Pneumonia and Azathioprine/Prednisolone - LUPUS UK

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Pneumonia and Azathioprine/Prednisolone

LottieLou96 profile image
4 Replies

I had managed just over 2 years since my last case of pneumonia after i swore by the 'onion trick', to treat resp infections.

I've been having maybe a month and a half of apnoec and SOB episodes which were finally improving after a few weeks of antiepileptic medication, Keppra. But as the dose increased, I could feel, (i know it sounds weird), but could feel my immunity just going non existent.

And so a sore throat, led to ear infections, to URTI to yesterday a temp of 39.8C, (my usual 35.2), chesty cough, chest pain, and feeling like id been whacked by a sledgehammer. That's the thing. intermittently my immunity is even worse than its baseline, and I seem to get infected by my own organisms per se. We all have bounds of bacteria on us and in our throat and gut, which in immunosuppressed can cause infection. And i could feel it slowly brewing till it hit me today. Thats without being on the pred or DMARDs, which i am due to start tomorrow.

Thats the double edged sword I guess, as some of you know. Immunodeficient and immunocrazy (autoimmunity). So my WBCs usually hover around 1.9, and Neuts usually around 1.0, but they are probably down at nothingness, as I can feel my body cant fight it off. Thankfully I pleaded for Amoxicillin and will hopefully get it today or tomorrow otherwise I may be in bother. Nay going to throw pred or DMARDs in the mix till I hit baseline again I reckon. But it is a bit of a problem. Becausing adding immune modifying/suppressing drugs in the mix when your good immunity is so poor its a risk for sure.

Plus, my work is going to be sick of me being sick soon haha. Especially when I have been treating people with neutropenic sepsis or in septic shock all week. Its never the best combo, but I am extremely careful.

Well take care guys, but yeah, I guess I will have to see. I was finally getting use to breathing again and being present and good at work.

But we persevere! I am still feel blessed in many ways. And i am blessed to have managed over two years, esp during covid without pneumonia.

BW Lottie xxx

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Spanielmadlady profile image
Spanielmadlady

Hi lottie.i managed 3 1/2 years without a lung flare until Nov last year when I was admitted to hospital with pneumonia and pleurisy. I spent 6 months reducing prednisone down to 7mgs only to have another pleurisy flare in May. I'm now having flare no3 after only managed to reduce my prednisone to 25mgs. my consultant increased my mmf from 2 gms a day to 3 gms in Feb.there seems to be no apparent trigger for these flares so I assume it's just a bad spell 🤷‍♀️. Xx SML xx

LottieLou96 profile image
LottieLou96 in reply to Spanielmadlady

Oh that sounds like a nightmare, SML

It's a real fine balance with everything, isn't it.

Reminds a little of those with chemo at work with neutropenic sepsis, they just don't have the immunity they need and so easily get ill.

But thankfully some earlier intervention, for once. So I can't complain.

Normally I rock up to ED with sepsis before I can get any help.

But it's tough stuff. I suffer from alot of pleurisy and RTIs l, but had done well, but I have been doing too much at work. A hectic weekend in ED. Plus I know the risk of having to treat patients with severe sepsis and illness.

Take care x

Spanielmadlady profile image
Spanielmadlady in reply to LottieLou96

Certainly is a fine balance it doesn't take much to over do something and we pay the consequences very quickly don't we. You do amazingly well to do your work in such a hectic place ...I take my hat off to you. All we can do is rest up. Take it easy xxx

LottieLou96 profile image
LottieLou96 in reply to Spanielmadlady

Aww, I never feel I do enough really. More sick days then I would want but oh well. I've only got two hours to survive at work and get to clock off for the rest of the week and recoup. Seen as I live in a box, it's the one thing I hopefully will keep managing with difficulty to do. Bc it's worth every moment tbh. X

Thanks for care 😘

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