My wife was formally diagnosed with SLE in 2019 after struggling with her health for many years.
One the curious things about how SLE impacts my wife is how it impacts the lungs. She had two spells of hospitalisation and very recently a bad flare which is ongoing.
The curious thing is it has been categorized as non allergen asthma. The lungs become very tight with difficulty breathing. We are advised it is within the lung and caused by inflammation which is triggered by infection and then lupus kicks in.
My wife is on hydroxy, aziothprine, steroids plus a heap of other stuff.
Anybody else have similar please ?
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jimbo1605
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Yes mine has been on going since 2014.my breathing deteriorates very quickly not always infection related can be a stress response.thankfully i have a brill gp who i can contact when my breathing goes.ive had all the tests under the sun but now they want a diaphragm ultrasound. I've done pulmonary rehab and physio. I'm not asthmatic and have never smoked . I didn't have any breathing issues until I became unwell.Steroids are the only drug that settles my breathing down again which has lead to me becoming steroid dependent. Kind regards SML x
Like KSP I also take a prophylactic antibiotic 3x a week and have chest cts.
Lung inflammation is not infection but many medics confuse the two terms! However they are not mutually exclusive.😱
Hence to be constantly on antibiotics when the condition is a lupus lung inflammatory condition rather than an infection is surely lazy medical malpractice leading to antibiotic resistance and superbug creation?
Hi,Yes my usually deteriorates with infection has she ever been diagnosed with brochiatisis or any from of lung condition related with lupus because mine was.
I have been on continuous antibiotics to prevent infection to my lungs 3times a weeks at the moment. I was on daily with rational antibiotics then switch to the current 3times a week. She should be under a lung specialist so that they can do a lung function test and monitor her and put her on antibiotics to prevent it from happening again
I spent many years suffering from constant ‘lung infections’ which were put down as this as I was a teacher at the time. Eventually in 2015 when I had other symptoms, my GP, who is fab, I have to say, said he thought it was Lupus so sent me dermatologist, cardiologist and respiratory dept. My lung function test showed that the problem was there. I have lupus damage to the base of both lungs. I was immediately given mycophenolate and hydroxychloroquine and prednisolone which has calmed everything down. I didn’t need an MRI but I have a CT scan every two years and a lung function test annually. I see both rheumatologist and respiratory specialist annually. Hope this helps.
I feel out of breath occasionally but it's very strange cause it's always all of a sudden 😞 I'm not seeing anyone for my lupus but need to take a rest when I feel dizzy or funny where I don't know why or what is causing it. God will look after us.
Sorry that your wife is currently having a bad flare, how is she doing today?
I was going to attach a few publications about lupus and lung issues, however betty909090 has this covered.
Have you had a second opinion about your wife's lung issues, this might be something you could try if you haven't already? the link below is useful if you are unsure -
Hi I was diagnosed with lupus in 2002. I went into hospital with chest pains and short of breath. I had pleurisy. I was put onto steroids and hydroxy and that was the medication I was on for 15yrs including blood pressure meds blood thinning and pain killers. For the last 5 yrs I have been getting a biologic called rituximab which is good but just recently I have had pneumonia twice. My breathing was really bad and I now have an inhaler as well as all the other meds.
Yes, 2006 I was hospitalised with pleural effusion and pericarditis. Since then on azathioprine and steroids, plus hydroxy which I've had since 1992. Have breathless days, no particular reason , and chest pain . Weirdly, it's never bad if I have a cold , so its just a lupus inflammatory reaction. Covid didn't make it worse.
Sounds a bit simplistic but I find deep breathing helps short term.
Such a strange illness we have . Hope your partner gets some answers. ❤️
I have pulmonary fibrosis because of lupus. I also have tachycardia.
I do smoke, so that doesn’t help the situation.
Until recently though, I could run up the side of a mountain with zero problems and a fag hanging out of my mouth. Now I struggle with getting up a flight of stairs or putting on a pair of jeans.
I queried lupus (for various reasons) around 20 years ago, but my then GP wouldn’t test for it. It took a chronic cough, tachycardia and ct scans and a wonderful pulmonologist to diagnose me. If I’d had treatment back then I likely wouldn’t have the fibrosis now.
I was hospitalised the first time I had covid because I couldn’t breathe and my heart went into overdrive too. I’m still relatively young st 46.
Does your wife see a pulmonologist? I’m lucky that my local hospital (GWH Swindon) has a joint rheumatology/pulmonology clinic, all because my rheumatologist has a specific interest in lung issues caused by immune disorders.
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