Vocal cord and airway

[Agoodenough]

Hi does anyone have GPA until now only affecting Vocal cords and swelling to airway with Rasping voice ....It's a Recent diagnosis and wondering if anyone has had treatment for this or had this type of GPA.

[Hidden]

It's not uncommon to have a sub-glottic stenosis and lesions on vocal cords with active GPA but unlikely it's the only area affected in your son. These areas usually recover once the disease process is halted by appropriate immunosuppression but sometimes need surgical intervention if the vasculitic process causes breathing difficulties or permanent damage. I see from your other post that your son is due to see an ENT specialist at the Hammersmith. Whilst there are many eminent specialists out there, it's vital they have experience in diagnosing and treating vasculitis in accordance with clinical guidelines.

[Agoodenough in reply to Hidden]

Ok thank you. He has been referred to Charing Cross hospital for the throats/sinus problems and they seem to know about vasculitis and seem competent. My son has had scans and tests to check if vasculitis is anywhere else and it appears not at the moment. (Fingers crossed)We are seeing a rheumatologist locally (ashford, Kent)although haven't had many appts but being monitored by blood tests. I am not happy they know enough about vasculitis. So I am going to ask on the next appt if we can be referred to Hammersmith and see someone there that has more knowledge as locally they seem to me to deal with arthritis.

[russellk3]

Hi I also have gpa with what sounds like a sore throat for a voice and subglottic stenosis I have had laser surgery and dialation on my windpipe which gave instant relieve the surgery was totally pain free I go for three monthly check ups to monitor the stenosis it's slowly returning but I can still manage to work the croaky voice was my actual first symptom I also had lung involvement,kidney and joint pain but have recovered it takes time I was diagnosed in November 15 and have managed to return to a normal life I take 10mg of prednisone reducing next month and 150mg azathioprine and these seem to keep all under control all the best for your recovery

[Agoodenough in reply to russellk3]

Russellk3 that's really helpful. Thank you for your reply!

[SusanCh]

Hi I also have GPA diagnosed in 2004. I have sub glottis stenosis of airway as well as lung, ears, nose involvement. I had a croaky voice but had treatment at Charing Cross Hospital at Hammersmith by best Specialist, Mr Guri Sandhu although I live in the north west of England. He specialises in trachea problems & has lots of GPA patients. He works with Professor Charles Pusey & Alan Salamma. I have had various medications, Rituximab & lots of steroids, but have managed to get off the steroids now by slowly reducing over a period of time.

Sue

[Omil04]

Hi Agoodenough ! Yep I have GPA affects my voice plus airways, I am having Chemo for the past 3 months. I hopefully when the last one is done things will get better. I hope things will also improve for you . Regards lorraine