annmarie

[Airfry]

hi. I am newly diagnosed with polymyositis and ILD (caused by the polymyositis). I have had chest infections over the past three months while on mycophenolate. Where as the ILD cough is dry and non productive I have been ver wheezing and the cough is very productive. I feel everything is happening at the top of my chest area below my next? Does anyone know what I am talking about

thank you

[ruablue]

hi Airfry

Thank you for sharing this - I too have ILD and myositis (along with another overlapping autoimmune disease). I am also on Mycophenolate - this is an immunosuppressant so sadly can make us more prone to infections, including chest infections- I’m just getting over a bout of Covid - it can be very frustrating. It’s important to keep your medical team informed of these as they may have some approaches to manage these. I hope you manage to shake the infection- rest and take care of yourself.

[Jo-Goode Administrator]

Hi,

Firstly discuss with your lung consultant whether you should pause treatment while on antibiotics & this may help to clear the infection. Unfortunately lung damage can cause Bronchiectasis, where the airways become widened & mucus can collect giving an increased risk of chest infections. I had a very bad run of chest infections & long running pneumonia (clocked up 150 rounds of IV antibiotics) during 2016/17 & finally diagnosed with Bronchiectasis after a referral to a specialist lung centre (got nowhere with the general hospital lung consultant). This diagnosis became a game changer, as management was put in place of a medication called Carbocisteine (which reduces the amount of mucus produced) & daily lung clearance & now have far more support in place if problems arise. I have the added complication my immune system has remained extremely low despite stopping oral immune suppression in May 2016, so as well as constant lung infections also had repeated cellulitis (skin infections) so have remained on oral antibiotics to combat both. Apart from contracting covid almost 2 years ago, when placed on 2 types of antibiotics (also high pred & IV Sotrovimab) have not had any further chest infections, quite some achievement with children in school/college!

Regards, Jo

(Myositis UK Trustee)

You might also find it helpful to join the Myositis community group I run on facebook, which has more members with lung involvement than this web based group. facebook.com/groups/themyos...