Please take note of this warning and instruction now we have received further information about developments with the commencement of the UK campaign to vaccinate all those at the age of 70 &79 against shingles.
We have been made aware that as of this week the NHS may be advising the co-administration of shingles vaccine with the flu vaccine.
The shingles vaccine is a Live vaccine and CLL patients should not have it.
This is apparently not clear in the supporting documentation being sent to GPs
Be clear the shingles vaccine is a live vaccine and live vaccines may be a danger to immunocompromised patients including CLL.
The late Terry Hamblin also strongly advised against using a live vaccine and we understand that this is the current view of the CLL Specialists.
Your GP or Nurse Practioner may not be aware of this advice and we strongly recommend that when you have your flu vaccine that you do NOT have any LIVE shingles vaccine.
“A little while ago a vaccine made from attenuated live virus was developed and used to prevent chicken pox in children in some countries (though not in the UK). This same vaccine is offered to older people to prevent shingles. CLL experts have determined that as it is a live vaccine it should not be given to CLL patients, although small numbers have had it safely.”
Another reference to support patients can be found in a Dr Claire Dearden (Royal Marsden NHS Foundation Trust ) paper -
Excerpt: “It is important to note the potential danger of administering live vaccines to patients with CLL. These include polio (oral), typhoid (oral), yellow fever, measles, mumps, rubella, BCG and Herpes zoster. (Zostavax) “
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Professor John C. Byrd, (M.D. D. Warren Brown Professor of Leukaemia Research Professor of Medicine and Medicinal Chemistry Interim Co-Director, Division of Haematology-Oncology, Department of Internal Medicine Associate Director for Translational Research, The Comprehensive Cancer Center The Ohio State University Columbus, Ohio, 4321,)has released the following statement for dissemination -
"I have seen a lot of questions about vaccines that have live vaccine components. In particular, the varicella zoster virus vaccine which should not be given to CLL patients due to their immunocompromised state. Some practitioners are mistakenly giving this and it places CLL patients at risk. CLL patients can be administered vaccines that are not live (such as the pneumovax). Please feel free to disseminate this.
...
The FDA required DRUG LABEL of Zostavax states...
Contraindication for use:
Primary and acquired immunodeficiency states due to conditions such as: acute and chronic leukemias; lymphoma; other conditions affecting the bone marrow or lymphatic system; immunosuppression due to HIV/AIDS; cellular immune deficiencies.
The vaccine on healthy people 50 to 60 years is only 52% effective...
This is the literature healthcare workers in England received to accompany the vaccine programme. The concern of UK CLL specialists is that there is very little prominence given to the real dangers of using this vaccine in immunosuppressed patients.
A consensus view of leading UK CLL specialists is that this vaccine should *NOT
*be given to CLL patients.
The shingles fact sheet is available in the link below at the very end under contra-indications for receiving Zostavax® there is a warning
The vaccine should not be given to a person who:
1. Has primary or acquired immunodeficiency state due to conditions such as: acute and chronic leukaemias; lymphoma; other conditions affecting the bone marrow or lymphatic system; immunosuppression due to HIV/AIDS (see below); cellular immune deficiencies
Following on from Chris’s comment on the vaccine efficacy the fact sheet mentions that the vaccine only reduces the incidence of shingles infection by 38% in the healthy population aged 70 and above.
People with CLL are immunodeficient before during and after treatment and should not be given this vaccination
Does anyone know if it would affect us if a family member had the vaccine? As my parents are over 70, if they had the vaccine would that increase my risk of getting shingles from them, if they've had a live vaccine?
Good question Louise, i do not know the answer, however you just beat me to asking it. Last year, my first with CLL my GP game me and my wife Flu vaccine on request of my consultant, should we both keep with 'flu-only'?
Rob
Thanks Hairbear
I've will contact my surgery as I suspect that sometimes as we are in a conga line for flu vaccine, that the nurse injects without checking always with the patient. May suggest immuno supressed individuals have their flu vaccine at a different appointment. I can't be the only one in a large practise.
Thanks for the heads up although I had read about it the shingles vaccine, I did not connect with the flu one.
Bub
We seem to be experiencing increased technical difficulties today. Nick has asked me to post this on his behalf:
This is an answer I fished out to the same question amongst
I don't know if I am having a moment here (my notes will be at home), but I am sure I had a discussion with my haematologist about 6 months ago about flu and singles vaccines.
I will have the flu one, but I decided not to have the shingles one, principally because it was very cumbersome (required several jabs over a time period). The vaccine talked about in this strand appears to be a one-off. I won't have it!
BUT am I totally off my head, or are there alternative (presumably non-live) shingles vaccines (which is the one I decided not to have anyway)?
The vaccination being used in the UK immunization programme is the live vaccine Zostervax and should not be given to CLL patients,
I am not current on the method of administration, progress, availability or efficacy on an inactivated version , or other blood derivatives like VZIG. Perhaps someone more informed/qualified can answer further?
Nick
Following on from the queries above, and LoraHU post, I have raised with my surgery whether my partner should have the vaccine. Having seen the horrendous effect a really bad dose of shingles can have, I am a little reluctant to deprive him of this protection. I wonder just how rare the occasions are, when a rash can appear after the zostervax, and how infectious it would be. I think the surgery are raising the question with public health, be interesting to have the reply but it will be a few days. Suspect it will be down to each individual, but hard to assess risk without all the facts.
On a positive note my raising the issue of having to have the flu jab at the same time as 200 others, (last year it was a conga line of patients), has generated a rethink and immuno compromised patients are to be given their jabs separately.
Bub
Further to the paragraphs above, I don't know why I bother. The practice nurse made very heavy weather about me having my flu jab not in among acrowd of patients. Now I'm the last to be done in October, so I can wait outside until called. Plus I have just been invited to have the shingles vaccine at the same time. I despair No response about partner jab for shingles.
Hi just been reading about the shingles injection and was getting bit concern,as it's seems so complicated. My gp has given me the flu jab this week and said I would be okay. So here's hoping he was correct.
Good you have had your flu jab - the shingles jab is a seperate one .
The risk was highlighted for those aged 70 and 79 this year as there is a national campaign to vacciniate them against shingles. We should just remain aware that as immune compromised, CLL patients should not be vaccinated against shingles - there is one in trials currently that may offer a future solution for us..
I live in France. I was just going to ask does same apply to Flu Vaccine? - they are hot on older people taking up their Flu Jabs every year and I never have.
I'm still trying to work out if my Myelodysplastic Syndrome (MDS) confirmed diagnosis here December 2011 is similar or connected to CLL, a community I've recently joined although I am a Headway membr having had a aneurysm and brain haemorrhage here March 16 last year. The french call MDS - SMD [syndrome myelodysplasia] and I am type CRMD having quarterly blood tests.next one due within a couple of weeks - I try to keep to a fairly regular 13 week pattern.
Don't take this as being flippant but I have enough troubles coping with after effects of my Brain Injury to give much thought to my MDS. If someone can reassure me about whether there is a connection or not CLL then I'll need to keep in contact on these forums as well - because trying to get information in France, in english is pretty hopeless and I'm also due to move home in 17 days.
Hi SAMBS do you have CLL? If not I suggest you do join an MDS specific community. MDS UK may be very helpful, people there will be informed about your needs in relation to MDS and will be able to answer your questions. ,
MDS UK have a good website providing information about UK regional support groups, MDS specific information and an active on-line community made up of people who share the challenges of living with MDS
This is the link to their on-line forum where people with MDS are discussing issues specific to challenges you may face mdspatientsupport.org.uk/fo...
I do not know about the flu vaccine and MDS but .
"Shingles vaccine is NOT advised in MDS
Urgent Clarification on shingles/varicella vaccine policy for MDS patients
MDS specialists have issued the following advice regarding shingles vaccine:
“Current advice from the UK MDS Forum is not to give the Live Varicella Vaccine to patients with MDS.”
You can read further information on the topic, on the UK MDS Forum webpage (the specialist website) here: ukmdsforum.org/
If you are due this vaccine – or if your GP is mentioning it – please refer them to the website above, where they will be able to read further details – or ask for clarifications if needed".
Good luck with your future tests, MDS UK may be able to hook you up with expats or MDS support in France too?I hope this is of help
I had this vaccine with no difficulty early on when my immunity was good with no problems. If your numbers are good you should talk to your doctor because you do not want to get the shingles if you can avoid it!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
No response about partner jab for shingles.
What about a 3rd vaccine shot (booster) for CLL patients?
Nuvaxovid vaccine in patients with CLL
Paper about immune deficiency in CLL
Recent warnings about vaccine safety
UK CLL Forum *Follow-Up Survey for UK CLL Patients regarding the support you're getting- Please complete if you can.
