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Thread: Bad Smell and taste During GPA

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    Default Bad Smell and taste During GPA

    Hi I was diagnosed with GPA 4 weeks ago but have had symptoms for about 12 weeks now. But for last 8 weeks have developed very bad smell and taste problem especially with food items with flavor and smell.
    I doctor has just started me on PREDNISONE 60MG daily ABF orally.

    Is it due to sinuses?? but my ENT says there is no problem with my sinuses; coz all looks good when he sees by hand held scope. Should i go for an MRI.

    is this normal in GPA??

    Does one ever recover from this smell/taste condition??

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    Default Re: Bad Smell and taste During GPA

    Nothing is normal with GPA first of all. My sinuses thus taste are wiped out. Pred could cause that, does wonders for the appetite! My ENT not only took a hand held scope, but rammed a TV tube up there and showed me the damage...hmmm, that wasn't fun, but it was exposing as I could see where some GPA effects did damage. Not sure an MRI would do any better than that up there. As for recovering, mmm, maybe...sometimes...I hope so...nope, permanent damage there. Best to you...it's a long road and sometimes bumpier than we know.

    PS: I hope you're getting experienced help from the docs, many have never seen this disease in action.
    Last edited by Dirty Don; 09-23-2021 at 01:20 AM.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Default Re: Bad Smell and taste During GPA

    Quote Originally Posted by arj View Post

    Is it due to sinuses?? but my ENT says there is no problem with my sinuses; coz all looks good when he sees by hand held scope. Should i go for an MRI.

    is this normal in GPA??

    Does one ever recover from this smell/taste condition??
    GPA started with me in the nose, and it got completely blocked - couldn't taste or smell almost anything back then.

    For a very long time I felt my taste was off - like there was this sparkling wine we'd often get, but it no longer tasted good. Fortunately I liked spicy food and smokey whiskies, which still tasted awesome

    The ability to taste did gradually improve - its kind of impossible to say if its as good at it was pre-GPA. Still I do like some sparkling wines now, even if I didn't want any for the first few years after getting dx'd.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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    Default Re: Bad Smell and taste During GPA

    I think GPA is different for everyone from what I can tell. There is SO much that is unknown and so many variables! I was diagnosed one year ago based on a biopsy of a 3.8cm mass that appeared in my lung sometime after May 2020 but I only had one blood marker (not full on ANCA positive). My body has always been resistant to medicine and things affect me a lot different than most people. I'm actually still not in remission after the Rituxan infusions back in May and have to wait until after my body gets rid of that to try something else. My main symptoms last year were sinus issues/nose ulcerations, unexplained weight loss, extreme fatigue and a lot of pain among other things (I also have Sjogrens, Raynauds, IBS, too many others LOL). My taste was actually fine until the infusions! Now I can only drink plain water (none of the Crystal Light/flavored things) and I eat things mostly with cinnamon and herbs. There are lots of things I used to love that I either can't taste, taste bitter, or makes me want to throw up now. For me, I eat things that have a texture that doesn't offend me as odd as that sounds. As for what I've been told by doctors, they "hope" my taste comes back once the Rituxan is out of my system sometime after December but they don't know. Honestly, I've been making the best of it for months now and assuming it is gone for good just so I can mentally prepare. I find if I eat while I'm watching tv or distracted from really focusing on the food, I can almost forget that I can't taste anything. I truly hope your taste comes back but, if not, you're not alone and hopefully everyone's tips/tricks/input can help. I also hope that people who are having weight loss don't get the loss of taste because it has made things SO much more difficult to try and not lose more let alone gain any! I was about 98 lbs two years ago and now I'm 88 which is the bare minimum for the Evusheld shots that I need! Again, mind over matter really helps get me through the fact that I don't enjoy food/drinks much like I used to...I just trick my mind by distractions! LOL Best of luck to you and everyone!!!

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    Default Re: Bad Smell and taste During GPA

    Quote Originally Posted by arj View Post
    Hi I was diagnosed with GPA 4 weeks ago but have had symptoms for about 12 weeks now. But for last 8 weeks have developed very bad smell and taste problem especially with food items with flavor and smell.
    I doctor has just started me on PREDNISONE 60MG daily ABF orally.

    Is it due to sinuses?? but my ENT says there is no problem with my sinuses; coz all looks good when he sees by hand held scope. Should i go for an MRI.

    is this normal in GPA??

    Does one ever recover from this smell/taste condition??
    My smell and tasteproblems have disappeared since I went to a medicinefree remission.
    From time to time however, I have flare-ups.

    I can tell when a flare is coming up, because my ability to smell is suddenly distorted then.
    Everything smells like cardboard in such a period
    Living with WG/GPA since june 2010...

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    Default Re: Bad Smell and taste During GPA

    Hi Arj,

    Sorry you have been diagnosed with GPA, but glad that you have received a diagnosis, because now you are on the right path for treatment.

    I lost my sense of smell, about 10 years ago, and it has never returned, even though I am in remission.

    I've found, that when you smell that "dirty old socks/mouldy smell" that happens, is when there is an infection brewing in the back of the sinuses.

    Try and do some sinus rinses, to make sure that all of the dried blood and gunk, is cleared out on a regular basis.

    Good luck in your treatments, which hopefully includes more than just prednisone, in the future.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Default Re: Bad Smell and taste During GPA

    Quote Originally Posted by mishb View Post

    I've found, that when you smell that "dirty old socks/mouldy smell" that happens, is when there is an infection brewing in the back of the sinuses.
    Very well put, mishb!
    I recognise that particular smell from my first years since diagnosis.
    I was not yet capable to remark infections in my sinuses.
    Nowadays I can, and rinsing indeed helps a lot to prevent infections.
    But when that is n't enough, medication is required.
    Living with WG/GPA since june 2010...

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    Default Re: Bad Smell and taste During GPA

    I have experienced this!

    Noxious smelling breath, bad taste and a white cast on my tongue (and post nasal drip, although I still deal with this sometimes). My Maxillary sinuses were jam packed with infection/build up from GPA. A few rounds of anti-biotics did not cure this chronic sinus infection. I ended up getting Maxillary sinus surgery in 2019 to get my sinuses cleared out and widened. This cleared my sinuses right up and I have not had a reoccurrence of this icky/noxious smell/breath.

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