Hi, my wife has recently been diagnosed with CLL fortunately at 0 stage at present. I have reached a landmark age (70) triggering an invite for a Shingles vaccination which I am believe is a live vaccine and if I have a reaction this could be a potential danger to someone with a compromised immune system. There is some post on this subject however I'm not sure if it's up to date. Can anyone advise the latest opinions?
Many thanks
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peterOJ
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She is the one who should not get a live vaccine. I am not sure about you. In fact, getting the shingles vaccine is how my CLL was discovered. I had a bad reaction to it. I agree with talking to a CLL specialist. I think it would be much worse for her if you actually got shingles, god forbid, someday, than getting the vaccine.
Hi, I was wondering what your bad reaction was to the shingles vacination? My fathers CLL was also identified after a bad reaction to the vaccine. He has had constant itching all over his skin which after 18months is still ongoing. He has been given creams and tablets but nothing is helping. The GP's are saying the itching is not related to CLL or the shingles vaccine? Its just strange that it all started as soon as he received the injection. Any help, guidance or support would be appreciated.
For what it's worth, my CLL oncologist from MD Anderson said in no uncertain terms that my husband (a healthy 70 years old) should NOT get the shingles vaccine because of the risk to me.
This whole discussion will be moot in a few months when the new vaccine Shingrix is FDA approved... it WILL BE suitable for CLL patients as well as the 50+ population...
The current vaccine is 52% effective, the new one is 90% effective against zoster reactivations... Build a better mouse trap! 😜
Living in hope here Chris, as I cannot help but wonder how long we will have to wait in the UK for NICE to approve the Shingrix.
Oh how I wish it had been available for you and many of our friends here.
I know a certain Scottish gentleman who will second that, his wife too.
It is one of a few persistant fears I have, as I know how horrible a disease it is. I was unusual in having chicken pox as a child, then getting shingles as a teenager, fortunately with none of the nerve damaging effects that are so debilitating.
Having had shingles once is no insurance against having it much worse in the future, so the new vaccine cannot come soon enough for me.
Thanks for the update, um about that mouse trap...
Thank you all for your comments....... it appears there is no definitive answer as with most things in life it's balancing the risks. At present I'm inclined not to poke a stick in the hornets nest by having the current NICE approved vaccine but will review if things change (never say never!).
On no account should one consider the current shingles vaccine, that would be a very bad idea. The current vaccine is a live one that could trigger shingles in the immune compromised, that's us. The new vaccine, when it comes will not be live and as Chris said, should give a level of immunity to 90 % of us. I think I have got that right Chris.
Never underestimate how vile shingles with its lasting painful effects is.
I always remember an elderly gent showing me the result of having shingles nearly two months after it had broken out. His torso was black, blue and yellow still, he said he had never felt pain like it.
Not all would have it that badly, or in the body, however it is imperative one gets antivirals at the very first tingling and pinking if possible.
Hope we who have escaped so far don't find out for ourselves how bad it can be.
I will be there with arm held out as soon as it becomes available.
My wife's consultant also advised that there was a very low risk, perhaps because she is at stage 0, not receiving treatment and provided I didn't have any reaction to the vaccine. I have now had the vaccine kept clear 😷 and no reaction 👍
Very scary I went to my GP last Thursday he recommended a Shingles vaccine. Because I have been reading like a maniac since being diagnosed 4 weeks ago I told him CLL patients should not have live vaccines.
Some GPs are more aware of CLL than others, my wife's GP has a number of patients that have been W&W for some time so he knows the issues however you cannot be certain that the rest of the team are so diligent. The Internet and this forum (and other forums) are a good source for checking areas of concern - be careful out there.
My wife's Haematologists advised that the risk of me passing shingles to my wife (CLL patient) from my possible reaction to the shingles vaccine was minimal. This may also be because she is not receiving treatment and hence her immune system is relatively good.
The risks are:
Your reaction to the vaccine - Unknown but very small chance of adverse reaction. Fortunately I had no ill effects.
Your husbands CLL treatment status - is his immune system ompromised by any treatment.
There is a new far more effective shingles vaccine due for FDA approval next month.. and most people including some CLL patients will be able to have it... guidelines aren't available yet...
No... it is currently with the FDA, and approval has been sought from the EMA in Europe, Canada should also be reviewing it. Don't know about the U.K.
From GSK
The candidate shingles vaccine, Shingrix, was submitted for regulatory approval to the FDA in October 2016, to Canadian regulatory authorities and the European Medicines Agency in November 2016, and to Japanese regulatory authorities in April 2017. Shingrix is not currently approved for use anywhere in the world.
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