Lupus and the influenza (flu) vaccine - Updated i... - LUPUS UK

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Lupus and the influenza (flu) vaccine - Updated information and guidance for the 2020/21 season

Paul_Howard
Paul_HowardAdministrator

Hi everyone,

We've just published updated information and guidance about lupus and the flu vaccination for the 2020/21 season. This is of increased importance this year due to COVID-19.

It is generally recommended that people with lupus should have the annual vaccine due to an increased risk of severe complications from the virus.

If you have any questions about getting your flu vaccine this year, please take a look at lupusuk.org.uk/flu-vaccinat...

31 Replies
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Hi Paul, is it also for SLE Lupus sufferers to be vaccinated as it’s only the skin is affected... I’ve only had 2 flu jabs & each time I’ve ended up in ICU, other than that, I’ve never even had a cold..... Thx

Paul_Howard
Paul_HowardAdministrator in reply to Teanna

Hi Teanna. I don't believe that people with cutaneous lupus would be considered as such a high risk for serious illness, but this may depend upon their treatment and personal medical history. If you've had such a difficult experience of the flu vaccine in the past I would definitely recommend you discuss it with your consultant or specialist nurse if possible.

Teanna
Teanna in reply to Paul_Howard

Hi Paul, my GP insisted that i must have the jab, although she knows the outcome, but it’s with my other health issues, APS, Liver failure due to opiates, Osteoporosis, RSD (it’s now know as chronic pain sufferer) Crumbling of the spine (that’s to name a few). But I don’t want to risk having the jab again.....

Regards Teanna

denden
denden in reply to Teanna

Hi Teanna, which two flu jabs did you receive? For the sake of clarity, have you already had these shots for 2020?

Teanna
Teanna in reply to denden

Hi Denden, no I’ve no shots now for the last 3 yrs (although my GP books me in for one), bt as I told her, each time I ended up in ICU.

Thx Teanna

Amakura
Amakura in reply to Teanna

I experienced something similar but the difference was that after every flu jab, I ended up with pneumonia. However, I always review my decision every year with my GP. So far, I've declined every single time but 2020 talk is in the pipeline.

I would speak to your GP about it for this year especially because of the pandemic

Teanna
Teanna in reply to Amakura

Hi, My GP insist me having the jab but it’s so scary, & as pointed out to her, I’ve had a reaction both after being jabbed..... I’ve become so ill....she does not belief it’s got nothing to do with the flu jab, and it’s imperative that I’m to have the flu jab....

So I’m back to square one.

Thank you for replying.

Amakura
Amakura in reply to Teanna

Have you tried speaking to the Lupus nurse instead about your concerns?

Newby12
Newby12 in reply to Teanna

Hi Teanna,

Sorry to correct but if you’ve got SLE and say only your skin is affected then it’s called DLE. SLE is the more serious form of lupus in which your whole body is affected ie systemic lupus erythematosus rather than discoid lupus erythematosus which normally affects only the skin but SLE can morph into DLE etc and so it goes on😢

I’ve got SLE and have been GP advised to have the flu jab which is a non live vaccine.

Wondering whether you’ve had a rare adverse reaction to the vaccine or was it actually something else?

You’ve got to check this out!

Note that colds are not influenza (flu). Flu can be life threatening so take care!

Thanks Paul for the recommendation.

Regards

Krazykat26
Krazykat26 in reply to Newby12

Hi Newby

I would just like to make a point here about DLE..under that umbrella is SCLE which is my diagnosis currently (subacute cutaneous lupus erythematous).

I know that it's seen as not as serious as systemic lupus but u can believe me when u tell u that's it's just as debilitating!! Fatigue, joint pain, etc all happen with us too..n for me personally I'm extremely light sensitive so I'm trapped inside for much of the year..when I do go out its in a wheelchair coz lupus attacked the skin on the soles of my feet n the palms of my hands at first I'm permanently disabled!!

I'm now on the same combination of meds as many friends here with SLE n am extremely clinically vulnerable..in being treated by dermatology n have my first rheumatology appt in couple of weeks!!

My particular form of lupus has had a MASSIVE impact on my life even though my inner organs r ok..for now!! The drugs I have to take will be impacting in my liver n kidneys alone!! Before lupus I wouldn't take pills for anything n now they're what keep me functioning..I can't do all the normal things like showering, washing up etc coz I have a weird reaction to water..it brings me out in a rash!! 🤦🤷

I know it was just a passing comment but please do not assume that lupus affecting the skin is not serious..after all skin is everywhere..it keeps us all together for a start n protects us from infection..we all know how much a paper cut or a blister hurts!! I've got pics of my feet that would make u 🤮🤮😹🌈😽😽xx

Newby12
Newby12 in reply to Krazykat26

Hi,

Sorry to hear but us lupus sufferers must take care.

Who knows with lupus what cells, tissue, organ or organ system will next flare up and cause us distress?

I did not say that one condition was less serious than another. I was merely highlighting the recognised distinctions between the complicated and varied lupus manifestations.

I am currently diagnosed with the following medically recognised distinct autoimmune conditions:

SLE, DLE, subacute cutaneous lupus erythematosus, lupus nephritis (class 5), vasculitis, type 1 diabetes, primary hypothyroidism, drastic autoimmune alopecia...😫😢...plus a myriad of disturbing and distressing symptoms associated with lupus as you’ve mentioned above.

I totally and absolutely empathize and sympathize with you.

I’ve recently had a dreadful skin flare myself up and am back on the steroids.😩

This is a most unpredictable and distressing disease. I’m honestly not “competing” with anyone here.

Keep safe and take care!

❤️ to ALL

Thank you for the update

Oops! just saw this after my post under the covid19 article :-)

Cant get through to book it and I've got to take my son separately as they havent sent for him as someone who loves with a shielder.

🤷‍♀️

Paul_Howard
Paul_HowardAdministrator in reply to Spanielmadlady

Hi Spanielmadlady,

Is it your GP surgery you're struggling to get through to? Could you try other places in your local community offering the vaccine, such as pharmacies. You and your son should still be able to get it free if you have a doctor's letter confirming your diagnosis.

Hi Paul.The surgery flu appointment number is constantly busy.ive had problems with my son in the past as they want to give him the children's live vaccine which he cant have because of me

Paul_Howard
Paul_HowardAdministrator in reply to Spanielmadlady

Ah, ok. I hope you're able to get it sorted soon. Keep us updated.

Finally after 43 attempts I finally got through just before the line closes at 3pm.i was expecting to wait weeks given the struggle to get through but next thurs 8th 🤷‍♀️ asking about my son hes will be on the children's list even though he has the adult vaccine and I've got to ask again in a few weeks time x

Thanks Paul. Perfect timing! Best wishes Kevin

Thanks Paul. I’m getting one but had to push for it. They didn’t want to give it to me.

Paul_Howard
Paul_HowardAdministrator in reply to CRYSTAL11

I'm sorry to hear you had to push for it, but well done!

denden
denden in reply to CRYSTAL11

I can relate. I am tired of fighting. Last year I swear received a placebo because of the constant calls made to the surgery.

This is mind-boggling~! Does it mean that I have to change my name in order to get the required flu shots due to Lupus sufferers? Paul, why is there a distinction between SLE and other Lupus patients?

Paul_Howard
Paul_HowardAdministrator in reply to denden

Hi denden,

The flu vaccine is prioritised for those at highest risk of severe complications if they were to contract the virus. People with SLE are often considered higher risk of these complications than those with cutaneous lupus because they have systemic symptoms that can affect any of the organs including the heart and lungs. People with SLE are generally also more likely to be taking oral steroids and/or immunosuppressant medications.

Hi, I’ve got SLE on my diagnosis and not DLE..... I know it’s my skin, but when this was diagnosed was in Liver failure (this was only last yr).... I was supposed have a test urgently (then the lockdown started) so all my apps (7 different consultants for different things) but the Liver testing is only done in 2 hospitals in the UK, so weather it’s all to do with that, I don’t know.... Now the 2 hospitals that deal with my issues, are on half lockdown, so I don’t know exactly what my health issues are due to the Virus....

Thank you for your info, maybe my GP knows something that I don’t, u can’t even get an appointment, it’s all done by phone, that’s know good for me....

Hi I have lupus for 17 years but I I have allergy's to the antibiotics and lung syrups, I had get flu shot 3 years ago and I didn’t allergy to that but now I have feared for get the shot ,can I get hydrocortisone before taking the flu vaccine?

I stopped the hydroxychlorocin for 4 mounts I don’t now why I take the heart beat and the cardiologist stoped my hydroxychlorocin, but I hadn’t increased of QT ! Even though I stopped taking the pill, I still have a heart beat , I taking half concord ( bisopriporpl) 2/5 every day . I told the cardiologist my sign back up and I should take the hydroxychlorocin he prescribed me diltiazem every day and hydroxychlorocin day by day I can’t confidence to this cardiologist and I went to the other cardiologist and she said I should take metoprolol 23/5 every day and start hydroxychlorocin but i didn’t start that because I afraid.I get bronchitis last year and I coughing every day and shortness of breath becous of that I have phobia for drug and injection . Whit this summary can I get the flu vaccine?

Paul_Howard
Paul_HowardAdministrator in reply to asma1364

Hi asma1364,

I'm afraid that we are not medically qualified and therefore cannot advise you about whether you should get the flu vaccination. I recommend that you speak to your specialist nurse or consultant.

Thank you Paul for this information

🦋❤️

Thanks for the information Paul. A warning to others having their flu jab - check the practice are giving you the right one! I had mine Saturday at the mass vaccination in the surgery. She asked my name, ticked me off the list, and gave it standing up in the doorway of the consulting room. Went for some blood tests today and the health care assistant asked me to wait to see the Nurse Practitioner afterwards ; "I'm so sorry, but we've given you the one for the over 65s, which is trivalent." Turns out I'm supposed to have the quadrivalent one that's for under 65s which covers 4 strains, not 3. She said I could return after 3 weeks to have the quadrivalent if I wanted. Not impressed! So do check/ask which you're being given please!

I had my pneumococcal jab a few weeks ago. I haven't had an invitation for a flu jab yet but am supposed to be getting one.

Last time I had a flu jab, in 2017 before any mention of lupus (though that doesn't mean it wasn't there already, just undiagnosed maybe?), I got pneumonia shortly afterwards. This put me off getting a flu jab in 2018 & 2019. I've never had flu before.

Obviously everything is different now, I have SLE (and some investigation is ongoing re my skin) and covid is on the rampage.

After speaking with my GP she reassured me that I couldn't get ill after a flu jab because it isn't live and those that do are ill purely by coincidence because of the time of year and all the bugs going around. After reading some of the responses here I'm now worried again that having the flu jab might lead to another bout of pneumonia and I really couldn't cope with that alongside everything else, especially if it meant going into hospital.

I'm scared. Will the pneumococcal vaccine protect me from that happening? I don't want to lay myself bare but I don't want to be ill again. I'm still waiting for all my meds to kick in properly and do their magic from my initial diagnosis earlier this year.

What should I do?

Paul_Howard
Paul_HowardAdministrator in reply to Whippet_lady

Hi Whippet_lady,

It is generally advised for people with lupus to get the flu and pneumococcal vaccines. Most people will have the vaccines with no ill-effects. It is uncommon for people to experience a reaction and not always possible to certify that it was a response to the vaccine rather than contracting a circulating virus. The vaccine takes around two weeks to be effective.

If you are very concerned about having a negative reaction then try speaking to your doctor about it.

Hi Paul, thanks for this. Hubby and I had ours yesterday. Apart from a little tenderness where the needle went in no side effects - so far so good. Thanks again.

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