over 65 flu jab - bad reaction: Hello everyone - just a... - NRAS

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over 65 flu jab - bad reaction

rheumatoidsewer profile image
37 Replies

Hello everyone - just a quick post to ask if anyone has had an adverse reaction to the flu jab given to over 65s this year? I have just had a very unpleasant and painful reaction to the flu jab with pain but more than anything extreme heat in my shoulders, elbows, wrists and finger joints. Have discussed this today with rheumatology nurse and she agrees with me the flu jab was probably to blame for this extreme reaction by my immune system. I was already suffering a flare and am awaiting rituximab treatment but she had given me a depo injection but that and the methotrexate dosage made no difference to this inflammation following the jab. Thankfully it resolved and started to get better after 4 to 5 days but just wondering if anyone else has had this reaction and if so what if any action did they take?

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rheumatoidsewer
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37 Replies
nomoreheels profile image
nomoreheels

I'm not quite that age yet so didn't have the adjuvanted trivelant jab & it's a bit after the horse has bolted but whoever gave it to you should have specifically asked if you were well that day, they shouldn't inject you if you aren't. As you were in flare obviously you would have said no but unfortunately as your nurse has said it caused the response you had, it stimulates your immune system to make antibodies which resulted in the pain in the specific joints.

Next year definitely rearrange having it if on the day you're not well or in flare. I'm pleased you're now feeling better.

AgedCrone profile image
AgedCrone in reply to nomoreheels

I'm seriously thinking of not having the FLUAD adjuvantted vaccine. I had my prescription review last week with a Prescribing Pharmacist & she suggested I don't have it before I speak to my rheumatologist. I saw him& forgot....so unless I can get hold of him I don't want to chance a reaction because my RTX infusion is due exactly four weeks after vaccination day.......if I miss my booked date I'd have to wait until March to be vaccinated so no point really....the RTX is more important to me than the chancing the vaccine.

I survived Flu this year so probably could do so again!😷😷😷

Downtime profile image
Downtime

I know this is a bit controversial but I feel that the flu jab I had in 2013 triggered the start of my RA. I had been under a lot of stress previously and after a bad bout of flu the previous winter I decided to have one, never having had one before.

It was the swine flu H1N1 and I had an awful reaction. After 5 or 6 days I developed a headache , nausea and bad neck pain. My vision was affected and I couldn’t focus. This lasted 3 or 4 weeks.

My doctor said it was an immune reaction and I shouldn’t have another one,

A couple months later the RA inflammation started.

All research says it’s not a live virus so it shouldn’t cause any problems but I’m not sure. Maybe It was just a reaction to something in the jab and the RA was a coincidence......who knows

Nsmith13 profile image
Nsmith13 in reply to Downtime

Yes you never no but I had mine no reaction at all and I'm 70 was on steroids for flair and it all went fine I did have a bad reaction yrs ago before Ra and I was so ill. ????

rheumatoidsewer profile image
rheumatoidsewer in reply to Downtime

Yes I was told it was not a live virus too and if so I suffered a bad reaction to what? I was asked at the time if I had had the flu jab before and I have had it for the past 5-6 years with no problems so it must be this specific vaccine to blame. I cannot say for certain what triggered my RA some 15 years ago but my birth mother developed the same disease at the same age so I think a predisposition must play a part for some people and then circumstances act as a trigger. It is significant though that if I catch a virus a flare will more than likely follow so it could be the combination of a virus about 6 weeks ago added to which 4 weeks later the flu jab then combined to cause this reaction.

Downtime profile image
Downtime in reply to rheumatoidsewer

Vaccines stimulate the immune system to produce antibodies against the virus in the vaccine so it follows it might have some effect on us AI lot.

Maybe some people are more sensitive than others . My mother developed RA when she was in her 30s so it must be in me. Funny it never occurred to me that I might get it...

Simba1992 profile image
Simba1992 in reply to rheumatoidsewer

It could have been the adjuvant you reacted to. Read somewhere earlier that AI patients should not take the three strain with the adjuvant because of a greater risk for adverse effects.

Downtime profile image
Downtime in reply to Simba1992

That’s interesting Simba. Ive looked it up and I can see that it might have an effect on some of us if we’re genetically predisposed to it. Anyway I spose I’ll just have to take my chances with the flu as I’m too scared to have another one!

AgedCrone profile image
AgedCrone in reply to Downtime

Think that is a "me too".

I can't get any sensible information from anybody...after speaking to a pharmacist, TBH......I don't think anyone knows!

rheumatoidsewer profile image
rheumatoidsewer in reply to Downtime

I will definitely be discussing with my consultant whether I should have this vaccine in future and what further precautions I can take to avoid what was a very frightening reaction.

wishbone profile image
wishbone

I had the flu jab 10 days ago, two days later my tinnitus, which has been mild for all the years I've had it, and almost non existent for the last couple of years, suddenly went crazy and hasn't subsided since! :-( Enough to say that I'll be taking my chances with the flu from now on. Can only hope that this tinnitus will eventually go back to how it was.

Gnarli profile image
Gnarli

I was offered the adjuvanted three strain but decided to ask the nurse for the four strain version. She said it was my decision and was quite happy about it. I've had no reactions apart from a slightly warm lump on my arm the following night. It's a very personal choice though.

wishbone profile image
wishbone in reply to Gnarli

Hiya J,

Wish I had done the same and asked for the 4 strain. Not sure the nurse I saw would have been so obliging though even if I had. I never knew anything about adjuvant until I read your post. Wonder if adding that to the over 65's jab has caused issues with some people? I had a quick read about the adjuvant vaccine and the only side effect mentioned was a sore lump at injection site, which I found a bit odd seeing that I've had a lump and sore arm after most if not all of my previous flu jabs and haven't had the slightest injection site reaction to this one.

I'm off to see my GP about this tinnitus tomorrow. The best I can hope for is that wax is the cause but I very much doubt it.

Gnarli profile image
Gnarli in reply to wishbone

There was quite a lively discussion on here and a piece in our newspaper which gave me pause. I was also lucky that the practice nurse was so kind. I wish you all the best for your appointment re tinnitus. I would suggest that mentioning social isolation, turning into a hermit, loss of enjoyment of your music might help.

wishbone profile image
wishbone in reply to Gnarli

Will do. Thanks J.

If there's no real problem with something then why on earth don't they leave well alone!

Simba1992 profile image
Simba1992 in reply to wishbone

Actually quite a few on the net that complained about connection beween tinnitus and flu shot. You're not the only one.

wishbone profile image
wishbone in reply to Simba1992

I won't be surprised if the number of complaints increase with time.

Not that there's much point, but I'll mention my suspicions when I see my GP tomorrow.

AgedCrone profile image
AgedCrone in reply to Gnarli

The pharmacist I spoke to said NHS GP's have been told not to give the regular Flu vaccine to over 65's!

It all seems a right old muddle.

Tillie20 profile image
Tillie20

Hi I had the over 65 flu jab and thank goodness I did not get much of a reaction only a slight lump on my arm and it was very itchy thank goodness nothing else as I was in Singapore after I had it x

MajesticMo profile image
MajesticMo

Hi, I had the jab and the next day had a flare!, Legs, arms and swollen hands, very painful for about 5 days. Thankfully much better now, have never had this sort of reaction from the flu jab before.

oldtimer profile image
oldtimer

No (new) problems after the trivalent inactivated vaccine except a slightly sore arm for a couple of days.

Mmrr profile image
Mmrr in reply to oldtimer

Likewise with me. No problems at all, except a sore arm for a day.

popsmith1874 profile image
popsmith1874

I had mine last Friday and now I'm choked with the cold and joints swollen and sore, hopefully things settle down as I'm off on holiday to Lanzarote a week on Saturday xxx

Flatstanley profile image
Flatstanley

I had the over 65’s jab nearly three weeks ago. I suffered quite severe headache for nearly two weeks, plus my IBS went into overdrive. I have felt very poorly. Not sure if it’s connected to the jab, but seems suspicious. Xx

Simba1992 profile image
Simba1992 in reply to Flatstanley

Find it a bit unethical that patients are not informed about the differences in these flu shots. Especially about the addititional risks for AI patients with the adjuvant. Immune compromised patients should have the right to have the four strain one.

Flatstanley profile image
Flatstanley in reply to Simba1992

Simba, I did query it but was told it was perfectly fine when clearly it was not. I have now been advised to have shingles jab now I’m 70 but don’t think I will. Seeing rheumy in few weeks, will ask him first. Xx

wishbone profile image
wishbone in reply to Flatstanley

Glad your headache eventually stopped. Praying my tinnitus is just temporary as it's beginning to drive me nuts!

Flatstanley profile image
Flatstanley in reply to wishbone

I hope you do get some relief from the tinnitus. I have suffered with terrible tinnitus for many years now, and understand your distress, it really is quite life changing. I was eventually diagnosed as having auto immune ear, and I get steroid injections into my eardrums which does help a little. Meanwhile Wishbone keep the music playing, anything which can be a distraction from the tinnitus. Xxxx

wishbone profile image
wishbone in reply to Flatstanley

An auto immune ear!...are any parts of our bodies safe from auto immune disease?! Those eardrum injections sound like fun!

Unfortunately playing music doesn't seem to help much as the high frequency whine I'm getting is still audible, even if I turn the volume up. So disappointing after spending a lot of money over the past year upgrading my hi-fi system...bloody typical! :-( Running the cold water tap, having a shower and flushing the toilet does mask the tinnitus some, but not sure I want to live the rest of my days sat on the loo repeatedly flushing it.

Thanks Fs, take care.

Flatstanley profile image
Flatstanley in reply to wishbone

Don’t know if this will help, but audiology gave me a masking device. You pop this little ear bud type thing in your ear and it emits a white sound (mine sounds like a radio which needs tuning in). It is actually very soothing, so much so that it always sends me to sleep ! Even when I need to be awake ! For instance I could never wear it while driving. I have to say audiology have supported me so well and they really do understand the nightmare of tinnitus. Xx

wishbone profile image
wishbone in reply to Flatstanley

I've held off replying because for the first time in 5 or 6 days my tinnitus started to improve on tuesday afternoon. It was even better on wednesday (something I could live with) and barely noticeable when I saw my GP. Because it had reduced my GP tended to think that blocked glands just below the ears may be the cause. Along with prescribing tablets he also told me to gargle salt water, swallow hard and chew some gum. I asked if he thought the flu jab may have been the cause, but as expected he denied there was any link.

Anyway, I left the GP'S full of optimism that my tinnitus would continue to improve as my glands cleared. Alas, by about 10pm I could feel it returning, the next thing was it woke me up squealing away as bad as ever in both ears at 4am this morning, and hasn't let up since. I'm not sure if the temporary tinnitus you get with blocked glands would be as acute as what I'm experiencing. My GP told me to go back in a week or two if things go downhill again. When, not if, that happens, sorry for my pessimism, I will ask to be referred to an audiologist.

Glad the ear bud transmitter is helping you...hope one will do the same for me if needed. Thanks for taking the time to reply to my woes.

NicolaP profile image
NicolaP

I purposely came onto the forum this evening to see whether anyone had been given the over 65s jab and whether they had had issues as I'm due to get my flu jab tomorrow morning when I have bloods done for next week's Rheumy appointment. Having only just got back into full-time employment in the last three weeks I shall be asking for the other jab as there is no way I'm taking the chance of having to go off sick because of it. I'll take my chances with the flu ....

NicolaP profile image
NicolaP in reply to NicolaP

As an update, according to the GP Surgery nurse only the "over 65s" should be given the "over 65s" flu jab so didn't have to make any decision. That said, they've run out of the other one anyway so still waiting for my annual jab.

janmary profile image
janmary

I didn’t have that sort of reaction, in fact my joints have been better, but I already had a bit of a cold when I had the jab and then did my usual M/x jab 3days later. And had a chest infection, fever, headache, constant racking cough and could do nothing for about 12 days .

I should have known better of course. I don’t blame the flu jab - just should have postponed it.

Gigi71 profile image
Gigi71

My sister and brother in law had their flu jab on Saturday for the over 65's. My sisters arm hurt like mad after and she has been feeling very unwell since. My B I L had a dreadful night, wide awake and sweating all night. Has started off his gout. Neither have RD or had problems in previous years with the jab. Has completely put me off. X

Simba1992 profile image
Simba1992 in reply to Gigi71

Evidently the adjuvent does make a difference in some people. Understand your concern.:(

Gigi71 profile image
Gigi71 in reply to Simba1992

Thanks Simba. I meant to discuss with my GP when I saw him on Thursday, but as always I had other problems and simply forgot. I know he is very much for the flu jab, he normally tells me not to forget to have it. The easiest thing to do is to write in, as appointments are hard to get. X

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