RSV Vaccine

[Pocketdog]

I am due to have the RSV vaccine tomorrow at my GP surgery - at my insistence as my GP says he knows nothing about it. I am a little wary as this is a new vaccine and with CLL we are not supposed to have live vaccines. I am trying to research as much as I can but as this is a new area am wondering if others with CLL have any guidance on this. I am trying to find out what vaccines to have - so far have come up with Prevnar 13 and PPV23 2 months later. Also Arexvy and Abrysvo (from ChatGPT). My husband - not suffering with CLL recently had the Abrysvo vaccine. I will try and get in touch with my clinical nurse support team to find out what vaccines they recommend but would like your thoughts/experience on this. Many Thanks

[AussieNeil Partner Administrator]

The RSV vaccine is non-live and is included in our recommended vaccinations list per this pinned posthealthunlocked.com/cllsuppo...

Here are our previous posts on RSV

healthunlocked.com/cllsuppo...

Neil

[Pocketdog in reply to AussieNeil]

Thank You. Apologies for not searching for previous posts but am in a bit of a rush as am due for vaccination tomorrow. Will check them out now. Thanks for your response

[BigfootT in reply to Pocketdog]

I got it last month. No issues at all.

[Pocketdog in reply to BigfootT]

Thanks - which vaccine did you have?

[BigfootT in reply to Pocketdog]

Here's what is says. Not sure if there was a brand name.

RSV, bivalent, protein subunit RSVpreF, diluent reconstituted, 0.5 mL, PF

[annmcgowan in reply to AussieNeil]

Hi I have read RSV is not live but you would need to check. The immunosuppressed only get it right now if they are aged 75-79. My GO won’t provide one as I am 72. Apparently this drug has not been trialed on us in the UK.

Ann

[Shooey in reply to annmcgowan]

Hi Ann

Below is the response I’ve received from immunology dept, so they haven’t even trialed it on the Immuno compromised!! I guess what it’s saying is there was little point as we probably wouldn’t mount a response?

………………………………………………………………………………………………………………………………………..

“There are 2 RSV vaccines: Abrysvo and Arexvy licenced for adults over 60 years of age. Both are recombinant, not live.

The trials did not include immunocompromised/immunosuppressed individuals.

As there is little evidence base for RSV vaccination in immune deficient patients and the JCVI have not made any specific recommendations regarding immune deficient patients we have not been routinely advising our patients to get the vaccine.

The duration of protection is unknown, but said to be at least 2 years. There aren't any data to support revaccination at this stage.

I think there are a lot of unknowns, including if and when a booster might be needed. If it is available privately it may boost your protection against RSV, but you could wait for more information to become available.”

[annmcgowan in reply to Shooey]

Hi Shooey that’s why my GP won’t provided it no evidence base. We don’t respond as well as others to any vaccines yet they still trial and provide them to us don’t understand why RSV is any different and shouldn’t be trialed. I believe it is available for people like us in the USA? Don’t know if they have been trialed there or not? If they have there must be evidence base in the USA which might be transferable to the UK?

Ann

[SofiaDeo in reply to annmcgowan]

Many vaccines also stimulate T-cells, which our targeted CLL treatments generally don't affect. Unless you have bloodwork documenting you are also low in T cells, a number of practitioners will recommend getting a vaccine. Unless you are someone who reacts badly to vaccines in general, even a small benefit may prevent or minimize a severe infection.

[annmcgowan in reply to SofiaDeo]

Hi thanks for your reply. I have no problem with vaccines so would be happy to have it. Unfortunately here in the UK we can’t get it under 75 or over 80 years of age. I am 72 so don’t fit the criteria. They say it is because it hasn’t been trialed here in the uk on the immunosuppressed??

Ann

[SofiaDeo in reply to annmcgowan]

Hmmm, well, if your health system says they won't without a trial, then they won't. IDK if you are in a position to go elsewhere to obtain one. I'm not sure if trials were done on immune compromised in the US. I just know it's available for people who want one, here.

[PaulaS Volunteer]

I had it a few weeks ago. As others have said, it's not live. I had zero side effects, which is unusual for me and vaccines. I am 75 and live in Sheffield UK.

As you're only 70, your lucky that your GP is letting you have it. I was told that the age restriction in UK is not for safety reasons, and other age ranges should be offered it eventually.

Best wishes, Paula

[Pocketdog in reply to PaulaS]

Thanks Paula. It was the CLL clinical support team that suggested I have it but in my stupidity I forgot to ask which vaccine. Which one did you have?

[PaulaS Volunteer in reply to Pocketdog]

I had RSV a few weeks ago. In the past I've had Prevnar then Pneumovax, meningitis, several COVId and flu jabs. Maybe more, can't remember. Am on holiday in Lake District right now, sitting by Bassenthwaite lake. 😊

[PaulaS Volunteer in reply to Pocketdog]

Pocket dog. I just remembered, I also had 2 Shingrex jabs (non live version of shingles vaccine), and HIB with meningococcal. I had flu type symptoms after many of those jabs, but nothing with the RSV. But we're all different in our responses...

Might be worth mentioning all of these vaccines to your GP tomorrow, especially the Shingrex. 🙂

[Pocketdog in reply to PaulaS]

Had the 2 Shingrix vaccinations earlier this year - did have the flu like syptoms and fatigue after the 2nd one. Haven't had the HIB with meningococcal....... mmm not much chance of talking to the GP - my appointment's with the nurse....... enjoy your holiday.

[PaulaS Volunteer in reply to Pocketdog]

Thanks Pocketdog. I hope your time with the nurse goes well tomorrow. Nurses can sometimes be helpful in advocating for vaccinations. (Not always though).

[RosettaClapp in reply to PaulaS]

I've found the nurses ill informed sadly and not prepared to look either.. The green book has all reccomendations so it might be worth taking a copy of the relevant page just in case

[Vlaminck]

Haven't yet read Neil's take on the RSV, but it suddenly appeared out of nowhere amidst all the vaccine Covid news. Never heard of RSV before Covid and have somewhat assumed this is more Big Pharma driven than health driven. I've had all the other recommended vaccines but not this. Has anyone had RSV?

[AussieNeil Partner Administrator in reply to Vlaminck]

From April 2023, Dr Eric Topol wrote with respect to RSV,

"—For older adults in the United States, there are about 100,000 hospitalizations and 8,000 deaths associated with RSV. It rivals seasonal influenza for morbidity and mortality in older adults.

—The pathogen was first identified in 1956 in Baltimore but we have not had a successful vaccine until now."

erictopol.substack.com/p/wh...

Dr Topol closes with;

N.B. I have no relationship with J&J, GSK, Pfizer, Moderna or any vaccine manufacturer mentioned in this piece (and beyond that in any previous writing).

Neil

[Vlaminck in reply to AussieNeil]

Thanks, Neil. Still, never heard of it before the last couple of years -- why not? Know no one who has had it -- maybe someone on here? Would like to hear.

[AussieNeil Partner Administrator in reply to Vlaminck]

Prior to the availability of RSV vaccinations I guess there wasn't much interest in tracking RSV, because the only preventative options were risk reduction and avoidance.

While it will be interesting to hear from members who know they have had an RSV infection, keep in mind that unless people have their respiratory infection identified, an RSV infection could well be thought to be the flu or a severe cold.

You can subscribe to 'Weather reports' by Andrea Tamayo and Katelyn Jetelina (Your Local Epidemiologist), where they track trends in the flu, COVID-19 and RSV in the USA. Katelyn Jetelina has also published "A guide to fall 2024 vaccines" yourlocalepidemiologist.sub... which provides a summary of the pros and cons for the three RSV vaccines available in the USA.

Neil

[Vlaminck in reply to AussieNeil]

Thanks for that link.

[Dlangan in reply to Vlaminck]

I almost lost my 10 month old grandson to RSV in 2022. He was medivaced to a major childrens's hospital where he spent six nights. It was a nightmare. This was a major news event in 2022, as hospitals were overflowing with desparately sick children. Of course I got the RSV vax. I'm 62, no problems with it. Adults die from this too, and I would never have survived if I was as sick as he was.

[Vlaminck in reply to Dlangan]

So glad grandson is okay! May I ask who/how he was diagnosed as RSV (rather than, say, some other virus)? Was there a test? Or was there an assumption from his symptoms? Just trying to pin down what I can about this newly-discussed virus.

[Dlangan in reply to Vlaminck]

A swab, at some point. I get swabbed for flu, Covid, and RSV simultaneously if I have respiratory symptoms.

[Vlaminck in reply to Dlangan]

Interesting. Didn't know there was a swab type test for flu OR for RSV. Only Covid that I knew of. Is there a swab test ala Covid for these others?

[kimiD in reply to Vlaminck]

I had RSV early this year and it was a miserable experience. I did not even know my body was capable of producing that much phlegm. It lasted 3 full weeks but I did not feel back to "normal" for a full 6 weeks, then developed pneumonia after that and was sick for another 3 weeks. It was a miserable winter/spring. I will most likely get the RSV vaccine at my appointment next month. This is not something you want to deal with, trust me.

[Vlaminck in reply to kimiD]

So sorry you went through such an awful illness. May I ask who/how were you diagnosed as having RSV (rather than, say, some other virus)? Was there a test? Or was there an assumption from your symptoms? Just trying to pin down what I can about this newly-discussed virus.

[kimiD in reply to Vlaminck]

There is a combination flu, covid, RSV swab test. My doctor ordered that test and a chest xray each time I was ill. She thought I'd be positive for flu since she had not seen many cases of RSV in adults during that time but it came back the next day and was positive for RSV and my chest xray was negative. The second time I was tested I was negative for flu, covid, and RSV but my chest xray indicated pneumonia. I was so sick for so long that it's all kind of a blur now. I can say that I have never coughed so much and so hard as during the RSV.

[Vlaminck in reply to kimiD]

Thank you. I just responded to someone else who said she too got swabbed for all three. This is the first I have ever heard that there is a swab test for flu or RSV.

[AussieNeil Partner Administrator in reply to Vlaminck]

My pathology lab provides a self-collect a PCR swab for the detection of respiratory pathogens influenza A & B, RSV, metapneumovirus, parainfluenza 1, 2 & 3, adenovirus, rhinovirus, Mycoplasma and Bordetella pertussis and COVID-19.

Neil

[Vlaminck in reply to AussieNeil]

Wow, super swab! I assume you just get positive or negative or do you get results on each one (to know whether you have, say, flu versus RSV)?

[AussieNeil Partner Administrator in reply to Vlaminck]

I keep on hand a current request (they are only valid for 6 months) for just the flu, COVID or RSV. Thankfully, I haven't yet needed to ask for a report, so I don't know what is reported in addition to positive or negative for the respective pathogens. Seems my FFP2 respirator is proving effective at keeping me free from respiratory infections.

[turbomotive60]

I had the RSV yesterday and alls well, its not a Live Virus..

[Pocketdog in reply to turbomotive60]

Which vaccine did you have?

[Mijoed]

I’m 64 and my haematologist recently said that I should consider getting it. Obviously it won’t be under the NHS unless they change their opinion about not vaccinating immunocompromised people

[Pocketdog in reply to Mijoed]

Have just spoken to Clinical Support Nurse. He says it's a fairly new vaccine and I should be guided by what the GP can offer. I pushed my GP surgery for it - I'm 70 - and emailed them to say the haematology team agreed I should have it. The receptionist got back to me with an appointment within a few minutes. It's good to put things in black and white rather than a phone call. There's always a trail then.

[terryo55terry]

I had the RSV vaccine last week and no side effects whatsoever!

[Pocketdog in reply to terryo55terry]

Which vaccine did you have?

[terryo55terry in reply to Pocketdog]

They didnt specify the vaccine but it was the standard RSV used throughoput the UK, hope this helps.

[Pocketdog in reply to terryo55terry]

OK Thanks - it looks like Prevnar 13 for the first jab and Pneumovax a couple of months later. The newer ones are Arexvy and Abrysvo - which my husband (who doesn't haveCLL) had a few weeks ago.

[Vlaminck in reply to Pocketdog]

Interesting. I've had Prevar and Pneumovax years back -- do you think that might include RSV?

[Skyshark in reply to Vlaminck]

No, the RSV vaccines are quite new.

Arexvy was given European marketing authorisation in June 2023 and Abrysvo in August 2023.

FDA approval of Arexvy was 2023 May 3rd and Abrysvo May 31st.

[Vlaminck in reply to Skyshark]

Have you heard of swab tests for flu or RSV? Two people on here said their doc swabs for all three at once (Covid being the other).

[PaulaS Volunteer in reply to Pocketdog]

Pocketdog, I had never heard of Arexvy and Abrysvo, but just Googled them and now realise they are 2 varieties of RSV vaccine. Arexvy has an adjuvant to help efficiency but Abrysvo covers 2 different strains of RSV! Could be that one is more suitable for immuno- compromised people?

I never thought to ask what sort I was getting, didn't realise there were different varieties.

[kablea]

I had the RSV and no effects, that is, until 6 days later! The arm suddenly went inflamed and swollen and my BP rose. However, back to normal the next day.

[Phil4-13 in reply to kablea]

kablea, that's the type of reaction I have to immunization shots, sometimes with awful flu symptoms. My doctors and I "weigh" which one to take and I simply prepare to maybe need rest for a week. The pneumonia and flu shots are the most important and I get them with no hesitation.😊Sandra

[TruthJunkie]

Yes, Pocketdog, it is recommended in USA. I had vaccination last Autumn. Also had the 2 Pneumonia vaccines. No worries.

[Adlucy]

I had it a month ago with no effects at all. You then have to wait a month before you can have the Covid and flu vaccines, which I'm having in a week or so's time. There are age restrictions. I think it's only being given to those between 75 and 79 currently. My daughter caught RSV from her two year old daughter last year enquired about it and was told she couldn't have it because of current government policy.

[Pocketdog]

Thanks for that Adlucy - have got my Covid and flu vaccinations booked for 2 weeks time so will check that out this afternoon.

[QueenofSiam]

My doctors surgery have told me that they are only currently giving this to 75-79 year olds, not immuno-compromised patients and I am not old enough to get it.

[New-bee-cell]

I had Arexvy (the RSV vaccine available here in my part of Canada) a few months ago. Had my usual post-vaccine fatigue etc. for a day or two, but totally worth the protection from my point of view.

[Boccejoe]

I have CLL and currently on Brukinsa and my oncologist highly recommended getting the RSV vaccine.