Hi due to have my pneumonia vacination next week it's been 8 years since my last vaccination back in 2013 and they only gave me the adult one pneumovax 23 ( pnn23) then
I phoned up my GPs to book this and Spoke to the practice nurse explained it's been 8 years since my last one and I wanted the prevnar13 ( pev13) first , this is the one usually given to infants , I explained we usually get a better response to this one and usually about 2 months after we are given the adult one (ppv23) as recommended in the green book official uk source for vaccination advice ,, this is recommended for CLL patients , with the adult vacination ( ppv23) we don't always got a great response with the polysaccharide vaccine we get a better response from the prevnar13
The nurse who had experience in transplant patients said I maybe correct but needed to check with the GP
She phoned up today and said the GP spoke to my team and they told him it needs to be the adult vaccine and its booked for next week , I told the nurse I'm sure that's it not correct ( lol little old me ) questioning the team ,,..I've been to a few meeting over the years cll society and I know that's the advice I was given by a couple of speakers ( cll experts I have to add ) , same as the green paper recommended
I know I had the adult vaccination in 2013 but I'm pretty sure that would not make a difference now , me receiving the prevnar13 first and the adult after , 8 years on , they did not give a reason and that may not be the reason , I phoned the consultants secretary saying the consultant may have given them incorrect advice , she is getting back to me ,,,lol hope I'm not ending up with egg on my face
Stewie
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stewie
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Had my jab in November after the first 5 years ago after my consultant told my GP but consultant didn’t specify which type. Pneumovax 23 given with the message on my file to have every 5 years.
Not really bothered which type but that’s me.
Beware that your pneumonia jab is not too close to your COVID19 jab. 28 days I think but may be wrong.
Hi Devonrr Thanks for your reply got my 2 nd vaccination covid 1st April , this one is 2 nd march just with in the time frame
I now what you mean , you go with they say and just carry on , . in fact I got told off a lot early on was only going to annual appointments instead of 3 or 6 months I was awful a lot better now lol ,
I knew 2 people recently who died of pneumonia infections in a short space of time no specific immunological issues
Stewie, it’s good that you are questioning this. It’s very important to get the right pneumonia jabs in the right order and your team seem to have got this wrong.
According to everything I have read, Prevnar13 should be given first (also known as PCV13 or Kids’ vaccine), then at least 2 months later the Pneumovax 23 (PPV23 or adult version).
For the UK, the recommendation for Pneumonia vaccinations is in “The Green Book”. Go to Chapter 25, page 8, third paragraph.
See the section starting: "Children aged 10 years onwards and adults diagnosed with other at-risk conditions." Individuals diagnosed (or first presenting as) from ten years of age should receive a single dose of PPV23, regardless of prior PCV vaccination. No additional PPV23 is recommended when they reach 65 years of age.
Older children and adults who are severely immunocompromised* should be offered a single dose of PCV13 followed by PPV23 at least two months later (irrespective of their previous pneumococcal vaccinations). If PPV23 has already been administered, then wait at least six months after the PPV23 dose to give PCV13 in order to reduce the theoretical risk of pneumococcal serotype-specific hypo-responsiveness."
"(*including bone marrow transplant patients, patients with acute and chronic leukaemia, multiple myeloma or genetic disorders affecting the immune system.” (Relevant bits put in bold - Ed)"
Another UK reference re pneumococcal vaccines is: nhs.uk/conditions/vaccinati... …anyone with leukaemia; multiple myeloma; genetic disorders affecting the immune system or after a bone marrow transplant) usually have a single dose of PCV followed by PPV.”
All CLL specialists that I know of, recommend the Prevnar (PCV13) before the Pneumovax (PSV23). Eg Prof Hillmen, Prof Chris Fegan, Dr Claire Dearden. In fact Dr Dearden has said the Prevnar13 is the really important one, and that the Pneumovax is hardly worth getting in comparison. I don’t have references for that, but here’s words from Dr Rick Furman – renowned CLL expert in USA.
“….Prevnar (PCV13) is more effective than pneumovax (PPSV23) and should therefore be given first. The concern is that if you have already received pneumovax and then receive Prevnar, you may blunt your immune response generation to the Prevnar by clearing the vaccine proteins with the pneumovax vaccine.” - Dr Rick Furman (in a reply to Dan on the CLL/SLL Groups IO forum on 10th July 2018).
I hope your team will look up the relevant info on this. As you know, pneumonia is one of the biggest killers of CLL patients and we need to get the best protection possible from our jabs.
Hi Paula , hope your well + family , yes thats what I thought , the other day a member of staff doing the covid response trials mentioned it , just surprised why a consultant would not advise this ,,, strange un less I'm missing something
Stevie, follow what PaulaS says. Some Doctors, specially some GP's simply do not keep up to date with information and dig their heels in if a patient tries to gently urge them to look at new guidelines. Safety in the known I guess. I printed off the new guidelines and showed them but don't think these were read. Nurse likewise said she was not licensed to give the baby shot to adults, so I could not get it. And GP kept repeating this. Secretaries and Practice Manager said that they had to follow what my GP said.
Then my GP was away from surgery for a while and the lead Doctor in Surgery instructed I should have the Prevnar 13 without my approaching him. I guess he was overseeing my notes and God knows I'd spoken to Practice Manager and secretaries about this matter many times so left a trail behind me. Think they all grind their teeth when see me approaching I feel like a deformed worm when I do face them with unusual requests. Courage and persistance in matters you consider important is what I keep telling myself.
Good luck stevie, read and print out Paula's references and have them at hand next time you approach the surgery. You'll probably be luckier than I was. Yes, I got there in the end but it literally took months. I loose heart sometimes. Don't you do that.
I have never heard of a nurses' license being restricted to pediatric vs. regular care, let alone a common injection type! Advanced coursework to specialize in pediatrics, yes. This likely would be a lie if said in the US, IDK about the UK but I'm skeptical.
I've had nurses argue with me about the "correct" way to do a SC injection on me & say "our policy says we must do it this way" when they were, uhhh, let's say misinformed. Some people are like that, and I don't use those docs or nurses anymore.
Stewie, it was only a few years ago that the new recommendations involving Prevnar were accepted in the UK (though they came earlier in the US). The information has taken a long time to trickle through the British system so I suspect it is your team who are missing something, not you.
I suppose it's just possible that the recommendations have changed again in the last year or so, but I haven't heard anything about that. I'd want to see evidence of that being the case before accepting another Pneumovax jab without ever having had Prevnar first.
As others have said, hold your ground and don't lose heart. You're the one with the most skin in the game - not your doctors..
Hi Paula , I will , I always mention I have a medical background lol don't mention what it was thou and how limited it is , sometime I remind myself of Frank Abagnale ( leonardo ) in the film catch me if you can ... Do you concur lol
Show them this link from 2018, they're not CLL specialists & probably don't realize our recommendations have changed. It's a small study, but likely there's no harm in us doing Prevnar 13 before the Prevnar 23 series, to get our immune system stimulated into producing antibodies:
Thanks for reminding us of this...I need repeat jabs, it's been 6 years since my shot & we are recommended for boosters after 5. I think I will redo the whole thing starting with Prevnar 13.
This second link is the CLL Society vaccine recommendations for us, maybe print or email a copy for your chart:
So between the NHS, Green Book, CLL society, and immunize.org recommendations, you likely can make your case for the change.
And I found a link from American Family Physician from 2020, if they are still unconvinced. It seems there has been some discussion the past few years of "dropping" the P13 recommendation, but the P13 followed by P23 still holds.
Depends on your age. Are you 60 and older? Prevnar 13 then a year later Neumovax 23. I think there is a booster 5 years later.
Due to insurance issues I had to get Neumovax 23 first cuz my doctor wanted me to have some protection. 6 years later I was able to get Prevnar 13...so I got Prevnar 13 this past Sept and will get Neumovax 23 in August. Had to start all over. 💕
Hi GMa 27 , I'm a young looking 51 year old 🤓Lol , but I don't think it depends on our age thou I'm sure it is recommended for all adults Cll that way round
Stewie, I think the age thing may be more of an issue in the States, where GMa27 lives. I'm pretty sure that in the UK, you don't have to wait till you're 65 to have the Prevnar jab.
And in the US, it IS recommended on the CDC website for people like us ....but the data is somewhat new & not all US clinicians may be aware, especially with what's happened last year. These recommendations were updated late Nov 2019. I would totally understand why my providers may not have read it yet. It's the last sentence of the introduction that applies to us, even though the title reflects age 65 & over. I think the confusion results from the link specific for us, is dated 2012 & there were some articles published afterwards questioning this. This single line item appears to be the only "recent" indication that the 2012 recommendation still stands, the 2012 statement itself hasn't been updated. Yet.
As you know I had FCR in 2014/2015 on the FLAIR trial (Whereas you are in the Ibrutinib arm I think)
I can only say which I've had:
- Prevnar PCV13 in 2018
- Pnemovax II PPV23 in 2019 (Had before treatment in 2013)
I understand Pnemovax II PPV23 is repeated every five years.
Remember at the moment many people are under a great deal of stress with COVID and not thinking straight, so be patient with the folks on the other end of the phone who may well be struggling for all sorts of reasons.
I am definitely loosing my marbles . . . (so apologies if I've made any dumb errors)
I read Paula's write up on this post to remind myself (and note all chronic Leukaemia patients): Silly question (just trying to guess what the clinicians might be thinking) - how would you rate your immune status ? (how normal are your Ig values)
Think I would politely stand back and do nothing until they give you a good explanation. I assume here you are in a low risk area at the moment. Best get the consultant to lead this even if it takes some time/effort then?
This reminds me of my advice to all CLLers — that the first thing to attempt with our primary care, is to get them to comprehend that..CLL <=> immune compromise
To get our records flagged as an immune compromised patient
That this helps see them provide us with a treatment approach appropriate for immune compromised patients.. and also helps reception and all staff to escalate when we have problems.. as our infections require more urgent care.
I think you are correct I went through exact same process and haematologist wrote to GP to recommend prevnar jab . I think this is now in the NICE guidelines. Hope it goes well
Hi StewieNot that this helps much but shortly after I was diagnosed last Nov (age 67 stage 4 CLL UK}) I was told to contact my GP and arrange a pneumonia jab. I too had read the literature about the 2 jabs given hopefully 3 months apart. GP told me they only give pneumovax and never have the child version in stock and it would be weeks to order it in! Checked with my consultant who basically said if that's what the GP says then that's what you get. So had the pneumovax and told to have another in 5 years. Easy jab no real reaction just sore arm for 3 days Not a helpful reply but at least your experience was same as mine. Stay safe and lots of luck. Patrick
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