practice. I am with a small practice. I would imagine small practices are still more familiar with patients where as large practices rely on systems more. However, all practices large or small seem to be relying on systems to cover them against litigation.
Yes you are right. The practice was small and they built a lovely health center with 1 other practice. They are merging with other small surgerys. Anne uk
I had to get a letter from my hematologist for my doctor to give me Shinrex. I was 66 when I had mine. I’m from the UK , Privately it’s £500 but with having CLL I didn’t have to pay. I had mine 3 months apart. Ros
Exactly, the Shingrix vaccine is a two dosage regimen. The Zostavax is not recommended for CLL patients because it’s a live virus vaccine and it can cause problems for people like us. 🙏
Yes I've also had the non live vaccine Shringrix. Aged 63 in the UK. Needed a letter from the hospital for GP . You are entitled to it as an immunecompromised patient. Hope this helps.
I recently had my first Shingrex on thHS for which I'm grateful. I hope you will try every way to get yours as its awfully expensive privately, more than £200 each vaccine and you'll need two shots, think it's a couple months apart, but check this timing. I am in my 70's and in treatment but had to get my CLL consultant to write the surgery asking them to give it. Fair enough, the NHS is clearly in dire straights and the surgery suggested I ask for the letter to be sent to them. I think your only hope is if you can get some push from your CLL medics and that may depend on your individual disease status. I don't know if the age guidelines are bendable for CLL patients and you need to find this out.. It may depend on where you are and who handles the approval. Try to find helpful types with a bit of authority. It's all so exhausting particularly if you're not feeling well. Let us know how it goes and good luc
Later... I see your first reply says there is legislation allowing CLLers younger than 70 to get the Shingrex, as there should be. Try and find out about this and if you can't then ask your medical team.
£200 privately (available for around $250 per shot in Australia, where only the older, not recommended Zostavax vaccine is available free for those 70+) seems a great deal, but I'm approaching that cost in pain medication for post herpetic neuropathy (PHN) - and that's without including the cost of the doctor's appointments. With the chances of having shingles around 30% for those 70+, £200 is a solid investment - even before considering avoiding some of the worst pain levels if you are in the ~30% who subsequently develop PNH - it's a great deal in another way.
I did' t know that there was a 30% chance of getting Shingles after 70, Neil. That means it's worth getting it privately if one has available £440 for the two shots. Trouble is some don't. My experience is its available on our NHS for over 70's. And some here say there is legislation allowing CLLers under 70 to get it, so that should be checked out as legislation like this does change.
The hospital haematology department will write to your GP and authorise any vaccinations. Ask if there are other vaccinations you require. I needed the letter for a top up pneumonia jab. Have you had all your covid jabs? You are entitled to all jabs because you have cll. Thats also flu. Anne uk
thanks to all the responses. Heamotologist has only mentioned pneumonia but I will contact hospital and see if they are willing to write to gp for this and others recommended here. I have had my flu. COVID booked in a few weeks time but not confident what I will be offered. GP couldn’t say if there was a material difference between booster and primary dose.
COVID-19 boosters can be half the dose of the primary dose. Information should be available online. I expect people will be given the correct dose where their patient record is accessed.
Hi Neil, this joining up of medical records in the UK, certainly in my part of Yorkshire is abysmal. For instance I asked my GP's for a print out of blood results and was told that unless they request these from the hospital, they don't get them. I had occasions when I have had to tell the GP's that I have CLL and what my medication is, they had no record. They do now because I insisted that it be put on my records and I take a print out of everything I take to every contact appointment with the NHS. It's quite frightening that we can be given the wrong, even dangerous treatment out of ignorance. I have wondered if there is anything to be gained from wearing a medical bracelet.
I have more blood tests on Wednesday so hopefully all will be stable, if I can get results I will put on because I value your opinion.
My husband had the shingrix jab in case having the live vaccine gave me shingles or chicken pox. Not sure which. The haematologists had to think about this but decided shingrix was safer. Anne uk
Hi Jusa. I was 69 when I had my Shingrix jabs. I had to pay for it £190 each jab. I asked my GP, s Surgery if they would order and give the jab, which they did no problem. It is disappointing that the NHS doesn't fund those that are immunocompromised for the shingles jab as it does say that those with conditions like CLL are at greater risk of getting shingles.
Yes this is my understanding. My original enquiry was to the nurse giving me the pneumonia vaccine and she took the time to look up the criteria on the computer for Shringrix. She read it out and said yes you certainly are eligible but we need a confirmation letter from your hospital.
I was 69 when I requested Shingrix and was given it without quibbles. My husband who was three months short of his 70th birthday was also given the normal Shingles vaccine at the same time. I had asked my consultant heamatologist if she recommended it and was told to have everything I could to help prevent infections. I was still W&W but began treatment two months later. No connection.
as others have said Shingrix is technically only available to the over 70’s in the UK. however if your hospital consultant writes to your GP saying that you should have it then the GP is able to sign a waver allowing you to have it before you are 70. My GP did this for me last year without question before I was 70. Good luck.
I’m 68 and although still strictly on W&W I have develop Auto Immune Haemolytic Anaemia which has put me in hospital 3 times. Discussions are now going on between specialists as to when to start treating the CLL as it is thought to be the trigger for the AIHA.
I received my first Shingrix 3 months ago and recently had the second, both done on the NHS through my GP surgery. I also had a pneumonia vaccination too, my Haematologist is most impressed that I have sought out every available and relevant vaccination, fingers crossed I stay well protected.
I was the one who contacted my GP surgery about having the Shingrix vaccination and had no problem in booking tge 2 appointments.
I am 65, and have had shingles 3 times, although the last was 10 years ago. My Haematologist is "sorting out for me to have one know, but thinking about it, that was months and months ago and heard nothing. I hope you are able to get one
Boots do Shingrix both injections for £450, if you haven't already get Boots card that gains points as you buy things (We uuse Boots Optition service) always seems enough points to get a few Xmas presents! Not connected etc etc
Perhaps Evusheld campaign should (when successful) convert to getting diagnosed immune suppressed vaccinated ASAP for all the vaccines of help.
Having had a mild bout of Shingles a few years ago and being a CLL patient, I wanted to pursue the possibilities of obtaining Shingrix privately. The cost was £550 for two vaccinations approx 2 months apart. Being over 70 the vaccinations then became available to me, which I accepted, through the NHS. However my haematology team insisted I still take Aciclovir tablets daily. The delivery of the Shingrix jabs by my local surgery was only carried out under the recommendations of my haematology team.
I m over 70 andhave a good GP who liaised with Heamotology and approved Shingrux for me. My wife also over 70 was told she didnt qualify for Shingrix and that as Zostavax is live, it was not recommended as asshe may contract shingles and possibly infect me!!
After several discussions with my GP and Consultant and me offering to pay privately, they agreed that my wife could have Shingrix on the NHS. It is worth pushing but wish it wasnt necessary.
That surprises me, as shingles is not contagious person-to-person:
It's not possible to catch shingles from someone with the condition or from someone with chickenpox. However, you can catch chickenpox from someone with shingles if you haven't had chickenpox before.
The blisters that form contain live virus. If a person who has never had chickenpox makes direct contact with an open blister or something with the fluid on it, they can contract the virus and develop chickenpox.
I had Shingrix on the NHS, but I'm 70+ - no idea about age restrictions.
It's two doses a few months apart... when I phoned the GP surgery to book the second dose, the receptionist told me - "But you've already had that vaccination!" I believe the one most people have is one dose only.
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