Sense of smell

I am so pleased my friend told me about NRAS, I am now a volunteer at my local group where I have made some lovely friends and I don't feel so alone with RA anymore. I have picked up so many tips from Health Unlocked, I have ordered a 7 day pill organiser as I have had some close shaves with taking the wrong tablets at the wrong time.

Anyway what I want to know is has anybody ever experienced this, I have times when I can smell cigarette smoke. I have stopped asking my family if they can smell it too (as they can't). My husband and I have never smoked. I did Google it and it scared me a bit and I didn't know whether to mention it to my doctor or not (in case he thinks I'm cracking up).

Thank you in advance for any replies.

28 Replies

  • I would say you are ok in my book I get things like that all the time , I am psychic and have clairsentience ,its something that can connect your sense of smell to your memory ,but that's just my experience

  • Thank you junebee for your reply, very interesting, it is something I notice happens when I am stressed or if something is bothering me.

  • Hi Mary Yes I have experienced this as well. My sense of smell & taste has been compromised for two-three years now. Initially I thought it was due to one of the RA drugs, so stopped it for a while but it didn't improve.

    I was investigated by the ENT drs who thought that it was due to a severe sinus infection. This is usually one of the causes, the other is often related to a head injury.

    There is an organisation called The Fifth Sense, google it & you will find out some more information. There are only 3 clinics in the country dedicated to problems of taste & smell. One in Norwich, one in Guildford (where I go) & one in Birmingham. ENT drs aren't geared up to deal with it even though it is one of our main senses.

    I have been on some treatment which I think may have helped as it is no where near as bad as it was. At first I wasn't able to eat a lot of foods as they tasted & smelt so bad!

    I still feel that it may be linked to RA as several people have talked about it on here. However there is little research around in any medical discipline!

    Let me now how you get on & maybe we can raise the profile of the problem!

  • Thank you PaulineS, I will now look into it further. I have not enjoyed my food for sometime as it doesn't taste the same anymore. Wishing you well.

  • I have problems with my sense of smell too. It seemed to disappear about seven years ago (and before I was diagnosed with RA) I mentioned it to my dr but they didn't seem concerned. It's an issue as I can't smell when food is 'off' - my daughters saved me once when I was about to eat a fish pie (freshly bought) which they said smelled so bad they were almost sick. I can smell some things now, like you, I could smell cigarette smoke on a newly-bought sofa bed which is strange.

    Let me know if you find anything else out.

  • Hi there, are you having regular blood tests? I ask because twice now I have lost my sense of taste and partially smell when my liver function was becoming compromised. The first time it was because of Methotrexate and the second it was Leflunamide. It came back after stopping the meds each time (not immediately but definitely after a month or so each time). I'm wondering if it might be something similar for you?

    I hope you can get to the bottom of it anyway.

  • I wonder why it is cigarette smoke smell. Thank you Harpey, hopefully as people read this we will raise awareness.

  • That's interesting happyh67, my LFTs has been high for sometime (I have been having monthly bloods done), they even sent me for a Liver scan but the rheumatologist doesn't want to take me off MTX as it is working for me.

  • Hi Mary, fortunately my Rheumatologist decided my liver was more of an issue and stopped Mtx and Lfl as soon as possible, so I've been on a biological therapy (Enbrel) for a few years now which seems to be keeping a lid on things. I'm also on Sulphasalazine, Naproxen, thyroxine and Omeprazole with Solpadol for added assistance when necessary! The Enbrel really made a difference and I'm praying I never have to come off it, or another biologic if necessary. I don't know if you're on one but it might be something to discuss with your rheumy instead of mtx and see how you go. I found it really depressing not being able to taste or smell food, which is just what you need when you've got this debilitating illness - something else you can't do!

  • I take MTX and Omeprazole as well as medication for high blood pressure and paracetamol twice a day and folic acid. It is something I will take up with the rheumatologist when I see him next. Thank you.

  • My taste and smell have altered too. I've been smelling cigarette smoke, my GP took a look and thinks I've an infection inside my nose so I'm getting some antibacterial cream from her. Sometimes it smells like dust, and just before I was diagnosed I would smell damp and drove everyone demented looking for something they couldn't smell. I also have trouble with knowing if food is off, I've been known to drink sour milk with no idea. I can still taste and enjoy food but it's not the same.

  • Thank you Sailaway for your reply, I think it is something I am going to have to mention to my GP. As much as I wouldn't wish this on anyone I'm glad I'm not alone.

  • Here is the link to Fifth Sense

    There are various groups of the web too.

    There are obviously several of us who are affected!

    Cigarette smoke is one of the main smells that a lot of people with this problem experience.

  • Thank you PaulineS, I can't tell you what a relief it is to me, I have been worrying so much about it and didn't dare mention it. I have suffered from depression in the past and thought people would think I was cracking up if I told them. Knowing I am not alone gives me the strength to take my worries further.

  • Hello. I lost my sense of smell about three years before I was diagnosed

    But I belive I had RA at the time, the docs just hadn't figured out what was wrong yet. My nose always feels stuffy. I thought maybe I had a deviated septum but they count find any reason why I lost most of my sense of smell. It's not med related for me since I wasn't I can't meds four years ago.

    This is very I retesting others aslo have this but I do not smell cigarettes, I basically can bearly smell anything except strong odours.

    I wonder if your nostrils and inner nose can get swollen due to RA and this causes the issue. iDK but it's very irritating indeed.

    ( sorry on mobile and can't fix spelling errors)

  • Thanks for that Hobbits. It is one of those things I hadn't put down to RA but wonder if there is a connection, the more I read the more I think there might be.

  • Hi I can smell smoke and my sence of smell as gone I don't enjoy my food known more I also feel full and have to have sweet things i to are on mxt and emral injection's one's a week all so on a lot more MED's so it mit be take care.

  • There might be something in this ktk51

  • Do you think its the MED's I go to the hospital on the 3nd DEC I am go in to ask .

  • I don't know but it is worth asking, would you mind letting me know what they say at the hospital please?

  • Hi yes I will maryf60

  • Hello

    If you smell smoke when none is there See your GP ASAP

  • Why do you say that borderriever, should I be scared?

  • To smell smoke can be the first sign of Stroke.

    Although possibly if you smell smoke it could be your living in an industrial area.

    Remember I am not a Doctor, so I have to reserve my views for those of a medical professional.

  • Sometimes when taking NSID AND DMARD the bloods chemical make up changes and causes bruising that is painful to touch. This is one of the reasons for your bloods to be checked.

    This happened to me about 2 years ago when they tried to change my NSID, they reverted to the original medication and the bruising stopped.

    Sometimes medications can also cause tummy troubles as well this can sometimes dark stools,

    Again I am no Doctor


  • Why? Ktk51

  • I suppose due to the strong medication we take there are quite a lot of side effects we don't know about. We just have to try and take care of ourselves.

  • I suppose we do

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