Colds and flu…🧐🥹?: ”Why don’t lupus patients... - LUPUS UK

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Colds and flu…🧐🥹?

Suvi8901 profile image
33 Replies

”Why don’t lupus patients catch cold? Many, many patients comment on this observation – that during cold and flu epidemics they seem to be the only family member not affected…?”Professor Graham Hughes, [the London Lupus Centre] 2008

Just wondering about this observation but I personally have not had a cold or flu for ages.

Recall  svfarmer saying she rarely got flu?

Also many here have also noticed this and have posted.

Hence why bother getting jabbed to the hilt?

Why fret about the jabs?

Do some lupus patients have/acquire super antibodies to these viruses?

What are immunological mechanisms involved? Anyone?

What would be a reasonable explanation for 2023 if true?🥹

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Suvi8901 profile image
Suvi8901
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33 Replies
Sarah74 profile image
Sarah74

well I’ve never heard this before. Everyone I know with lupus on immunosuppressants catches more cold and viruses, myself included.

MusicalFurbaby profile image
MusicalFurbaby

This is news to me. Being immunocompromised, I seem to catch every respiratory and gastro bug going around. At present, I get sick an average of once per fortnight. Would be interested to hear other people’s replies as well.

Kevin53 profile image
Kevin53

Yes, Graham Hughes often asks this question when he is in a roomful of folk with Lupus. Very few hands are raised. Wonder what the comparison with Covid looks like? Best wishes Kevin

Treetop33 profile image
Treetop33

My pattern is that I resist colds etc. quite well until I don't. Then it gets very serious. I guess it's about having an overactive immune system. But as we know with Covid, overactivity means it can turn against us (cytokine storm). Plus we are vulnerable because we take immunosuppressants.

lupie46 profile image
lupie46

I get every cold and flu virus all winter!

SleepyWolf profile image
SleepyWolf

This resonates with me - I can't remember the last time I had a cold or flu. I don't get the flu jab as it seems superfluous for me. I am not on immunosuppressants though, just hydroxy.

xechoo profile image
xechoo in reply to SleepyWolf

may i know your other medicine ? do you also take methyl?

Spanielmadlady profile image
Spanielmadlady

News to me too. I get colds and being immunosuppressed and steroid dependant when I do It takes me alot longer to get over one than anyone else . My family try and stay as far away as from me as possible when they have anything too. Spottyewe has just had a cold. I used to work in a nursing home . Some winters I'd catch norovirus some I wouldn't .🤷‍♀️

As for vaccines ....they are designed to prime the immune system to lessen illness so we could be alot more poorly without them. Just need one for colds now 😆

Chris21 profile image
Chris21

define cold or flu?

I would say I’ve not had one for many years, built up resistance from working with children 27years? or is it because I have so many chest infections and sinusitis that I wouldn’t notice a ‘cold’ or flu. Im still able to function, with these problems doesn’t always ‘knock’ me out like flu would 🤷‍♀️

The one thing both me and my daughter have noticed since our diagnosis and on hydroxychloroquine is we never seem to get a high temperature? The most when we’ve not been feeling well is 37.9 which isn’t classed as high (although we see it as a signal) as ours is usually 35-36.

Don’t know if having flu/covid vaccine helps but I still have them, not taking any chances 😁 oh and 🤞I’ve not had covid yet!

StriatedCaracara profile image
StriatedCaracara in reply to Chris21

When I had swine flu, I did not get a high temperature. Later learnt maybe one in ten did not..Also with covid did not get a high temperature.

Thanks for raising Chris. I relate to this too.

Florence91 profile image
Florence91 in reply to Chris21

Def agree about not getting a high fever. I am on steroids for life now as I can't get off them, and can be really unwell with no fever.

posthinking01 profile image
posthinking01

Bit worried about admitting this as could tempt fate - I am on steroids have adrenal insufficiency and Lupus and autoimmune thyroid disease but also don't get colds or flu. But I wash my hands regularly do NOT touch door handles - lift buttons etc. anywhere where the rather dirty general public have touched previously. I also carry hand sanitizer and use when necessary. I had to comply with the government rules on vulnerability and was indoors for nearly 3 years. After lockdown - my husband went to the GP practice for a blood test and brought back Covid - I was horrified - I was vomiting unable to keep food down - dreadful state until I realised the vomiting was the adrenal gland response - I upped my steroids to double - I took a course of antibiotics that I have to keep for emergencies to cover any chest infection that might come about - I took a strong multi vitamin and also took DHEA which I had been taking anyway but stopped when I got Covid as wasn't sure it would be OK to take - then I looked on the internet and saw that DHEA was being used for Covid - successfully. Within a day I was up and about at my computer (only 3 days feeling rotten) working - had a dreadful cough and runny nose but I felt OK Took 2 weeks for the cough to go but all in all I got over it without any complications which with Lupus and kidney issues it could have been worse - particularly as due to UTI's I have had Sepsis twice. I did not have the vaccination for Covid but my husband did and I was nursing him with Covid whilst I was up and about and coping.

Cohan profile image
Cohan

l also have not heard of this. I seem to catch every cold etc that’s going

Hamptons profile image
Hamptons

when I worked in schools I did notice that I avoided many of the coughs n sneezes. But when I did get it I was wiped out for weeks. But have wondered this myself. Altho I got Covid first, maybe I am just selective about my illnesses.

chrisj profile image
chrisj

Speaking for myself and before I was diagnosed with SLE I started coming down with flu every winter coupled with laryngitis and I was quite poorly, chest infections as well.

Never hospitalised I took care of myself but I did call a gp out on one occasion (as far as I can remember) and she left a prescription for antibiotics "to guard against chest infections". I went out to collect the pills myself in spite of feeling unwell, able to get the bus there but as its a one hour service I had to walk back, legs wobbling a bit.

Once diagnosed with SLE and given the right treatment for it I'm now stable and can't recall the last time I had a cold or flu. I get cold like symptoms I have sjogrens as well. I put my better health down to the care of the NHS and the right medication. I was lucky in that it suited me very well. Inflammatory markers I'm told are still up but not enough to cause concern.

Petrof profile image
Petrof

I work in a secondary school and I don’t seem to be getting colds or flues much or coughs for that matterJust a sniffle occasionally. But tiredness and body and joint aches yes, during the times when there are colds etc going round. I was wondering myself why it is. Maybe vaccinations. Holding my fingers crossed this will continue.

FredaN profile image
FredaN

It's always going to extremely difficult to work this one out, as it not only depends on your own individual immune system, but also behaviour.

I've not had many viruses over recent years and only caught Covid once, last Christmas. However, I haven't worked since 2010/11, I don't see family much (2-3 times a year) and I don't have a social life. I probably live the stereotypical idea of what autistic people live like to some extent. I've always washed my hands as soon as I get home from anywhere. I have all the vaccines for peace of mind - it would be just my luck to skip a vaccine then get very ill.

Betty909090 profile image
Betty909090 in reply to FredaN

Hi Suvi and FredaN,

Thanks for posting. A most interesting topic.

Have been aware of this observation for sometime.

I can certainly identify with this!

Prior to having serious lupus diagnoses and treatments in 2014 to 2016: DLE, SCLE, vasculitis and finally lupus nephritis in 2016, I did get colds and a serious flu infection which warranted an A&E admission plus a stay on an emergency medical ward. 😱This was in 2001. I’m also a type1 diabetic and have primary hypothyroidism.

However since my formal diagnoses for various lupus conditions and prior ie for around 20plus years I haven’t had flu or any cold/head colds!🥹

Current meds are: 2000mg/day MMF, 1mg Prednisolone/day, insulin, rosuvastatin, Ramipril and levothyroxine., calcium, vit B12 injections/3 monthly.

One has to wonder why?

Like FredaN I follow strict shielding guidelines, eg the 3 Cs: avoiding closed spaces, crowded spaces and close contact usually masking up when shopping at busy times. Plus attention to frequent hand washing.

Hence this behaviour seems to be working at least for me?

I’ve also stopped having the annual flu jab for the last 4 years. I’ve also never tested positive for covid so what’s truly happening?

Has this phenomenon ever been investigated properly since the Prof’s observation made in 2008? As FredaN says strict shielding from airborne viruses seems to help but do some of us have specific antibodies with good memories?

Regards to all.

0105luppyabby profile image
0105luppyabby

I too never get colds maybe a slight sore throat and tickly cough but it never turns into anything more

StriatedCaracara profile image
StriatedCaracara

There is a theory that susceptibility was brought about by people having strong immune systems that helped them survive the plague. That more people have the condition in parts of the world where the plague was more prevalent. On one side an advantage but then, on the flip side, more easily goes wrong too.

Poshcards profile image
Poshcards

new to me, I was always catching colds which always turned to pneumonia! reason not getting any at moment is because since Covid, I am still hiding away indoors and wont let anybody in my home! x

Redlady9 profile image
Redlady9

I don't identify with this at all. I get at least 2 colds per year and have had flu twice in my lifetime and COVID twice in the last 2 years. Also had lupus related pneumonitis which left me very poorly and off work for 3 months. I always have flu and COVID vaccines as I know how ill I can be. The only time I haven't had a cold for a year was when shielding.

Aethelflaed profile image
Aethelflaed

This is so interesting as it's something that I have always found to be true for me. I can be surrounded by people with colds and yet hardly ever catch them. However, on the odd occasion I do come down with something then it can be very bad and go on for far longer than it would for a healthy person. I'm not on immunosuppressants. Again like others don't want to tempt fate, but so far I've even avoided covid despite my husband catching it last year. I had a nasty bout of Pericarditis following the last covid vaccination so not keen to have another.

awareness75 profile image
awareness75

I think there is some truth in your study. The year before I was properly diagnosed with SLE, was the year of the great Thailand sunammi. I was working in a close together square sitting of 9 people. All 8 of them went down with the flu and a virus that spread through the factory, but I was perfectly fine.A friend of mine who's a scientist said that perhaps it does have something to do with your immune system; protects you to an extent of external viruses, like the common cold but makes you unwell within yourself for overcompensating if that makes sense?

Anyway, a possible phenomenon....🤔🤔

Suvi8901 profile image
Suvi8901 in reply to awareness75

HI @awareness75,

Thanks very much for your post and your scientific friend’s explanation.👏

An important correction!

This is not my study at all.

I do a lot of reading about lupus and watch many presentations. Have been aware of Professor Hughes observation made and published in 2008 so am wondering what is the 2023 situation with this, some 15 years later?

There’s always a huge push on vaccination in winter but not much emphasis on shielding so am wondering whether there has been any specific IMMMUNOLOGICAL research on this observation?

BW

nottypical profile image
nottypical

I don't remember getting 'flu (probably as I Have the jabs), but certainly get colds. I think the fexofenadine helps

Pi1410 profile image
Pi1410

For years and years I would not get the flu or colds even in years of strong flu with everyone around me getting quite poorly at home and office. I would get very tired, always assuming that it was thanks to having to do my own job and take over colleagues tasks on sick leave. I remember some years I was looking forward to get the flu just in order to get some rest, once I was feeling quite poorly with flu-like symptoms but it lasted 1 day. Then one Winter (coincidently a couple of days after a tetanus jab and being surrounded by colleagues with the flu) I developed pneumonia. After recovering and going back to work one week later caught flu from a colleague. Less than two years later it seems I got immune to flu again. I only took the flu jab once and felt poorly for a couple of days.

It is worth to point out that until then I had not been diagnosed with lupus and had not been on immunosuppressants. I have no idea what´s going to happen now that I am on immuran, hydroxy and pred in more than a year.

Jolevans profile image
Jolevans

I am also surprised by this. I don’t get many colds, but I am careful about keeping my distance from anyone showing signs of any coughs and colds. This is because if I do catch a cold I end up in Hospital with a chest infection that takes many different antibiotics and nebuliser to get it under control.

NanaFifi profile image
NanaFifi

I have had Lupus for 44 years and I get my first cold about 1st October and I’m lucky if I have 3 weeks all in without a cold until about April!! 🤷🏼‍♀️

jopo280886 profile image
jopo280886

Hi Suvi, unfortunately as I write this I am full of the flu with a chest infection to boot 🥹 I have systemic CTD and RA I get the flu and Covid vaccine every year although this year I couldn’t get it as started on new Retuximab infusion and you can’t get a live vaccine for 6months after the infusion 🙁 So given that I haven’t had flu or felt this unwell since I started getting the vaccine, I don’t get it and wham bam! So… I really do believe that the vaccine protects against at least severe flu/ covid. I would encourage everyone to get it as flu is not pleasant at all! Hope this finds you well 🥰♥️

Turquoise-1 profile image
Turquoise-1

hi Suvi8901

Neither myself with Lupus (SLE) & taking MMF, nor my husband who has RA treated with Rituximab IV infusionst + Sulfasalazine rarely get colds or flu-type viruses. If ever, they’re only mild & short lasting. Fingers crossed🤞& touching wood 🫳🪵 now!……..

Maybe there’s something in Prof Hughes’s theory? 🤔

Suvi8901 profile image
Suvi8901 in reply to Turquoise-1

Hi,

Thanks for responding!

Wondering whether some of us lupus sufferers have

“super antibodies “ to certain viruses which have never as yet been properly investigated?

Yet there’s always this drive to get vaxed every year?

There was an American prof who highlighted a case of a man who seemed immune to covid circa 3 years ago!

Ref. BBC online report!

FredaN profile image
FredaN in reply to Suvi8901

Given that the responses to this thread are mixed, I think the fact some people are more resistant to viruses than others has little to do with Lupus. It could be that the people around you have stronger immune systems, which can in turn protect you.

I can't say I've noticed a "drive" to get vaccinated aside from when the Covid-19 vaccine was available. I have the flu vaccine, but it's basically just a text message inviting me and I don't need to have it if I don't want to. I don't catch viruses very often because I live an almost hermit-like existence, but when I do I usually end up with things like lingering chest infections (I've still got post-nasal drip from Covid last Christmas).

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