Bleeding nose and horse voice

[Main1234]

My husband has GPA and was diagnosed almost 3 years ago now. He responded well to treatment as is in medical remission. His presenting symptoms were lung related.

He is now on AZA 100mgs (reducing dose) and septrim 50 MHz daily.

Last August he started getting a horse voice and would cough until the mucous moved. His voice has remained horse since then. He also has had nose bleeds usually after vigorous blowing or sneezing. They happened maybe twice a week. They resolve quickly after a few seconds and there are no clots etc in the blood. He does blow his nose a lot .. clear mucous sometimes blood stained.

He feels well and all his blood results are ok. He has been seen by ENT who says all related to his diagnosis. What I don’t understand is if he is in remission why are there now different symptoms happening.

Does anyone else have the same or can enlighten me .

Thank you

[AmyS1]

Similar symptoms occur with relapsing polychondritis and can overlap with GPA. It maybe that your husband is not in a full remission. The clinical picture is as important as the bloods. Check that he is definitely seeing a vasculitis specialist in a specialist centre. Ask the consultant the questions.

[Leeboyp]

Hi

Sorry to hear about your husbands health. I was diagnosed with GPA back in 2003. Back then I was in a real serious situation as it took months to fully diagnose and get the right treatment. The disease affects my upper respiratory system including ear nose and throat.

Although the disease is carefully monitored and under control I still suffer from a hoarse voice and restrictions in my airway around my voice box. For that reason I have a surgical procedure that stretches my airway to open it up and a steroid injection at the same time to reduce inflammation around my voice box. It helps me immensely. It is expected that this procedure lasts between 6 and 12 months but my last one was over 18 months ago. I’m not sure if your location but this was carried out by ENT at Salford Royal Hospital near Manchester. I travel 60 miles to get the best treatment there.

I also used to suffer with bad nosebleeds but that has calmed down over the years. I also have a cracking sound in my left ear every time I swallow but that has never changed. I used to be on Aza but that has now changed to methotrexate which seems to suit me better.

Hopefully you can speak to ENT and they will be able to use a camera to assess the situation in his throat.

All the very best.

Lee

[Main1234 in reply to Leeboyp]

Thank you for your reply . He has been seen by an ENT consultant who said it was Vasculitis related and sent back to Rheumatologist .

This is certainly a disease that continues to “give”

Best wishes to you