Flu jab

[Evie3]

morning. I am on Rituximab. I took a blood test to test if the Covid injections worked for me and it showed a negligible immunity. I just wondered if anyone on Ritux had tested whether the flu jab had given any immunity. I am thinking not. I do have all these vaccines anyway.

[AgedCrone]

I’m on Rtx…had my last infusion Jan 2022….4thCovid vax Jun 2022…..I was tested & they showed no antibodies …but I still I had the Flu vaccination in September….& for the last week I have been wondering if I’m having a delayed reaction to that flu jab.? I’ve had headache, tired, dizzy ,& nauseous …all stats fine,LFT’s Negative.

I did have a similar reaction to the flu jab pre covid…..but back then I also had a bad rash which is missing this time…..just waiting to see how things go….but Covid jab no 5 is on the back burner for now. How long ago did you have the flu jab?

[Evie3 in reply to AgedCrone]

Flu jab end of September. Like u Covid 5 on back burner. Sorry u r feeling rough. Makes u wonder why we bother. My infusion was Jan. booked in for mid November. Luckily RA not tooo bad (touch wood).

Saw on TV this week that there is an antiviral injection (lasts 6 months) available to severely immunosuppressed. Not yet available on NHS. Cost £1000 per inj.

[Neonkittie17 in reply to Evie3]

Evusheld and its controversy. 😑 There has been a vigil at Westminster from the Evusheld4theUK FB group involving MP amd medical consultant support yesterday and current marketing campaigns on the “forgotten 500K” and there is a website too. Evusheld was approved as safe for use here in March but the government won’t allow it as they say it hasn’t been proved to be effective in all variants of Omicron.

Too big to debate here but look at the FB group whose admins and members are campaigning for it to be available on the NHS. NICE are investigating it but no feedback/results expected back until c.April 2023. (Evusheld is currently being used in 32 countries worldwide.) Have a look at their FB if you do FB, or the website. The Evusheld FB/patient group is very professional. (No mean people .. and all on the same side there/supportive.) Yes, a week ago AZ said they’d be making Evusheld available in the UK to buy but as yet we don’t know how and yes the cost is around £1000 and then add in consultant and pathology testing fees, etc., twice a year. x

[Evie3 in reply to Neonkittie17]

thankyou…..yes just in process of joining. Just thankful for this group….finding out info that GP’s etc should be telling us!

I had Covid in July as went on holiday to Wales. Wasnt ‘allowed’ antivirals as promised…but survived. I have asthma too. Just been abroad to Spain….wore my mask all the way there. I have decided at 70 I need to enjoy my life with my husband as so many of our friends are no longer here. It would be wonderful if I could do this covered by Evusheld.

[Neonkittie17 in reply to Evie3]

Agree it would be so reassuring and change our lives. Back to where they should be. 💗

[AgedCrone in reply to Evie3]

That injection was probably Evusheld made by Astra Zeneca…..whose Covid vaccine made me very poorly…but of course that is no reason not to have it…..But right now I’m not in the mood for any jabs……in fact I would prefer to plod on & take something like that if I was unfortunate enough to getCovid.

I’m wanting to get a carpal tunnel procedure over in a couple of weeks….then if my symptoms continue I will see my rheumy …I’m due to have Rtx 2 weeks post the ctd…but not if I still feel iffy.

As you say…why do we bother?

[Neonkittie17]

Yes! I have tested for flu and pneumonia immunity last year when my rheumy advised me to have blood tests (“functional antibodies”) to see if I had any response to the flu and pneumonia vaccines. She said as she knew I’d had zero antibodies on Rtx (and Mtx) to the Covid vaccines (and Mtx and Rtx have been shown to blunt the efficacy of several other vaccines) she wanted to do those tests as well, especially as I have had so many episodes of bronchitis due to Rtx.

My flu result last year was “inadequate” (no result to record) on my blood test report and the pneumonia was “sub-optimal” (which was a very low end result/weak response) and my rheumy and immunologist said both had to be repeated at a time of lesser immunosuppression if possible which I’ve just managed to do last week. I’ll ask for the test again for my functional antibodies soon when it’s a month after my flu/pneumonia vaccines.

[Evie3 in reply to Neonkittie17]

😓. Thanks for that. You are lucky that your Rheumatologist is proactive. Dont even get to see mine as too busy with new cases. Telephone call with nurse, which is useless 🤷‍♀️

[Neonkittie17 in reply to Evie3]

I haven’t spoken to my rheumy for a year now but we’ve exchanged emails and I’ve spoken more to my nurse and immunologist. I’m no longer on Rtx but its long term side effects still continue. The lack of vaccine response is one of them. You could ask for the functional antibodies test. Maybe the GP could authorise/do it?

[Evie3 in reply to Neonkittie17]

Ok thanks

[Neonkittie17 in reply to Evie3]

Good luck. Just replied re Evusheld. Have a look at the Evusheld4theUK FB.

[Evie3 in reply to Neonkittie17]

I have 🥰…thanku

[Neonkittie17 in reply to Evie3]

💗😍

[Lolabridge]

Hello Evie3

Sadly I think you need to assume that any covid/flu/pneumonia jabs whilst on Rituximab (or within 12 months of your last infusion) are like to be ineffective or very weakly effective. I had an antibody test after my first three jabs and had a zero response!

I'm on Rituximab too and have now had 6 covid jabs, plus the flu jab. I'm assuming I have no protection and continue to be very cautious about where I go and with whom I mix. So I joined the Evusheld for the UK campaign that Neonkittie mentioned as I'm desperate to get some protection from Covid even if it's not optimal for the latest Omicron variants. We are trying to get Evusheld for all immune suppressed and immunocompromised free on the NHS. Do join us! Follow this link to find out more: getevusheld.uk/

[Evie3 in reply to Lolabridge]

Thats what I saw on the news! Yes I will join

[Evie3 in reply to Evie3]

Thankyou!

[Neonkittie17 in reply to Lolabridge]

Evusheld on the NHS is the way forward. Let’s hope and pray for a turnaround for the forgotten 500K 🙏🏻💗 The powers that be might review/change their minds with all the pressure of the heightened group activity.

[Evie3 in reply to Neonkittie17]

Definitely….will do my letter over weekend and get family to, as well

[Neonkittie17 in reply to Evie3]

💗

[Emye343 in reply to Neonkittie17]

I am a member of the fb group too - I live in Guernsey where we have our own health system (no NHS), but we largely tend to follow what the uk do.

[Neonkittie17 in reply to Emye343]

Yes, good to keep an eye in what’s happening on mainland U.K. My brother and SIL live in Guernsey (and are residents) for over 30 years now and they keep an eye on the health aspects here.

[Emye343 in reply to Neonkittie17]

hi Neonkittie17, that’s interesting. How do they rate the health system in Guernsey?

[Neonkittie17 in reply to Emye343]

They have found it really good but they did have private health cover before retirement from my SIL’s employer.

[wishbone]

I've heard there's a poor antibody response with JAK Inhibitors a while ago, but little since. I did ask rheumy about it a couple of months ago but they hadn't heard anything.

Had my covid and flu vaccines yesterday along with my wife After the recent problems I've had getting vaccinated it came at no great surprise to find that both our names were not on the list to be vaccinated, even though appointments were arranged via my GP surgery for us to have flu and covid vaccines on that day at our local YMCA. We also had appointment letters from the health board for the covid vaccine on the same day. I've just about lost faith in my GP surgery. Pray I never get covid as I'm supposed to contact my GP for antivirals. While the GP might be reliable I think it will be more a matter of pot-luck if a receptionist let's him know in time. Think it might be a good idea for me to phone 111 for antivirals as well as my GP.

[Evie3 in reply to wishbone]

i rang 111 for antivirals when I got Covid. They said a Dr would ring me in an hour. 7 hrs later we went to bed and the phone rang at 11.30pm! The Dr asked lots of questions and said someone would ring me in the morning, which they did and said I didnt warrant antivirals! Luckily I survived. Fingers crossed you wont get Covid

[Leics]

In my case I’ve chosen not to have the flu jab this year as every time I have a flu jab even well before covid or RA, I’m very unwell for a long time afterwards. I’ve asked immunology to test for antibodies for covid and they won’t so I will have to pay for it myself at some point. Immuno did give me a pneumococcal vaccination and have tested to see if I had a response to that (still awaiting results) but last time the answer was nope failed miserably. It’s very difficult to know what to do for the best. I’ve only just started back on mtx and it seems to be stabilising my RA so I’m very reluctant to stop it and have a covid jab to go back to square one again. I will have it but just not yet, when I feel I’m ready. The chances of getting evushield is very remote especially with the UK going through hard times so I won’t hold my breath for that one. I’m still supposedly shielding but can’t put my life on hold so being cautious but if I have an opportunity to be with family and friends then I go. I haven’t had covid yet as far as I’m aware even though I’m severely immuno compromised and let’s hope that continues.

[Evie3 in reply to Leics]

we all have to do what we feel comfortable with. Rituximab gave me back my life……..I have to live it the best way I can, which means I will have to take chances. My husband supports me but I cant make him put his life on hold….we are in our 70’s. Take care

[Leics in reply to Evie3]

I totally understand the difficulties that come with being immune suppressed and have had to deal with them for quite some time. We are both in our late 50’s and hubby has had double pneumonia this year so it’s enhanced our feelings that we need to be cautious but also need a life too. We have very young grandchildren and don’t want to miss out on them growing up. So we’ve made the decision to be careful but take the opportunities as they arise and take the consequences of them too.

[Evie3 in reply to Leics]

my thoughts exactly.