Newly diagnosed

Hi I have been diagnosed with SLE in last couple of months I also have Antphospholipid syndrome and they think SJogren syndrome Last year I had pulmonary embolism which I had ct scan for and it came to light I have Sarcoidiosis. I have Psoratic arthritis which was diagnosed about 4 years ago I have had pleurisy in September and I have it again now is this common for people with SLE. Or is it to do with sarcoidosis. Has anyone else had problems with pleurisy

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  • Hi there Paula - sorry to hear about all your diagnoses but to quickly answer your question, yes, pleurisy is very common with lupus. Here are a few links for you if you've not already seen them and I'm sure other people will post replies to you here about their own experiences with it:

    lupusuk.org.uk/medical/gp-g...

    mollysfund.org/2015/10/lupu...

    hopkinslupus.org/lupus-info...

    At least you now have a confirmed diagnosis so hopefully you will be getting the right meds to bring things under some kind of control. x

  • Thanks sjogiBear I m new to all this and not sure what illness causes what I have appointment next week at St Thomas and I think they are going to start me on Hydroxychloroquine have you tried this just wondered if it would help

  • Others on here will be able to give you personal experience - I've had pericarditis but not pleuritis myself - from the Lupus UK page the meds they mention vary according to the problem experienced . . .

    "Lupus associated pleuritis responds to NSAIDs in mild cases or, where severe, may require increased dose corticosteroids. Anti-malarials are useful for refractory cases. Colchicine may also be useful in acute pleuritis."

    So it might well help being on the hydroxy in due course :)

    How has your pleurisy been treated so far?

  • Hi Paulakdean,

    Pleurisy is common in lupus - estimates vary that between 30% and 60% of patients develop this problem at some point. More severe forms of this problem cause a collection of fluid, pleural effusions, usually starting at the base of the lungs but on occasions spreading up to cover a larger proportion of the lung surface. The fluid can constrict the lungs causing shortness of breath. Pleurisy may be strongly suspected from the clinical history and examination, and confirmed on a chest x-ray. It usually responds rapidly to a short course of steroids.

    If you need more information about lupus we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

    We also have our full range of publications available to read and download at lupusuk.org.uk/publications/

  • Hello Paula & welcome. You've got some great replies.

    I'll just add that so far my cases of pleurisy have been successfully treated with antibiotics. Treatment depends on your individual profile, e.g. My respiratory system is compromised due to my early onset did & Sjogrens + lifetime of various types of respiratory infections...also I don't have or make pneumococcus antibodies...so am at low threshold for antibiotics (inc I've antibiotics).

    As your sarcoidosis overlaps with SLE, I wonder if your lungs tend to be more compromised generally, like mine

    Hope you'll let us know how you get on

    🍀🍀🍀🍀 coco

  • Thanks barnclown that's the trouble not sure what illness is causing what. But I think the scarring I have on my lungs from sarcoidosis is causing a lot of my problems Iam on antibiotics they seem to be working I don't feel so bad the pain is bit better And I m sure I have had SJogrens for ages I was told my dry mouth and swallowing was due to reflux but reading about sjogrens it made sense of some of my symptoms I had never heard of it till I had my results from st Thomas hospital but I had never really heard of lupus so on a bit of a learning curve I do find you learn more from people who have experienced it.

  • Wise words! Glad you're here 😘🍀

  • One medication that it might be worth discussing in view of your Sjogrens diagnosis is carbocysteine which is used to reduce the viscosity (thickness) of secretions. This makes it much easier to cough up phlegm which can accumulate in the lungs and cause problems. I use this drug and it has very few side effects - it's usually used in people who have cystic fibrosis.

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