dall05

Has anybody out there had a diagnoses, developed severe life threatening, acute interstitial lung disease, myositis and respiratory failure secondary to a mixed connective tissue disorder (anti-jo 1 positive)? . Also Fibrosing Alveolitis has been mentioned. I dont know what it all means but I've been living with it for just over two years now and seem to be holding my own. Exercise, prednisolne 20mg daily, and mycophenolate 2grams daily, home and portable oxygen is what I am treated with. I've been told its not exactly COPD but I still do the weekly breath easy exercise class which has been brilliant. Under exercise conditions my sats read low 80s on 6 litres oxygen and around 93 at rest off oxygen. Ive had to give up work but can still get around at a steady pace. Is there anybodyelse out there with a simular condition?

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  • Hello, I cannot answer anything for you but I think if you go to the top of this page and click on theBLF blog then you will see Jo's picture. Click on her and send her an email with your question. They are a lovely team and very friendly and may be able to shed some light on your concerns.

    They have helped me, I wish you well.

    Jane

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