Lupus flare

[Flows]

Hi has anyone experience a lupus flare which was tiggered by a suspected infection? Ended up in hospital but they couldnt detect where the infection / virus was dispite full blood tests, urine tests as well as blood and urine culuture tests. Pretty scary.Thanks

[Championbaker]

This is how most of my flare ups are triggered. Although in my case it’s usually a respiratory infection. It can be really frightening but I’ve noticed that if I keep a note of how I’m feeling when I journal I can detect patterns and sometimes I can intervene and rest etc before things get too bad. I missed it once and ended up with a bout of sepsis and kidneys shutting down. Hope this helps and get well soon

[posthinking01 in reply to Championbaker]

Hi there - sorry to hear that - I agree - that’s what Lupus is really - an overactive immune response - a cytokine promotor which needs dampening - best to keep away from anyone with any bugs if possible - not easy I know - I wonder if any of you are on steroids which helps dampen the overactive system but then poses other problems of course - take care keep well !

[Flows in reply to posthinking01]

Hi thank you for replying im on mmf and been placed on steroids for 3 weeks. Also will start mapacrine which im not looking forward too but fingers crossed. Please keep well and look after yourself too.

[Flows in reply to Championbaker]

Hi thank you for replying it really helps. Lupus is pretty scary i hope you are well. The journal is a great idea.

[MusicalFurbaby]

Yes, two years ago I had a massive flare triggered by a simple cold. All viral swabs and COVID-19 tests came back negative. I too was in and out of hospital, tested within an inch of my life. They spent months scanning me and never found a cause for the severe breathlessness I was experiencing. After six months it resolved, but it was pretty scary and I worry about it happening again. Rest assured, you are not alone! It seems that living with chronic illness, especially when we are immunocompromised, means this stuff can just happen with little or no (apparent) cause. Take care and all the best to you

[Flows in reply to MusicalFurbaby]

Hi yes it is very scary im glad you recovered and thank you for sharing your experiences with me its really helpful. I hope to be on the mend. Thank you

[MusicalFurbaby in reply to Flows]

No worries Flows, keep us posted with how it goes x

[Flows in reply to MusicalFurbaby]

Thankyou

[posthinking01]

Hi are you on steroids may I ask ?

[posthinking01]

Hi sorry to hear that - what symptoms did you experience may I ask ?

[Graystar]

Yes absolutely! Most of my flares are triggered by throat and upper respiratory infections. Rest helps but can get annoying during the winter as that’s all I seem to be able to do. Sorry to hear of your experience.

[Flows in reply to Graystar]

Thank you for sharing its helps to know other peoples experiences

[posthinking01 in reply to Graystar]

Yes me too when I was Lupusy as I call it - I then realised that if my throat or upper respiratory areas get dry then they are more vulnerable to getting infected as possibly mucous membrane is not covering that area as it should to protect if from dryness. Still to this day I do not have a heater or aircon on in the car and a fan in the hot summer have to be way away from me - standing underneath one of those blowers as you shop is also a no no for me. I actually had to give up the job I loved at a major airline because someone in the office was always cold and kept putting on the heating system which was just above my head - chest infection after chest infection or sore throats - I am also careful with dust when cleaning or hoovering for the same reason.

[soul22]

HiI do have mini flares with any infection

Oh my unable to detect infection despite blood cultures maybe they need to do cat scan.

Any sytpoms or just fever

I'm just out hospital myself ecoli kidney infection sepsis in blood.

UTI was start of it except wasn't aware had a UTI( urine infection)

All best prayers they locate source of infection I'd try writing down sytpoms to aid drs investigation.

So sorry your flaring it was the ceiling lights started my flare butterfly rash came up.

[Flows in reply to soul22]

Hi soul22 thank you 4 replying i really appreciate you responding i hope you are ok. Its very scary. Please look after yourself and take care.

[soul22 in reply to Flows]

Your welcome 🤗 thanks

[Suvi8901]

Hi,

A “lupus flare” ? 🧐 Complicated indeed.

This can mean different things to different lupus sufferers in terms of degree and what is actually flaring up in our bodies:

Skin? - red rashes, all over, face? back, arms, hands, legs, torso?🥹

Organs? Kidneys, liver, brain, heart, lungs, connective tissues, muscles?🥹

Symptoms? Increased fatigue, joint pain, muscle pain?

“Suspected viral infection”?

Which one/type? Covid 19, measles, chickenpox, shingles, mumps, flu etc🥹

Hence with lupus we need different and specialist teams of docs: dermatologists, nephrologists etc NOT just the rheumatologist?

With viral infections as stated above the docs need to test for signs and symptoms eg there are classic ones for measles, mumps, rubella, shingles etc LFT /RAT for covid 19 or SARS-cov-2 tests.

Bacterial infections will require antibiotics.

Are these medics working hard enough for you and us?🥹

Correct diagnoses, treatment and medication reviews (to keep the lupus flare well managed) are highly necessary!!👆…before things get worse!

Regards

[Flows in reply to Suvi8901]

Hi Suvi8901 thank you replying and although i wouldnt wish this invisible illness on anyone to helps to know yr not alone. Yes they tested for a few things including covid but nothing. I was placed on antibiotics via the vein which seemed to work. I never had a butterfly rash but did this time and a rash on chest arms and legs. Ive been placed on mepacrine now as hydroxchloroquine affected my skin. But im not even sure that the mepacrine is the right med as its mainly used for skin lupus, which i dont have my lupus test to affect my joints swelling and fatigue i mean if it helps with those issues great uf not whats the point. Its just a losing battle at the minute. But thank you 4 replying it honestly helps.

[Suvi8901 in reply to Flows]

Mepacrine? Yes u’re right. It’s an anti malarial drug.

Usually prescribed for cutaneous lupus.👆

Many on here are prescribed MMF, Mycophenolate mofetil, an immunosuppressant which targets our T cell synthesis and therefore in some way prevents our immune system from attacking healthy tissue. I’m on 1000mg/day tablets, reduced from 3000mg/day due to my lupus nephritis being in remission.👆👌

I’ve also got SCLE.

ASK about MMF. It’s an established drug for lupus and gives good results without the hassle of iv infusions in hospitals etc.

Regards

[Flows in reply to Suvi8901]

Hi, yes im on mmf as 7 years ago lupus attacked my liver. Thankfully no side affects to this but it doesnt really deal with any of other lupus symptoms. I hope the mepacrine does the job at least controlling joint pain and swelling and if helps with the fatigue even better. Take care and thankyou so much for responding it is appreciated greatly.