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?
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nicholson27
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I was diagnosed with GPA in April 2017 and like you it all started with sinus, ears and nose . After 4 months of 40mg of prednisolone I partially lost taste and smell especially coffee and red wine which both tasted like pepper, pleased to say as the steroids reduced and I came down to 15mg my sense of taste returned . My experience with ENT is that they check the passages for inflammation but in my case they say passages are clear but deeper in the ear I get crackling , whistling and buzzing that comes and goes. I have a steroid nasal spray 'Avamys' which helps but no solution is offered.
Hope this helps and your senses return quickly as mine did on reducing the steroids.
Thanks for the reply. I’m pleased to hear that your loss of senses was temporary and can only hope that mine turns out to be also. I too gave hearing involvement with eustacian tubes that don’t work properly leading to a ‘head under water’ feeling all the time and quite bad tinnitus in my left ear.
Prednisolone wise I have reduced from 85mg per day to 5mg over the last couple of years so am on a low enough dose now to be fairly sure that this is not causing the loss of smell.
To quote just about every ENT doctor I have met, will have to ‘wait and see’.
I have had asthma allergy and rhinitis problems for about 10 tears and had lost my sense of smell for 2 and 1/2 years and my hearing was dim before becoming very ill and being diagnosed with churg Strauss syndrome. Before diagnosis ENT doctors had no explanation or offer of a cure. However, the use of prednisone after diagnosis of CSS seemed to cure the nasal and hearing problems. I was diagnosed 6 months ago and down to 10mg of prednisone now but sense of smell is still ok.
Thanks for your reply. Interesting to hear that your ENT doctors were as effective as mine. Am also in prednisolone but hasn’t helped with the sense of smell. Can only wait and hope.
My problems are almost an exact copy of yours except I was diagnosed with GPA in June 2014 but had been suffering severe nasal and ear problems for the previous 12 months. Unfortunately I think because of the lapse of time in being diagnosed and starting treatment it seems to have done permanent damage to my hearing in both ears and the only time I get relief is when I have grommets inserted (have had 3 lots so far and am on waiting list for 4th).
The initial treatment and medication did seem to help with all other symptoms but had quite a bad flare earlier this year which started everything off again and although started on quite high dose steroids again and two infusions of retuximab, have had terrible problems again since with sinuses, nose, smell and taste like you, and, like you the ENT specialist doesn't seem that interested and has offered no solutions only use of a nasal spray, although he is willing to try and improve my hearing again with some grommets. (I feel like I have had a permanent cold for the last six months - my nose either running continually or completely blocked making sleeping extremely difficult!). His only advice has been to continue with the treatment which is actually prescribed by my rheumatologist in a different hospital, and neither seem to be in touch with the other! I find things very frustrating on times. I am currently taking 11 mg of prednisolone daily (reducing very slowly) 20 mg of mtx weekly, as well as the other usual cocktail of drugs.
I do find that my sense of smell and taste does improve slightly some days but other days seem to disappear. Would love to know if you get any joy.
Sorry if i am not understanding properly but I also get times when just my left ear goes deaf. I get a cotton but but Take most of the cotton off then I have a good try and cleaning and the amount of crap that comes out is embarrassing to even write about. As I say please forgive me if I’m slow on the uptake but it seems that this disease can affect both nose and ears from reading this. Do you think this is why the left ear is filling up with this wax like stuff please ? I have been to my GP who gave me sodium bicarbonate drops but they did nothing for me.
I clean my ears very thoroughly and to the point where the practitioner nurse says I go too far and that people should really wash their inner ears, did I hear that right ? Once I get rid of as much of this gunk as I can my hearing improves.
Can you please tell me what the grommets are and what they do please as music plays a major part in my life and my hearing is what worries me most. I know it sounds daft especially considering my eyes are affected but my world would be very empty without my music. I write poetry and songs too. I had to give up my 2 choirs are this darned disease has robbed me of the abi,it’s to hold a note as I get out of breath so quickly now.
Wow, 4 posts in one day. This is becoming an habit
Its not actually wax that causes the problem with my hearing - it is the fact that the WG/GPA has damaged my eustacian tubes which makes it impossible for the fluid (gunk) to drain from underneath my eardrums. When drainage tubes (grommets) are inserted this allows for the process to occur again and my hearing then returns to normal. Unfortunately they work their way out and then I have to revert to hearing aids again. If this is not the same problem you are getting and if yours is more of an intermittent problem then it may be more difficult to rectify. I would think the only person who can give you advice would be an ENT specialist and would advise you to stress to him/her how much your ear problems are affecting your life.
I sympathise greatly with you and wish you good luck.
Thanks for your reply. Grommets were suggested for me by one ENT consultant but I was then told that they would not be a good idea by 2 other ENT doctors so didn’t end up having them. Smell wise I fear that as with your hearing it is due to the disease causing damage over several months before effective treatments so have to face the possibility that it may be permanent.
If I get any joy with treatment that helps I will certainly let you know.
My vasculitis was being called GPA but now I notice the copy letters say generalised ANCA positive vasculitis as it seems that my lungs are the only thing badly affected and my kidneys only at infrequent times but I also have lost smell and taste and this was prior to Rituximab. I have to rely on my neighbour to tell me if the house smells ok as I have become paranoid and have 7 plug in air fresheners around the house. Don’t get me wrong, the house is clean but I have a cat and ergo a Cat tray but I change it daily.
Hopefully and once the drug kicks in for both of us, we can look forward to having a nice meal that we can taste. I have empathy & sympathy with you.
I hope we both have a better 2018.
As an aside I heard the specialists talking about a new drug that could be in the final stage of human trials. I was earwigging. I didn’t hear a name but it was letters followed by a number.
The way I see it as long as I can stay around the better chance we have of maybe getting closer to a cure or something that stops our immune systems from attacking our own body.
Good luck and wishing you a much better new year but you are not alone. I get small periods where my taste and smell return and I fully take advantage of those times as they do not last long.
I too have seen my condition described as ANCA related systemic vasculitis. I asked my consultant at Addenbrookes if my GPA diagnosis had changed but she said no, it is just another way of describing the general condition.
I too have lung involvement but very few kidney problems. The initial attack went for lungs and prostate which I’m told is unusual but not unheard of.
Have been on rituximab every 4 months for 2 and a half years, prednisolone from 85mg down to 5mg currently and gave had 16 lots of cyclophosphamide so it’s anyone’s guess if something among that lot has caused the smell problems but my gut feeling is that the problem is due to damage done to the smell receptors. I was badly effected with nasal damage, perforated septum etc so probably the damage is irreversible.
As you say though, all the while we are still around there is hope as research is going on and you never know what may come along.
Hi I’ve lost my sense of taste n smell seen 3 doctors had 2 operation one of which damaged my septum.They seem unconcerned just say it tough.I have other health issues and am waiting to see a vascularise specialist.I really sympathise with you it’s a really depressing condition.
Hi, it’s now 2 years further on and sense of smell and taste hasn’t returned so it’s obviously permanent. I still get the odd appointment with ENT doctors but as you say, they just say nothing can be done so I have given up on it altogether now. Just to add insult to injury, another flare up killed the optic nerve in my left eye so that one is now blind and the high steroids caused a cataract in the other eye which they had to operate on.
It is indeed a depressing condition but if you just take things a day at a time and try to find some bits of enjoyment where you can, it is manageable. Considering the alternative any life is better than none.
Good luck to you and I hope you get some improvement soon.
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