LUPUS UK
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Flu jab ??

As I’ve just got over a bad bad case of flu. Would any of you recommend me having the flu jab ? My uncle popped into see me earlier coughing & spluttering, he got the flu @ caught it hours after being with his grandchild. I catch things so quickly, didn’t take me long for the common cold to turn into flu. The jab sounds like an ok idea but I’ve been told I can become really ill afterwards ?! Catch 22 x

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Hi I was told to definitely have the flu jab by the rumi consultant

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Thanks Ianrussell69

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I was only diagnosed with Lupus in November I was recommended by my doctor to have the flu jab, I didn’t have any side effects from this.

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Hi Jhpc

Thanks for your message, I don’t have a definite diagnosis for lupus yet. Glad to hear you didn’t suffer with any side effects. X

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Ive has the flu jab every year without any after affects apart from an achy arm.

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Hey twitchytoes

That’s great & very positive

Thank you x

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Hi Laura

That was so irresponsible of your Uncle coming to see you bringing his germs!. Your going to have to explain how vulnerable you are and need to avoid these things!. I was recommended to have flu jab. It doesn't give you flu but can flare your illness slightly if you've got an auto- immune one!. It does for me but doctors say I must have it and shows flu would be ten times worse!. It's a test of your treatment though because if it's working well your not ill afterwards!. I used to go years without a problem!.

I think it would be a good idea for you to have it but talk to your GP first!. Good luck for your Gastro test. Thinking of you. X

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Hey misty14

He’s the worlds biggest hypochondriac, he moans about trivial stuff like dry skin on his eyelashes and paranoid about a tiny spot. Etc

he knew it took me just over 2 weeks to get over the flu,. And I swear he was coughing towards me on purpose! He’s a joker but it’s not funny when I have to suffer more than the average person when it comes to cold and flu. Ive got my cough back which is highly annoying ! I have a rattle snake in my chest. I’ve tried to get hold of the GP but mine is now on leave ?! So I can’t be fitted in till 16th January now. I just feel rotten again, my flu started with a very severe sore throat and headache, I have the headache just now.

So it’s true that I can catch it again ??

Yes I’ve just booked in for the flu jab. Thank you to you all made my decision easier to make. I don’t feel as worried as I did. Xx

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So glad to help Laura. I may have come across as a bit harsh this morning about your Uncle . Lovely that he wanted to see you and came over but it's not funny when your so at risk of catching things because your so I'll!. If you do get it again it shouldn't be as harsh because your immune system will recognise it and send the invaders in to fight it!.

I'm glad your getting the flu jab and do hope your headache and cough gets better. It's tough this time of year being ill and not being able to get a GP appt!. That's quite a wait!.

All the best, thinking of you. X

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Not at misty14 you are spot on. My uncle is quite selfish in nature & very self centred at times. He only came over to moan & spread his germs. Due to his paranoia he babbles on about literally nothing & his health concerns are psychological. I’ve explained to the family I cannot see them if they are ill, it’s not me being rude it’s for my own health concerns, it’s not worth the risk.

putting myself first is a new learning curve.

Thank you ever so much, yes it’s a long while to wait to get into seeing my GP my parents & brothers on the other hand get in straight away. Or even get a over the phone call appointment.

Resting is my only option till then x Hope your ok misty & life is being kind to you x

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Hi Laura

I'm waiting to hear from my gastro consultant re colonoscopy. I m recovering from another painful flare so left a message for him!. I've got the same new year resolution as you so let's see how successful we are!. Your uncle sounds difficult to deal with!. Are your brothers with a different surgery then?. They should all offer telephone consultations specially at the moment!. Can you change to theirs?. TAKE CARE X

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Are u eligible for it? Or are u paying for it? U can only have it on nhs if on certain meds etc

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I’m on ESA benefit & was told I could have it done on the NHS.

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Hi Sara_A,

Patients who have lupus fall into the high risk group. They may be on immunosuppression, on steroids, and lupus disease will classify as being immunocompromised.

gov.uk/government/collectio...

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I don’t think that’s right tho, as it is only if u are on immunosuppressants. I’ve had this discussion a few times.

Lupus doesn’t make u immunosuppromised only treatment does?? So unless u are on treatment it wouldn’t come under eligibility

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Hi Sarah A,

I’ve spoken to my GP & pharmacist just now & I am eligible...

My Aunty has the flu jab and she hasn’t got lupus. We both have asthma. & suffer with chronic respiratory infection/illness.

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Hi LauraMk30,

We have an article on our website which answers a lot of questions about lupus and the flu vaccine which you may find helpful - lupusuk.org.uk/flu-vaccinat...

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Thanks Paul

I will take a look at this article, due to not having a definite diagnosis just yet, I’m in limbo once again. All of my bloods results were positive for the lupus screen. It’s frustrating because I was told I had it and now I don’t & the specialists I have seen don’t have a clue. I need to find a specialist who knows how to deal with complex issues like mine.

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Hi LauraMk30,

Whereabouts do you live? I'd be happy to let you know about any lupus specialists we know near your area if you think it could be helpful?

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Hi Paul, I live in Cheltenham Gloucestershire. I think that would be really helpful as no one around here has a clue.

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The nearest specialists to Cheltenham who we know are probably those based in Bristol and Bath.

The Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath is a LUPUS UK Centre of Excellence. You can read more at lupusuk.org.uk/centres-of-e...

Dr Harsha Gunawardena is a lupus specialist at Southmead Hospital in Bristol.

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Thank you ever so much Paul. I’m hoping to come up with a plan of action via formal letter from myself to my Gp. As I’m left to deal with it myself & I’m not entirely happy with the treatment I’ve received. I understand it’s complex but I just seem to get thrown from pillar to post & as it’s a long 14 years & the last 2 years I’ve been non stop unwell, with no remission or break period in between. Just a constant flow of symptoms & illness that hasn’t been sorted. I will do some research & I hope I can be seen or referred to one of those clinics. It would be a godsend to get some Answers from specialist who know how complex & complicated things can become for someone with a unnamed AI disease. I’ve had so many doctors turn there backs on me & all I’ve ever wanted is a little bit of help. As you can see from my posts it’s been endless & a little break would be lovely.

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Sorry just saw u are in glos!

I used to see dr hickey at glos hospital or was in Bristol before that.

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I’m never heard of that doc. I’m cheltenham based but have visited Gloucester royal hospital on occasions.

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It’s not clear in the nhs guidelines about lupus but then when is it ever clear with lupus!

It needs to be defined better

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So are you trying to say in all your posts that I am not eligible for the flu jab ?

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Part of that was discussion with Paul about lupus not being listed as an inclusion criteria.

It’s a difficult area and I think not very clear cut, as if u are on certain meds for lupus is steroids and immunosuppressants ur immune system is suppressed therefore making u eligible.

If u have asthma and are on a steroid inhaler you are entitled to it on that basis.

Paul put a link on for an article about it but I was just saying that it differs from the nhs eligibility guidelines that it doesn’t specifically state lupus or autoimmune disease.

U probably won’t be invited for the flu vaccine to ur surgery if u have not yet got a diagnosis or on these certain meds because it won’t flag u up as being eligible.

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But if the gp has said directly u can have it that’s fine, that’s how I got it for many yrs as reception would argue with me that I wasn’t entitled to it (even tho I was on steroids) and the gp used to say yes I was and would give it to me himself!

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Ahh ok, I was a little confused. I’m on a steroid inhaler and struggled terribly with the flu. I’ve had it twice that can quickly turn into pneumonia once before. Due to modules on both of my lungs I’m prone to bouts of bronchitis. It’s been available to me but I’ve declined the request every time, as I assumed it would make me more unwell. But thankfully after the great comments I’m going to go ahead.

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Yeah so u are probably ‘eligible’ on their system as able to have it cos of ur steroid inhaler/asthma. Which makes it easy then cos like the others are saying it’s a bit of a grey area with lupus now they don’t even have to um and ah about lupus u can have it anyway!

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I think it’s a grey area but most GP practices are keen to get anyone with chronic illnesses to have it I have found. But I think only people who have respiratory conditions, terminal illness, over 60s, children or those on immune suppressants are actually invited to have the flu vaccine in most practices. I know that my old practice badgered me to have it even when I wasn’t on any disease modification or steroids but since I’ve moved to a larger place it was my immunesuppressant medication that got them texting me with vaccination times.

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Hi Sara_A,

Unfortunately it is not possible for the guidelines to list every condition which should be classed as high-risk and eligible for a free flu vaccine. Most GP practices will tend to give the vaccine to their patients with lupus although there are some which may dispute it unfortunately - if this is the case, we recommend asking your specialist nurse or rheumatologist to write to your GP requesting a flu vaccine for you.

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Hi LauraMK30, I didn’t have the flu jab for many years for fear of it making me worse than I already felt even though in the past flu has completely floored me for many weeks on several occasions and ended up with post viral arthralgia, until my rheumy recently said I must have it and so I did just before Xmas and other than feeling achy and a bit shivery in the evening the following day ,( which isn’t dissimilar to how I feel anyway) I’ve not had any side effects from it, I would say definitely have it, I’m glad I did and I’ll have it done every winter now. It has to be better than risking full blown flu!

I agree with Misty, friends and family need to be mindful and shouldn’t knowingly bring their germs to you.

You can’t catch flu from the jab as it’s not a live vaccine.

Hope all goes well for you.

Take care 🌸xxx

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Flu jab doesn’t make you sick, it’s a dead virus cooked in eggs, it’s most likely what’s in the flu job giving the side effects I sometimes feel sick afterwards and other times I’m grand, it’s not to protect you fully from getting ill it’s to protect you from getting the worst case of the flu that’s what my doctor said.

Also you can get the flu jab in the chemist from £10 if they say there’s an issue. I never had an issue I was always told from day one I had to get all these shots.

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Just letting you know I had the flu jab, a few aches afterwards but nothing I can’t handle which is a good sign:) x

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