Additional Shingrix Vaccination?: I have CLL and... - CLL Support

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Additional Shingrix Vaccination?

GerryPL profile image
19 Replies

I have CLL and have been successfully treated with O&V earlier this year. I also had the recommended two doses of the Shingrix vaccination (against Shingles) two years ago. A close friend of mine, who also had CLL but despite my urging did not have the Shingrix vaccination. A couple of months ago he caught Shingles and had weeks of severe pain making him extremely weak. He then caught Covid 19 and died within a few days. His doctors say the combination of CLL damaging his immune system plus the Shingles infection and Covid was just too much for him.

In the light of all this I just wondered if anyone knows whether given my CLL and subsequent weakened immune system its worth me having an additional Shingrix vaccination?

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GerryPL profile image
GerryPL
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19 Replies
mrsjsmith profile image
mrsjsmith

Gerry sorry to hear about your friend.

I had a mild attack of Shingles several years ago and started on a prophylactic dose of Aciclovir. I decided not to have Shingrex because I am concerned about how well our response in general is to vaccines.

I am trying to get my hospital ( currently ignoring my questions ) to test how good my response has been to pneumonia vaccines. I believe in general this area needs more research.

It might be worth checking with an Immunologist, via your haematology consultant.

Colette

GerryPL profile image
GerryPL in reply to mrsjsmith

Thanks, very helpful, I will ask the Haematologist.

GerryPL profile image
GerryPL in reply to GerryPL

If I get any useful information I will put it on this site.

CaptRon1976 profile image
CaptRon1976 in reply to mrsjsmith

As Dr. Koffman says, you can get your pneumonia antibody titres done at any lab with just an order from your primary care doctor.

mrsjsmith profile image
mrsjsmith in reply to CaptRon1976

Sadly not in the U.K. It’s a test my local GP is unable to order and she suggested asking my CNS who says she will ask my consultant ! So far silence, but I will keep asking.

Colette

bkoffman profile image
bkoffmanCLL CURE Hero

You can have your antibodies checked. Not likely to get a robust response to any vaccine for about a year after Obin, Acyclovir 400 2 x a day is great protection- cheap and safe.

Annie1920 profile image
Annie1920 in reply to bkoffman

When do I start counting that time? End of Obinutumazab or end of Venetoclax treatment? Consultant has said take care and go back to 'normal life' and GP has not passed any comment (or shown any interest for that matter!)

LeoPa profile image
LeoPa in reply to Annie1920

A year after the last O infusion

AussieNeil profile image
AussieNeilAdministrator in reply to LeoPa

To confirm, Annie1920 , you count from the last infusion. The anti CD20 monoclonal antibodies can suppress B lymphocytes for up to a year or more after the last infusion. How long depends on when your bone marrow recovers and begins making healthy B cells. The B cells reappearing could also be CLL cells. :(

Neil

GerryPL profile image
GerryPL in reply to AussieNeil

Neil thanks for you ever-helpful replies. Just wondered if the same supressed response applies to previous vaccines such as pneumonia, Hib etc and whether after say 12-18 months from O & V would be worth repeating any?

LeoPa profile image
LeoPa in reply to GerryPL

Vaccines that you got before the O infusions were not impaired in their ability to trigger production of antibodies. The infusion does not destroy memory cells. It prevents creating new antibodies.

GerryPL profile image
GerryPL in reply to LeoPa

Thanks that is really helpful...and reassuring!

AussieNeil profile image
AussieNeilAdministrator in reply to LeoPa

GerryPL That's provided the vaccinations were not done while you had CLL (where the response is reduced). Venetoclax does slightly reduce memory B cell counts.

You can get antibody titres to check antibody responses to past vaccinations. Some vaccinations have boosters scheduled. These could change as we learn more about how treatments impact our immune system. Keep an eye on our maintained pinned post on vaccinations.

healthunlocked.com/cllsuppo...

Neil

GerryPL profile image
GerryPL in reply to bkoffman

Thanks, I did take Acyclovir when I was on Venetoclax but now stopped have a telephone appt with Haematologist today will ask his opinion.

janvog profile image
janvog in reply to bkoffman

I keep Acylocovir always for the case of getting Shingles again in spite of vaccination.

GerryPL profile image
GerryPL

I spoke to my Haematologist today who really confirmed all the advice you have given me. Thanks for that.

He said that it is best to wait at least 12 months from the last Obinutuzumab infusion before having Shingrix for the reason given my AussieNeal regarding CD20 monoclonal antibodies suppressing B lymphocytes. But even though the efficacy could be reduced for CLL he still did strongly recommend Shingrix.

for As regards Acyclovir his view was there is a need to balance the risk of catching Shingles against the (admittedly low) potential side effects. He said that given I have not had Shingles in he past he would not recommend regular Acyclovir. I guess this is one of those issues that different Haematologists would give a different opinion.

He confirmed that it is not necessary to repeat older vaccination such as pneumonia, Hib etc after O&V treatment. He did not think it necessary for me to have antibody measurements at present. As regards booster jabs, I suggested to him that given in the UK at present Covid 19 prevalence is relatively low and we know the efficacy of boosters can deteriorate with time my plan was to wait until the Autumn before having a booster. He thought that a perfectly reasonable strategy.

bkoffman profile image
bkoffmanCLL CURE Hero

All makes sense. I prefer the daily acyclovir, but it's a choice.

Davidcara profile image
Davidcara in reply to bkoffman

Is that daily or twice a day?

bkoffman profile image
bkoffmanCLL CURE Hero

I take 400 mg 2 x a day.

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