Hi All,
I am about to have 1st,RTX. infusion in 4 weeks time, Rhemy suggested I ask GP for booster Pneumonia /flu jab due to higher risk of infection.
At my appt. this am at GP's surgery ,there seemed to be a problem and the nurse said she would have to speak to senior nurse and rebook jab. surgery phoned this pm without a difinitive answer ,saying need more research. has anyone had this problem or never been asked to have booster?
thank you.
The GP nurse shouldn’t be denying these if you’ve been told by the rheumatology department to have them four weeks before your Rtx. Can you ask the GP and say it’s important to do those ASAP as you need to do these in advance of Rtx? My flu and pneumonia were done after and I was told if I had them AFTER Rtx I had to leave two months before I had them. I had to do it this way as I’d never had them before and my nurse said at my infusion you must have them this year. Good luck.
Thank you Neon Kittie17 for reply. They know the importance of said jabs and timing ,its that they can't find guidence in " Green book"if its 5yrs or 10yrs for booster. my 1st Pneumonia jab was 7yrs ago this Sept. they are doing more research and phoning me on monday.hopefully it will be resolved. I am hoping against hope I will have a good result with RTX. been on a long journey with 4 anti-tnf's with no positive outcome!!!! keeping everythingX
I hope you’re soon in for your flu/pneumonia jabs and then on to your Rtx after a month. 🙏🏻💗x
Thank you so much.
I believe there is some concern about a potential flu epidemic this winter which is why there are plans to give the flu jab and the covid booster, at the same time. We are more at risk of serious infection on RTX so I expect that's why your consultant has suggested it this year. May I suggest you phone the consultant's secretary and ask if the consultant could please write to your GP to request you get the jab pronto! I had trouble trying to get a cholesterol test done by my surgery; the consultant told me to ask for it but the surgery would not action it until they got it in writing from the consultant. I think the problem could be internal politics in the NHS and who ends up paying for it!!
Thank you LolabridgeRheumy did ask g p in a letter for pneumonia jab
It's a question of 5/10yrs for booster timing they seem to be questioning.
I am happy to pay for it.
Strange in some practices they let you have more tests. I said last time at the practice nurse for my rheumy bloods, I hadn’t had my cholesterol done for a while or blood sugars and she just looked on the computer and said .. I can’t see them either for some time so I’ll do them now. Didn’t have to ask the GP or anything. Think you’re right though about who’s paying for it!
Boosters are only recommended in very limited circumstances, so that’s probably what’s throwing them a bit. For most people, even people with quite serious underlying health issues, it’s a one off. Where boosters are required on an ongoing basis, the advice is to give them every 5 years. If they can’t find it themselves by Monday, tell them to look at page 7, chapter 25 of the green book, although the paragraph doesn’t specifically indicate that rheum patients require the booster, so they may well need it in writing from the consultant that he wants you to have it.
Thanks Charlie -G.I think you have hit the nail on the head!and they have looked at "green book"and are not certain if it's 5/10 yrs. as it's not specific and need more info. before
they are happy to give jab.
Rheumy did ask in a letter updating gp on my new treatment plan for pneumonia jab.
Will wait and see.
The green book is specific, though! It very clearly says on that page;
‘PPV23
Antibody levels are likely to decline rapidly in individuals with no spleen, splenic dysfunction or chronic renal disease (Giebink et al., 1981; Rytel et al., 1986) and therefore re-immunisation with PPV23 is recommended every five years in these groups. Revaccination is well tolerated (Jackson et al., 1999). Testing of antibody levels prior to vaccination is not required. Although there is evidence of a decline in protection with time (Shapiro et al., 1991), there are no studies showing additional protection from boosting individuals with other indications, including age, and therefore routine revaccination is not currently recommended.’
The NICE pneumococcal guidance page also says exactly the same thing, just a bit more briefly. Those are the only groups of people for whom booster vaccination is officially recommended, though, which is why I said that they may say they need the request in writing from the consultant to action it.
I always find it a bit worrying that we can dig this stuff up in 5 minutes flat, but the pros seem to need several days, and even then might not find the right answer 👀🤔
It’s a beggar when we have to tell the practice staff/docs where to look, etc! I’m used to being very proactive so regularly do things like this .. politely of course!
Yes , I am also very proactive, do lots of researchand have to navigate my way around health professionals and it's soo tiring😣
Also between GP,s and Rheumy dept.
Hey Ho
It can be a very time consuming thing .. research. I seem to have done nothing but that lately.
I’ve learnt it’s not what you say, necessarily, so much as how you say it 🙈 If you can make them think something was their suggestion, or that you were trying to save them time, it usually goes down ok. But it does make me wonder - took me 5 minutes to find the answer in the official resource, and I was told in school that I’m useless at science. My ability to read was always above average, though 😉
I send the rheumy letters. Apparently she likes them 😆 as I confirm what we’ve said on the phone and what they are going to do! Just gently remind them. It happens eventually but often takes a big longer at the moment and last year.
My point is there’s a lot of concern about what infections and epidemics may be coming and the consultant wants you to have it this year, even if it’s only seven years from the last, as a very sensible precaution. We are in totally new territory and old rules ( is it 5 or is it 10) may not be appropriate now.
I had a pneumonia jab in the 1990s as I was suffering from brittle asthma at the time. In December 2019 the practice nurse said I didn’t need a booster as it was a once in a lifetime injection but later that month I saw the rheumatologist, and he asked if I’d ever had one. I said yes but he said I needed another and wrote to the GP and the practice nurse gave it to me the next time I went for my methotrexate monitoring bloods. No problems at all.
Clemmie
I think Charlie _G is right ,it's thrown them a bit my request for booster. Jab. Maybe nobody has asked before.
Hi. No didn't need any boosters before I had Retux. Only thing I had done earlier was a shingles jab a year before required
Had a similar ping pong between rheumatology nurse and gp nurse. They never managed to talk to each other. In the end I was asked to decide whether to have the jab or not without knowing the pros and cons. This was poor practice. I would advise you to get the rheumatology nurse to write a letter to your gp to ask for you to have a pneumonia jab. In the end I had it, the jab is not a live vaccine which means it should be safe. Sorry this is happening to you. Take care
thank you Greencat96, I think if I could have the Pn.jab it might help my chances of not getting an infection or not so severe. otherwise I think it will be another winter of semi-sheilding for me! Take care yourself.🙏
I was told at my first rheumatology appointment to have the pneumonia jab so I asked my GP for it, she said she'd look into it and rang me the next day to say that "the book" said that I wasn't eligible.Six months later, at the next rheumy appointment (with a cough caused by a nasty cold) I was told categorically that I had to have it. Told GP who agreed to give it to me and then discovered that they hadn't got any and wouldn't do so for several months. Asked the pharmacy (where I had the flu jab) same story.
Kept asking surgery and finally got it several months later - pharmacy rang me the following week to offer me one....
I dread to think what would happen if the rheumy recommended a booster! 😳
My husband & I were offered pn.jab on our return to Uk in 2014 after living in France for nearly ten yrs. when we registered with our new UK practice.We were then aged 69yrs and 64yrs and so were eligable. and was offered it with our flu jab .
We said yes please ,any help to fight infection greatly welcomed!
7yrs on ,little did I realise my RA journey would be so toutuous and I now need all the help I can get..
😷
I had a second jab after I had an antibody test ordered by my lung consultant and it showed my antibodies were very low
I asked my GP for a booster jab last summer (2020). He said I couldn’t have one as I’d had the jab in Year 2000. Having lived in the US for 25 years I told him that the US recommended a booster if you’d gone longer than 10 years between jabs. Since mine was 20 years since so he reluctantly agreed to give me it. (I asked very nicely though).
Anything to help to fight the after effects that Covid could pass on!
Hi Tempo 57I am getting many differing acounts of peoples experience re Pn.jabs and boosters, some get it without question and some refused untill they persue it with their Rheumy team.
Its a mine field out there!!!
Thanks for reply.
Painterlylady.
Hi Painterlylady,
I believe it depends on each GP ‘s practice. Recently I was told by my GP that she would not recommend I see a specialist for a CT Scan regarding an ongoing colon pain I’d been suffering for months during Covid. She said she didn’t think the problem warranted a scan!
I told her I’d go privately then as I was having so much pain and I want to know what’s going on inside. She told me to call the Spire hospital and arrange an appointment with a consultant of my choice and that she’d write to the Spire confirming that I required a private appointment.
I did so and saw him the following week. Consultant said I not only required a CT Scan urgently, but a Colonoscopy as well. All this is being done within 3 weeks of seeing him.
I could have just been left in pain if I hadn’t pushed for help. I have little faith in GP’s since Covid struck.
Best wishes and I hope you get your jab arranged soon. Ask for it to be done privately at the surgery or chemist if not…..it cannot cost very much, possibly the price of a flu jab.
T57
Best wishes to you T57 and I hope you find peace of mind at the Spire.😊
When I had a GP telephone review, I asked the question myself - as I have had pneumonia 3 times now, the last time they said they nearly couldn't save me, and my last pneumonia jab was ten years ago. I had researched that there is divided opinion about boosters, but my doctor was open-minded, said he'd read up on it. The upshot was that I had a message from the surgery to make an appt. for the booster - well, not a booster, it was another full jab.
It’s doubtful you’d get an influenza vaccination now…this year’s vaccine won’t be ready & last years has probably run out.If you have already had the one pneumo jab….most only need it once…. unless you are over65… then you might need another one.I’m well past 65 & on Rtx & I have never had one.
Another problem is if you are just starting Rtx it is time limited for vaccinations.
The person to speak to is your rheumy nurse…GP nurses usually know nothing about Rtx…& Rheumatologists heads are up in the air about timings.
You will need to wait until 12 weeks post your Rtx infusion…& that will just be in time for this years flu jab….so don’t worry ….start your infusion & check with your rheumy nurse when you should get the flu jab.
Thank you Aged crone.Just had a phone call from GP surgery p
ractice nurse 5mins ago, saying.... I don't come under the criteria for pneumonia booster .
For patients with NO slpee n and renal it's every 5. years booster.
Nurse says I need a letter from Rheumatologist to get one.
If request ed.
I won,t be getting flu jab as it's due in Sept.
or Covid jab booster should there be one.
My rheumy nurse did ask in a letter to my GP.
when outlining my RTx. treatment that it would be good if I have a pneumonia booster .
I am too tired to fight for one,I give up!
If I get pneumonia and die for want of a jab,then so be it.
I am seventy six years old and had RA since my early 20s . Hoping RTX will give me a little life back .tried four biologics to no avail ,now on 7weeks high dose of Pred . to bring inflammation down before infusion.
RTX infusion is on August 5th 1st one and 2nd Aug.19th.
Sorry this is such a rambling answer ,for carried away!
You will be able to get your influenza vaccination in November then.I am older than you & I had to arrange my dates myself last year as that was how my Rtx dates fitted.With RA age is just a number…a lot of people a lot younger than us have to watch their dates as well.
I made sure I got my vaccination on time by going into Boots as soon as the vaccination start dates were announced and booking it personally, and explaining why I couldn’t have it any sooner.
The pharmacist understands Rtx & it all went well.
So just plod on& you will get everything sorted out.
Thank you so much.
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.
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