EGPA and Bronchiectasis

[vivavida]

Hello everyone. Diagnosed with non severe Churg Strauss 5 years ago. Reasonably managed with pred. Rituximab, mycophenalate -no effect. Now just diagnosed with bronchiectasis and feel rotten. Diagnosis via chest consultant not vasculitis chap, so as yet, unsure of connection.

My question is... anyone out there diagnosed with both? If so how do you manage??

Many thanks and very best wishes to all. Sandy

[John_Mills Volunteer]

Could I ask where you are seen , as it is essential you are seen by doctors who have experience of Churg Strauss Syndrome ( EGPA ) as it is so very rare.

[vivavida in reply to John_Mills]

Thanks for replying John. Under Dr Jayne at addenbrookes.

[John_Mills Volunteer in reply to vivavida]

Have you talked to Prof Jayne about this new development ?

[vivavida in reply to John_Mills]

Not yet. He sort of moved me to Dr S - respiratory vasculitis specialist. He sent me for raft of heart scans etc to rule out cardiac involvement with CS. Trying now to get appointment. Quite frustrating!

[67RaP]

I have EGPA and Bronchiectasis,plus severe asthma and aspergillosis,take pred and mycophenolate plus a cocktail of other tabs,i don't cope particulary well with it all,spend 80% of my life in the house at 51 years of age,hope you manage better than me,wish you well kind regards

[Mooka]

Hi Sandy

I have MPA and bronchiectasis and am also treated by the MDT at Addenbrookes. I was referred to a physio at my local hospital to learn how to bring up the mucus in my lungs, there are a couple of things you can buy on line to help with this but I have heard varying reports on how effective these are. To be honest if I don't have an infection its not too bad just a bit of a cough. However, rituximab has left me unable to fight infections and I have spent most of the time since February last year with sinus and chest infections. It wasn't until December last year when I had a sinus op that the bug was identified as pseudomonas that it very difficult to remove so my next step is nebulised antibiotics. I also take carbocistene to help loosen the mucus.

There is a section on HealthUnlocked for bronchiectasis.

If you are still struggling for an appointment with Dr Sivasothy speak to Stella- it's very easy to get lost in the system at Addenbrookes.

Good luck

[vivavida in reply to Mooka]

Hi Mooka- thank you so much for detailed kind reply! Yes - saw Resp physio and using gadgets to shift it, hopefully!

I think I am lost in the system indeed! Call to stella great idea. Thank you!

I really hope you are doing ok! Take care

[P123sue]

Hi I've got bronchiestasis and wegners I think it's common to be along side another auto immune

[vivavida in reply to P123sue]

Thank you. I’d read that P123sue- may never know why I guess. Hope you are doing ok!

[P123sue in reply to vivavida]

Hi I Am as I'm off work at the moment, so can take it easy from my very demanding job.Iv been having a lot of falls recently and hurt my hand so I'm having chance to rest and recharge a bit.since iv been on mxt I can feel burning In my joints but the swelling has subsided and breathing is better the tiredness has not improved but I'm hopeful x