Loss of sense of smell

I suddenly realised about 18 months ago that I have lost some of my sense of smell. This started with bleach and cat pee (!!) but has gradually got worse until when I was out with my Mum a couple of weeks ago I realised I couldn't smell the flowers she was raving about :(

Similarly my sense of taste is disappearing.

I did mention it to my GP and she offered a steroid nasal spray but I had a severe reaction to one of these many years ago so declined.

It is really beginning to upset and worry me.

I have my first rheumy appointment this week (lots of symptoms and 2 positive ANA results 18 months apart) and will mention it to the rheumy, but I also googled it (as you do) and found articles that say it can be an early indicator of autoimmune and particularly lupus.

Does anyone else suffer this, and how has it been treated? Was it successful?

Thank you so much, I haven't actually been diagnosed yet but finding the possibility rather scary.

ShellyB xx

9 Replies

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  • It could be lupus but it can also be a number of things that affect the brain. If it is lupus, or other autoimmune disease affecting the brain (e.g. Vasculitis) then treating it, could improve the symptoms.

    I have assumed here that the diminishing smell/taste is due to brain but it can be due to the nerves or the organs themselves.

    I'm not a doctor, so don't take this as a given. You need to see a neurologist in the first instance. He/she will be able to assess the extent of the problem and the likely causes. I have assumed you've had no head trauma, nor stroke but the neurologist will be able yo look properly at everything.

  • P.s. Your rheumatologist will probably refer you to the neuro, so make sure you mention this at the appointment.

  • Thank you for putting this on. I also have lost a lot of my sense of smell. I do have SLE but thought that losing my sense of smell was something to do with me breaking my nose about 10 years ago even though losing it only started about 4 years ago.

    I will now be looking into this more. I have never told a doctor or my rhummie but will now

  • I have had no smell or taste since I had my daughter 22 years ago , just recently been diagnosed with lupus , after reading this wondered if it is connected ?

    Not got my final diagnosis yet , had a head scan so its not nerve damage .

    any thoughts ?

    Tracey

  • I have lost my sense of smell and taste, I have a diagnoses of sle and sjogrens. Yesterday I saw the ent consultant to discuss my recent ct scan. He said, nothing nasty has show on the scan (good news) but you do have sinusitis and this is to be expected as you have autoimmune diseases! The lining of the nose becomes inflamed as it thinks nasty germs are going up my nose :) He has prescribed a steroid nasal spray.

    I too, years ago used one which help keep the nose clear but stopped as GPS kept saying I shouldn't use it for so long. At that time I didn't know I had sle or sjgrens. I can only assume because I stopped using it, it has all gradually flared up again.

    Hopefully the consultant will be able to put your mind at rest as to whether you have lupus or something else. Try not too worry too much, whilst I have these problems they don't affect my lifestyle greatly, it's just an inconvenience sometimes. On the bright side, I can clean up nasty smells without a problem ;)

    Hope you get the answers your looking for. X

  • Chris, your comments were a revelation to me! After 20+ years of fairly well behaved sero neg Lupus, it suddenly went berserk for 2 years in 2011/2. I experienced a huge surge in joint & muscle inflammation, weakness (muscle and eye), nerve inflammation and various respiratory issues and, if that were not enough, severe nasal ulcers and 'hay fever'. The latter is, in fact, the nasal inflammation that you describe and which I simply could not work out what significance it had in the disease process. My sense of smell is also in overdrive and triggers breathing problems these days too. The nose ulcers fluctuate a bit but are over 0.5 cm across in places and have been there for nearly 2 years - very unpleasant. What a bizarre condition this is. Is there anything it can't do???

  • I was diagnosed with lupus in 2012 after getting pancreatitis for the second time and no explanation for it. a student doctor got to the bottom of it after numerous tests. When I backtracked, my problems started approx 8years earlier. Iwas told I had asthma, I kept telling them I hadn't and that's now been proven. My limited knowledge says it can strike anywhere it likes in the body! I also get sores in my nose, joints hurt some days really bad while other days not. My breathing isn't great as I've also been diagnosed with mild lung fibrosis. Fatigue is the biggest nuisance. When it strikes I have to sleep as I have no choice :D I still work full time and active as much as before. Nothing will surprise me with this condition. Let us know how you get on.

  • I have the opposite problem. My sense of smell is in overdrive. I have become sensitive to nearly everything. My throat gets tight and I becone flu-like.

  • I think I have both. I noticed my sense of smell has diminished. I worried I was getting Alzheimer's since I read if you can't smell strawberries, it could be an early sign. I have then since ignored by inability to smell some things. But, at the same time can still smell my dogs stinky butt.Ha! Wish that was the smell I couldn't smell anymore. I remember my mom had a decrease ability to smell things ( she died from colitis at 48 inflammatory disease) whereas my older siblings told me it was because she was a chemistry major in college and lost her sense of smell because of that. Interesting how stories we were told are different than realty. I choose to be aware of it , but not dwell on it. I am already a very fearful person, and can't take anymore bad symptoms. Hope you find answers and that helps alleviate your worries.

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