ILD & scleroderma

[cheryldn]

So ended up in hospital on last bank holiday Monday as my breathlessness was so bad! My BP & oxygenation were within range. Have had numerous bloods taken, chest X-ray, CT scan, ultrasound of lungs - all ok, no infections. Awaiting Bronchoscopy next week. Everything is suggesting inflammation rather than infection/fibrosis. Currently taking mycophenalate & prednisolone since Easter which I know is not a long time but in that time my symptoms have worsened. Now talking of cyclophosphamide treatment. I’m obviously shielding at the moment due to Covid19 but as I am new to this do you ordinarily need to shield when taking cyclophosphamide in ‘normal’ times? Many thanks for any advice.

[momo17]

I’ve been offered cyclophosphamide too but so far haven’t taken them up on it because of the side effects. There is no advice to shield whilst on it but when my consultant didn’t give me much more advice I researched it n it said probably things like concerts, perhaps travel abroad might be out for the 6 months but maybe someone who’s actually been on it might advise you better. I’m currently shielding too so certainly wouldn’t want this for my life!

Best wishes

[MissusTee]

I'm not on those particular meds, but I have had steroid injections in the bum. I do think if I was you I would keep away from people with any kind of respiratory infections as you are more likely to catch them and on top of everything else it's likely to make you more unwell.

Just a thought as it's happened to me, at the age of 51 I've developed hay fever for the first time, on top of scleroderma and other autoimmune conditions it did make me feel really unwell, I'm wondering if something similar has happened to you, particularly due to the heat.

[cheryldn]

Well I had my Bronchoscopy yesterday, what an experience!!😬 My lungs were washed out & samples taken to make sure there is no infection deep in the lungs before I start cyclophosphamide IV infusions later next week. I just hope this treatment works as mycophenalate hasn’t so far & considering my breathing issues only really started this year it’s been quite rapid how I’ve deteriorated.