Can't Taste Food after Chemo and steroids

[Red-head44]

I have taken chemo tabs for 6 months and come gradually down from 60mg Pred to 25mg now, and have lost a lot of taste when eating. Am now off chemo [6weeks ago] and on Azathioprine tabs. I thought my taste might have returned by now. Does anyone know how long it might take to return?

Still coughing a bit of blood up in the mornings. have WG in right lung and nose.

[Suzym2u Moderator Vasculitis UK]

If you are still coughing up blood it might mean your WG is not under control , have you discussed this with your consultant? Oral Cyclophosphamide is not usually recommended as the first line of treatment it is usually IV infusions. Has any one suggested Rituximab?

[BronteM]

My sense of smell and taste is definitely diminished. I'm now on rituximab and it's recovered a bit, but not completely. My best test is chopping onions; when I was on methotrexate and cyclophosphamide I could cut several up without my eyes watering at all. Now they do a bit, but nothing like they used to!

[PMRpro]

Sorry to be a downer - but my husband's sense of taste was severely damaged by chemo (about 9 different drugs in various cocktails) some 22 years ago - it still is not really there in the "old" way. It very much depends but it may take a very long time.

[weeonescoop30]

Hi red-head44

I saw that you replied on a Scottish specific post and wondering where in Scotland you are. I'm newly diagnosed with GPA and to be honest not coping that great and could do with a friendly ear to chat with if at all possible. many thanks Roz xx

[Red-head44 in reply to weeonescoop30]

Hi Roz

I am in Dumfries & Galloway. Sorry I'm not on facebook but if you give me your home phone number I'm happy to give moral support, but don't consider myself any kind of specialist on this disease i'm afraid.