Loss of Taste and smell

[torfruda]

Hi does anyone know why I’ve lost my sense of smell and taste 5 years now.However very occasionally it comes back for a few days then disappears.Im currently on list to see vascularise Doctor

[lesleyg]

Will be interested to hear what others reply. I’ve just put a post on the Behçet’s website about a trial of a drug called Secukinumab that I’ve been on for six weeks. One of the minor side-effects is my sense of smell is coming back. Cheers Lesley

[Main1234]

My OH has lost his sense of smell and taste he has GPA that appears to have settled in his sinuses. Strangely enough he can taste / smell some things and it tends to come and go . He feels ok with this, just another strange symptom of this chronic disease.

He did see an ENT consultant who was quite dismissive and said it was part of GPA !!

[egre]

I have GPA and since diagnosis 4 yrs ago have altered smell and taste. If something has a scent like soap it smells like an odor and not pleasant. Oranges also smell different. Taste is manageable. Another quirk and something else to live with

[Anner205]

I have GPA and my sense of smell went about five years ago. It used to return if I was given antibiotics for anything but that no longer happens. My sense of taste is also virtually non existent. I get sweet, salt and sour if it's extremely sour.

[Chipper03]

I have EGPA and lost my sense of taste and smell gradually over the 10 years or so while I slowly became more ill with it. Senses would come and go. The last 6 months before diagnosis, when I was very ill, I had no taste or smell. Once treatment started with steroids the senses came back. Now 11 years later I’m on a low steroid dose, and taste and smell are there but quite dull. When I have to increase steroids for any reason they improve, so I’ve always associated it with steroids, which I assume reduce inflammation but I don’t know this as a fact.

[Blue_feather]

How very interesting! I came across this post by mistake as I was looking on how to remove myself from the Vasculitis community - only because I have very recently been diagnosed with 'likely' limited scleroderma and not, it turns out, Vasculitis, but I do also have ANCA positive antibodies. A bit odd, I know.

I lost my sense of smell and taste when I became hypothyroid (with autoimmune thyroiditis) two and a half years ago. GP wanted to wait until my thyroxine levels had stabilized, but referred me when I nearly burned the house down - twice.

I was examined with a scope down my nose and I had a CT scan - both revealed nothing other than a post-nasal drip (another Scleroderma thing, apparently), and the consultant dismissed the loss of smell as being linked to any of my autoimmune disorders. Instead she said this: 'It is actually quite a common thing, and you probably lost it being exposed to something as simple as bleach or other cleaning products. By the way, since it has been two years since you lost your smell, it won't be returning.'

Common? Really? Not sure I believe that one!

Anyway, I'd be interested to know how the Secukinumab works out for you Lesleyg, and also how loss of smell is linked to Vasculitis.

[Investigator1]

Hi Tortuda, I was diagnosed with GPA in December and well on the way to recovery now (I hope) I have an opposite diagnosis, when my ANCA Levels were high and I was taking high doses of steroids and undergoing doses of Cyclophosphamide my smell was ok but my taste was about 20% of what it should be. Since then as my steroids have been tapered and I have moved to Azathioprine it’s improved, it’s taken me about 8 weeks for my body to get used to Azathioprine as I was feeling sick and going off some foods but that’s improving too. My specialist in Middlesbrough is fantastic, really caring and is always available and it’s helped me through it, I have had no support or help from my local Surgery, they are hopeless. Sorry to throw in a Cat but it’s been the opposite for me.

[lisat96]

I lost my senses of taste and smell years ago due to sinus polyps and Aspirin Exacerbated Respiratory Disease. They would always come back with steroids or sinus surgery then gradually go away again. When I started treatment for EGPA, they came back to stay with the steroids. Now that I'm on a low dose of steroids, those senses are less intense, but I can still tell if food is spoiled or if something is burning on the stove. Interestingly a brisk walk seems to help improve them for the rest of the day as well now.

[ElaineRH]

I have EGPA and have the same issue. Apparently sinus issue part of the condition. I have had nasal polyps removed twice since 2003. Always the same pattern - loss of sense on smell then taste. Regrowth of polyps then surgery to remove. Just “seen” the consultant and he said too early to operate but to come back when (not if) symptoms worsen. Steroid drops help with this and injected steroids (IV or IM). I am on a biological drug which hasn’t done anything to break the cycle.