Hi all and merry Christmas.
I have had GPA since mid 2015. Gone through all the usual treatments including prednisolone, rituximab, and cyclophosphamide of which I’ve had 16 infusions as my disease has proven very resistant.
Somewhere along the way my sense of smell has gone. As taste is mostly reliant on you having a sense of smell, that has all but gone too. I can sense sweet, sour and salty but that’s about it. I did suffer particularly badly with upper respiratory tract / sinus problems during the initial onset of the disease and during a subsequent flare so would think that quite a lot of damage has been done in the nose.
Have been referred to ENT doctors at various times during this disease at 4 different hospitals. Not specifically for the smell problem but for the whole ENT areas of involvement affected by the vasculitis. I have to say that there is a common theme among these ENT doctors whereby their first response is to refer to what I can only imagine is the first line in the ENT training manual and say “there is nothing we can do” All of the doctors in other areas, pretty much without exception that I have had experience of have been excellent and very willing to help and try things or else refer on if they can’t but not so with ENT. Don’t know if anyone else has found this or have I just been very unlucky with the doctors I have been referred to?
Anyway apologies for my little rant, I would be interested to hear if anyone else has experienced losing their sense of smell / taste and if they ever got it back or got any treatment for it?