Anyone else had Lupus Pneumonitis?

I had a very severe 'chest infection' and 'pleurisy' for 7 months... I finally got to see a lung specialist (at the end!) and they tell me it's Lupus mimicking pneumonia! Is it rare or common with Lupus? (It was the factor that got me diagnosed, just yesterday, by my lung specialist of all people.)

They didn't really tell me much else, as the pneumonitis has gone for now thanks to steroid bombardment....but....if you've had it, did it recurr? My chest infections have been getting worse and longer every year and I'm scared :( my lung capacity is also 25% lower than it should be due to scarring :(

I see the chest docs again in 6 weeks so I suppose I can ask them about recurrance then... just wondering if anyone else had any experience.

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  • Hi, sorry to hear you are feeling so bad

    When I was first ill, I just slept alot of the time and had a terrible time with my chest. I was seeing a professor for 7 months and had endless courses of antibiotics, which did no good at all, then my knees started to swell and I got joint pain, eventually I went to see a local iridologist who diagnosed straight away that it was an immune problem and prescribed medication, the prof was shocked when I saw him again that it had cleared, I then was referred to a Consultant with my joints who diagnosed Sjorgens and Fybromalegia but I have more Lupus symptoms and recently had a mole taken off my face and the biopsy showed that it was lupus related. I still am prone to chest infections but try not to take antibiotics if I can as if I have too many I end up with thrush in my mouth. I take drops from the iridologist every day and if anyone round me as any bugs at all I take Echinacea. Good luck, I hope you soon feel better, the trouble is we never know when and where it will strike, just have to make the most of the good days.

  • Thanks... I have a lot of Lupus symptoms, I was diagnosed with Chronic Fatigue when I was 13 and since then GPs have put down ALL my symptoms to CFS/'in my mind' (except hair loss and sun allergy - still waiting for first Derm appt) but the lung docs took my full history, tested me and said it's Lupus. So I'm referred to a Rheumy too... the thing that's bugging me this week (!!!) is my dizziness, it's driving me mad.

    The chest thing is the scariest thing though, I felt like I was barely existing for those 7 months, it was a struggle just to be alive. I'm so glad it's gone, but what if it comes back?! :(

    Thanks for taking the time to answer me, sorry you've been through the mill as well..

  • Yes each time I go into hospital, I end up with lower lobe collapses and pneumonia symptoms, recently sent home with an increasing crp even though scan showed the problem on my chest. Two days later saw had to see gp and yet more antibiotics and steroids.

  • Oh no Medic, is there no specific treatment that gets rid of it once they know it's Lupus?! I can't go through life having a 7 month chest infection every year :(

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