Here we go again, Flu Shot Thoughts: Trying to... - CLL Support

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Here we go again, Flu Shot Thoughts

Davidcara profile image
16 Replies

Trying to figure out what could be best, before speaking with my MD. Been on initial treatment ibrutinib since May 2020. Labs are good, ANC 4.2, WBC 8, iGG 450, ALC 6.2. Thinking do I get regular dose flu shot, or regular dose flu shot repeated by another regular dose flu shot two weeks afterwards, or high dose flu shot. In addition, wondering about the timing, now or wait another 4 to 6 weeks. I guess another option could be flu shot now and repeat in a few months. Thoughts are welcomed.

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Davidcara profile image
Davidcara
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Davidcara profile image
Davidcara

Forgot to include I am 65 years old. No other major health issues

GMa27 profile image
GMa27 in reply toDavidcara

I just spoke to my GP. He said no to higher dose for me. Too many reactions. Only needs one regular shot- no second shot. 🤷

Davidcara profile image
Davidcara in reply toGMa27

Good to know, thanks GMa27

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toDavidcara

Chris/CLLCanada used to have two shots during the flu season and it was also recommended to me this year as a technique to boost the response for those that respond poorly to the vaccination - like us. With the flu seasons lasting longer, I think it's worthwhile for some of us, depending on how well we make immunoglobulins.

GMa27 profile image
GMa27

Never heard of 2 regular shots given.

I am 65. 2 years in remission after chemo.

I always get the regular flu shot end of September so that it lasts thru March. Loses potency towards the end.

Not sure if my GP will suggest the regular or higher dose for me.

I live in USA.

💕

Davidcara profile image
Davidcara in reply toGMa27

1st shot to “wake up” the immune system, 2nd shot to “seal the deal”.

HopeME profile image
HopeME

Interesting question. I am 58 years old. 6 rounds of BR in 2018. I was just faced with this question at the flu clinic 15 minutes ago. I went with regular dose.

I’m hoping for a mild flu season this winter in the Northern Hemisphere like Australia just enjoyed in its Southern Hemisphere winter. Apparently a minor benefit of Covid 19 awareness in the general public.

Zia2 profile image
Zia2

I am 59 and have had the high-dose flu shot each October since diagnoses 5 years ago, per CLL doc's recommendation. Will get another next month!

annmcgowan profile image
annmcgowan

What is the high dose flu jab. Is it the jab given to the older population?

Ann

Davidcara profile image
Davidcara in reply toannmcgowan

Yes, it’s four times the dose of “ regular “ flu shot. Given to elderly because, the immune system is becomes less efficient as we age.

annmcgowan profile image
annmcgowan

Thank you I will check with my GP that this is what I am getting. I am 68 so I should get this.

Ann

SeymourB profile image
SeymourB

Which vaccine to get? How many coins do you have to flip, and does the nurse get a coin, too?

So many possibilities, so many supply-chain and reimbursement possibilities. I'll try to break it down some so we can argue effectively.

For many of us, we just get what's offered, and it's too much trouble or even impossible to argue with doctors, clinics, or pharmacies, or they only stock the mainstream choices.

There are several overall categories for flu viruses, and some have combinations:

Live inactivated - not for us - risk of actual influenza infection!

Egg based - cheaper to make? some people are allergic to egg, though

Trivalent

Quadrivalent

Adjuvanted - stronger response. May have a stronger reaction at location of injection.

Cell grown non-egg based

Recombinant non-egg based

High Dose - good for CLLers and those above 65 because of our lower immune system function, but pharmacies and clinics may not offer to below 65. May have a stronger reaction at location of injection.

2nd Dose - not officially sanctioned, available if you can find a pharmacy or clinic that will do it. Supported by some research for over 65 and immune compromise.

When getting a vaccine, ALWAYS ask if it's a "live" vaccine. As CLLers, we should never get live vaccines, because we might actually get infected.

There is a live flu vaccine - Quadrivalent LAIV - DO NOT CHOOSE THIS OPTION. Don't let them get it confused with other quadrivalent vaccines, either. CDC recommends against other family members of immunocompromised people getting live vaccines, too, due to the small risk of bringing live virus into the home. I believe that the live vaccine is not a shot - it's a nasal spray. The brand names CLLers and those they live with should avoid are:

FluMist Quadrivalent - AVOID

Fluenz Tetra (Europe) -AVOID

If you have egg allergies, ALWAYS let them know! Good clinics do ask. Many, if not most flu vaccines use egg in manufacturing. The 2 egg-free brand names that CDC identifies are:

Flublok Quadrivalent

Flucelvax Quadrivalent (same as Flucelvac Tetra QIVc in UK?)

There is no egg-free High Dose available.

THE U.S. CHOICES:

cdc.gov/flu/professionals/a...

See the section heading, "U.S. Influenza Vaccine Products for the 2020-21 Season"

The CDC don't necessarily have the last word, though - these are recommendations. Off-label vaccinations are possible, but ASK YOUR DOCTOR. If you do things against the CDC recommendations, insurance reimibursement by insurance could be iffy, so ask them to pre-approve insurance if your are below 65 and want High Dose, or if you want a 2nd dose.

Our U.S. choices are:

1. Whatever run of the mill injectable vaccine the clinic has to offer. It could be Trivalent or Quadrivalent, but ask about egg if you are allergic! Me, I don't like to get a shot blindly. Ask what brand it is.

2. Trivalent Adjuvanted - Fluad Trivalent Adjuvanted (egg-based). There is no non-egg trivalent, nor high dose trivalent in the U.S.

3. Quadrivalent non-Adjuvanted (egg-based) -

Afluria Quadrivalent

Fluarix Quadrivalent

FluLaval Quadrivalent

Fluzone Quadrivalent

4. Quadrivalent Adjuvanted (egg-based) -

Fluad Quadrivalent

5. Quadrivalent Cell-based (non-egg-based) -

Flublok Quadrivalent,

6. Quadrivalent Recombinant (non-egg-based) -

Flucelvax Quadrivalent

7. Quadrivalent High Dose egg-based - Fluzone High-Dose Quadrivalent - clinic may require that you be age 65 or greater, but some doctors and clinics will give it on request. There is no non-egg-based High Dose. Is this is the same High-Dose recently approved in the UK? - I also see a trivalent in the UK made by the same company.

8. One of the above, and a 2nd dose 3 weeks or more later (not clearly sanctioned by FDA and CDC, but done in some clinics on request, and some research to support it)

My personal preferences, in order from highest to lowest:

#5, Quadrivalent High Dose. If I can find someone to give me a 2nd dose, I will.

#8. One of the above, and a 2nd dose 3 weeks or more later

#2. Trivalent Adjuvanted

My opinion is that if CLLers cannot get the High Dose, they should try to get a 2nd dose of whatever flu vaccine they can, preferably of the same vaccine they got the 1st time in the season. Me, I prefer quadrivalent over trivalent. Some research seems to show a trivalent adjuvanted beats a quadrivalent non-adjuvanted. But I think it depends on what strains (the valent part) are in your area. My thinking is that non-adjuvant for your strain beats adjuvant for some other strain. But then you have to watch the strains in the wild, and we often don't know till well into the season.

In my U.S. experience, the nurses do not pay much attention to abbreviations like IIV, RIV, LAIV, but do know the difference between HD and SD. I think that depends on recent schooling.

Cost varies a lot, depending on insurance and what back room deal they make with the clinic or pharmacy.

UK choices:

I hesitated to approach this as a foreigner. But I'm so curious about what my friends across the pond deal with, and what other possibilities exist in the world, I wanted to research it. I haven't peeked at Scotland or N. Ireland. I expect that my neighbors in Canada get similar offerings to U.S., but I really should check.

To paraphrase Willy Wonka, "So little to know, and so much extra time available."

The influenza vaccine situation in the UK seems to be changing based on COVID-19, so check the date on any document you find on the web.

UK uses abbreviations we don't use in the US:

LAIV - live, attenuated

aTIV - adjuvanted trivalent

TIV-HD - trivalent High Dose

QIVe - Quadrivalent egg-based

QIVc - Quadrivalent cell-based (egg free)

england.nhs.uk/wp-content/u...

23 Jan 2019

This is a document I found for last year for which I could not find a 2020 equivalent. It's concise.

Last year, they recommended QIVe for 18-64, at risk, and frontline health workers, and aTIV for age 65 and older.

Annex A lists choices that were not approved by NHS England.

They offer TIV-HD (High-dose trivalent) for age 65 and older, but do not recommend it, apparently due to cost.

It lists NHS cost per dose. I don't have access to the NICE BNF, though.

gov.uk/government/case-stud...

16 March 2020

Not clear if they are referring to the Sanofi-Pasteur Trivalent High Dose TIV-HD or that same company's Quadrivalent High Dose that's offered in the U.S.

healthpublications.gov.uk/V...

Version 1. 04.09.2020

This may not quite match the table in the next document, but it's better organized, and pretty, too.

assets.publishing.service.g...

June 2020

The brand names below are from this PDF.

gov.uk/government/news/most...

24 July 2020

assets.publishing.service.g...

5 August 2020

See Appendix B, page 11 for recommended injection based on age, and at risk populations.

1. Whatever run of the mill injectable vaccine the clinic has to offer. It could be Trivalent or Quadrivalent, but ask about egg if you are allergic! Me, I don't like to get an injection blindly. Ask what brand it is!

2. Trivalent - Seqirus Adjuvanted

Trivalent Influenza Vaccine aTIV (egg-based). There is no non-egg trivalent. This is for age 65 and older, or who turn 65 by 31 March 2021. A footnote on the above Letter_annualflu_2020_to_2021_update.pdf (5 Aug 2020) says, "It is recommended that those who become 65 before 31 March 2021 are

offered aTIV ‘off-label’."

3. Trivalent High Dose - TIV HD - This is for age 65 and older. A footnote on the above Oval_albumin_table_2020_to_2021.pdf (June 2020) says, "This vaccine will not be commissioned by NHSE/I and will not be reimbursed by NHSE/I in 2020/21.

"

4. Quadrivalent egg-based -

GSK Fluarix Tetra QIVe

MASTA Quadrivalent Influenza Vaccine QIVe

Sanofi-Pasteur Quadrivalent Influenza Vaccine QIVe

Mylan Quadrivalent Influvac sub-unit Tetra QIVe,

5. Quadrivalent non-egg-based - Seqirus Flucelvax Tetra QIVc

6. One of the above, and a 2nd dose 3 weeks or more later (not clearly sanctioned by NHS)

I like the high dose if you can get it. Other wise a 2nd dose, if you can. If both of those fail, I think the adjuvanted might be best.

I welcome other people to weigh in with corrections and arguments.

=seymour=

Davidcara profile image
Davidcara in reply toSeymourB

Wow, thanks Seymour. I will most probably be going with high dose, or one dose followed by second dose

Jonquiljo profile image
Jonquiljo

In the US (though these formulations should be available elsewhere), the most common "over 65" shots are "Fluzone" - a 4x concentrated quadrivalent shot and an regular dose adjuvanated "Fluad- quadrivalent" (be careful as it comes in both quadrivalent and trivalent forms). Quadrivalent is always better coverage.

Now (at least in the US), various pharmacies and Drs will try to just inject you with any flu shot and send you on your way. You have to make sure they are going to give you the right thing and that they have it in stock!

Fluad and Fluzone (quadrivalent in either form) are the best for over 65's and presumably immune compromised people. I personally have been getting Fluad for the last few years (Trivalent was only available until this year) - and I liked it.

SeymourB profile image
SeymourB in reply toJonquiljo

Jonquiljo -

It's a real pain shopping for vaccines! We have to meet with masked people whose names we don't really know. Some of them even have tattoos! "Hey, man, know where I can score some Fluzone?"

Some people argue that if the clairvoyants of public health are lucky about the 1st 3 variants (valences - I think they didn't like saying "trivariant"), the trivalent may do a little better just because of a slightly higher dose.

But I sorta like the forward looking idea that if my Tiny Tim of an adaptive immune system succeeds in making memory T-cells antibodies, and some of those B-cells grow up to be memory B-cells and plasma B-cells, that 4th variant may also protect a little for a future year when the clairvoyance fades.

=seymour=

NjArtist4321 profile image
NjArtist4321

Don’t forget to eat your vitamin D gummies. Boost your immune system.

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