EGPA question

[sophierenee114]

I was diagnosed with EGPA a year and a half ago. Now a lung CT scan shows a lung nodule and I will need a biopsy. I assume this nodule is a manifestation of EGPA. Has anyone else had this happen?

[May7]

Hello sophierenee, I have EGPA, which was diagnosed 7 years ago by blood tests, following unexplained breathing problems. An x-ray and respiratory tests showed that I had moderate airflow obstruction, caused by the vasculitis. Bronchiectasis developed a bit later, all caused by vasculitis. I haven't had any nodules appear though. Vasculitis appears to affect us all in different ways, and there seems to be no knowing how it will affect an individual. It also damaged my kidneys, and I underwent a biopsy for that. Nothing major wrong, and everything is under control with various medications. Good luck with your biopsy.

[sophierenee114 in reply to May7]

Thank you May for your reply. Vasculitis does indeed affect us all in different ways. It is a challenge. Very good to know you're managing your well at this point!

[s8lomon in reply to sophierenee114]

Hope all went well!

[Walkwell]

Hello Sophie

I was diagnosed just over a year ago and had lung nodules which have disappeared with treatment. I initially had a lung biopsy using a CT scanner which was ok, also a bronchoscopy (to identify the bacteria causing subsequent infections), which they also use for biopsies. I had the sedation for that which was really helpful. It doesn't last long and I managed it despite being a bit of a coward!

Good luck with it all. I am doing a lot better now after being very ill at diagnosis which necessitated the hard core treatment that led to infections which caused some damage, but it's under control now and I feel good.

Wishing you well xx

[Mingtai]

Hi Sophierenee, I had a lung nodule which they said was cancer and removed part of my lung to discover it was GPA. since then my lungs have got nodules again and was given rituximab I dont really know yet if this has worked . Lung nodules appear to be a common thing with GPA.

I hope this has been of some help

[EGPAGuy]

Hi Sophie. I have EGPA diagnosed Nov 2019. I too have lung involvement. I had a broncoscopy to look for eonsinophils in lavage in lungs ..they couldn't get to the part of my lungs effected so was pointless but radiology in any case confirmed EGPA. Surprised they wouldn't do the broncoscopy first as you are completely sedated and its painless. I think the biopsy requires a hospital stay ? Any Egpa expert could confirm EGPA on radiology in lungs so interested to know why biopsy is necessary?

[sophierenee114 in reply to EGPAGuy]

Thank you for your reply EGPAguy. My lung nodule is a bit bigger than a regular vasculitis nodule should be and my pulmonalogist is concerned so a biopsy is warranted.

[EGPAGuy in reply to sophierenee114]

I hope it all works out for you

[AndrewT]

Dear Sophie,

I don't have your 'Condition', I have ANCA Vasculitis, Brain and Kidney Damage (Transplant in July2013) amoungst 'other things'. I also have 'Module' on my Lung (left I think?), which has remained Unchanged for- in all probability- Years.

Have your Doctors/ Consultant(s), definitely, said you need a Biopsy? Clearly, if they have, then you Must have one. If not then maybe Mention this possibility- Ok if you End Up needing the Biopsy later......

Can you/ will you let us know what they 'Say', please Sophie- as 'EGPAGuy' above comments, it's maybe a little Unusual.

Sending, all our, Love and Best Wishes

AndrewT

[Roughley17]

Hi Sophie

I was diagnosed with GPA in February 2020. Initial scans showed lung nodule/s. I started treatment and went back to have a biopsy, as a day case, of the nodule but they had virtually disappeared, which suggested that they had responded to the Cyclophoshamide infusions and high doses of Prednisolone. So far (touch wood) they have stayed away. Good luck. I hope everything works out for you.

[s8lomon in reply to Roughley17]

Has it stayed away since your diagnoses?

[Roughley17]

Yes, so far.