PMRGCAuk
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Sense of smell!

You may think I am completely dotty (blame it on the dreaded brain fog) but since Christmas I can smell this strange smell all the time. At first I thought it was an old smell of cooking, then thought I had left something burning, and also used a deodoriser in the house to get rid of it,but it is none of these things and I can smell it all the time both night and day! It is as if it is in my nose! Is this yet another side effect of Pred? Has anyone else experienced anything similar, or am I becoming completely neurotic? Also do I understand from a previous comment from PMRPro that this hated brain dog is caused by Pred rather than Polymyalgia itself? IF so does that mean that if one can reduce the Pred then it will go away? I struggle with it all the time and it is very depressing.

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Hi Kathleen

I definitely have issues with smells mainly due to sinus issues. I have experienced synthesisia (Not sure if spelling) where if I see say electrical fire on tv I smell burning plastic or smoking and I smell cigarettes. To be honest I haven't even mentioned this to Dr but it is intermittent. Perhaps if it continues mention it to GP .

If I remember rightly brain fog can be part of PmR. I certainly had it bad leading Up to diagnosis.

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Thank you for your reply I don't smell anything else like you did. I don't see my doctor until March so I hope it will have gone away by then! I feel I am becoming a hypochondriac but everything is becoming such an effort although it could all be something so much worse.

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It's very hard not to think every new thing is an illness when you have to live with a long term illness. Instead of living largely ignoring body, with age and/or illness the body becomes in your face every day. After all we have to take it everywhere we go!

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Well put! 🤢

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How annoying.... I have developed a very sensitive sense of smell ... can’t bear any perfume washing powder or anything with added perfume....

I find the natural sea water based Sterimar spray helps blocked dry nose!

Isn’t it great that we can discuss anything on this forum and share our worries .....

Happy and Healthy New Year to you all ... especially the Aunties who give us all their time and good advice .....love to all ....

🎉🍷🎶

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Brain fog can be due to PMR and pred. It depends on the person. I had it due to PMR, it improved with pred. Others don't have a problem until they are on pred - and it goes as the dose reduces. It all depends.

Phantosmia - smelling things that aren't there. The wiki page is quite a good explanation:

en.wikipedia.org/wiki/Phant...

It may go away on its own - if it lasts more than a few weeks tell your GP about it. It can sometomes be a symptom of something but it isn't something I've heard people on pred complain about - although some say they lose their sense of smell.

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Thank you I will have a look at the website. The brain fog can sometimes clear as I am fine first thing in the morning until I get up and start doing things, then it is downhill! Worst are my eye muscles when I concentrate on anything they become heavy and tired, so I just have to plough on through it all.

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Have you had your eyes tested? Your vision can change because of pred - you may need glasses or a new prescription. Or just to move your specs up and down your nose as I did!

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Yes my eyes were tested earlier this year and I have had cataracts removed from both so my vision is good. It is the muscles around my eyes doing close work and using I-pad doesn't help!

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Hi Kathleen, no you are not neurotical at all.We have a strange disease and small things can be serious and big things are nothing, so how do we know the difference? Hope the smell fades away for you soon. Since pmr/pred I often have the sensation, I am smelling weird, unfamiliar, and have a shower. Helps for a short time. So take heart and hope for better times if you can ( the same goes for me)

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Thank you for your encouragement - I don't think (hope) I smell, I will have to ask a (close) friend!!

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Hi,

Do you have any other nasal symptoms such as nosebleeds, nasal discharge or pain?

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No none of that I just can smell this strange burnt smell!

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I find the nasal rinse,( netty pot, ) works well for all things nasal and sinus. Dont know if it would help your problem, but i have very few sinus issues using occasional rinses. It also keeps my head colds from turning into full- blown sinus infections.

My sense of taste is whacked out, i no longer enjoy the taste of many foods that were previously favored , example, strongly flavored veggies like broccoli and cauliflower. Unfortunately, i still love cookies😋😋

Happy New Year, Jerri

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I limit myself to the saline dropper that is used for babies. I had just about got rid of blocked sinuses then I got flu and back to square one. I think mine is connected to acid reflux/gerd too as got worse when I tapered off the ppi. I will designate a week maybe 2 to daily dose of antacids and see if there is an improvement.

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Thanks for your comments I think I will just have to put up with it - could be worse, but I just wondered if it was a common effect. Happy New Year to you too!

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Over the 5 years on Pred. and 6 years of PMR, I have lost sense of taste and smell and also had other smells that I can't place and had distorted tastes too. Who knows what is caused by what , there are constant surprises around the corner! As poopadoop says, we are so much more aware of our bodies than we have probably ever had to be before!

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Thanks for all the comments

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Yes, I do! Since diagnosed early last year I have an intermittent smell of cigarette smoke. It drives me mad as it’s one smell I hate. My sense of smell for other things is not affected.

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Thank goodness I am not completely alone,and maybe not quite dotty either!

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Strange , in bed at night I often smells cigarette smoke but nobody in the house smokes !

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I did have that smelling smoke even though I didn't smoke. Then I started smelling waccy baccy and realised it was coming from next door. I do live in a terrace. Those neighbours moved but the new one smokes outside the front door and it drifts into my house depending on wind...have you checked with neighbour lol.

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Non smoking neighbours both sides, I put it down to someone in the spirit world

Trying to contact me ? But then I'm A believer !

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Same here, I was convinced there was someone under our window smoking.

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Burnt toast. It only happened once. I was in my car driving to a shop so I know there wasn’t a toaster anywhere near me.

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I think it's worth putting up with as it could be so much worse!

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Others will know if this smell problem is prednisone related but if it isn't, you might be interested in reading what Oliver Sachs has to say on smell hallucinations... Very interesting

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Thanks I'll look it up

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I kept smelling 'exhaust fumes' in the house and elsewhere. I was on a PPI (Lansoprazole) but since I've weaned myself off that, I don't smell them any more.

I don't think it's related to my pred dose, as I've been down to 4mg then up to 10mg for a flare and now back down to 7mg.

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Thanks I'll learn to live with it!

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Some years ago - pre-PMR/GCA - I lost my sense of smell following a cold. The first symptom was a constant smell of burning and petrol and a general distortion of all smells and loss of taste. I was given a series of tests to see if this was likely to be permanent; this involved recognition of the smell of nutmeg, cinnamon and other strong spices which indicated that this was temporary although it did last for over a year. The tests were given when I lived in Germany and I don't know if they are available here. The joy when I finally walked past a florists' shop and could smell flowers was amazing! Do hope you recover soon.

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Thank you, at least I am not completely mad and it could be something so much worse!

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Hi Kathleen

I found that pred really affected my senses , particularly when I was on 40 mg. Salt tasted really salty, hot drinks didn't feel very hot, cold drinks felt tepid. Although hearing tests proved that I have very good hearing, I still find I can't hear above background noise-I am constantly embarrassing myself at school. The ENT specialist said it may be because my brain is not working as it should to interpret what my ears are sending.

In 2011, before pred days, I had sinus surgery and sinoplasty because I had a bad smell in my nose, at the top, particularly when I bent forwards. An ex-ray showed a blocked sinus in my cheek which was full of white stuff which would trickle down my throat and make me cough. The opening to this sinus cavity was enlarged and it's all healthy now.

If you have no symptoms alongside the smell it may just be your brain/senses being affected by pred, but maybe you have a sinus problem.

Take care

Ali

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Thank you for that

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Hi Kathleen, this is what I found: Phantosmia (phantom smell), also called an olfactory hallucination, is smelling an odor that is not actually there. It can occur in one nostril or both. ... Olfactory hallucinations can be caused by common medical conditions such as nasal infections, nasal polyps, or dental problems.

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Thank you for all the info. I don't think I have any nasal problems and hopefully it will just fade away.

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Since I flew to San Antonio Texas the first week of January, I can not get the smell of the trip out of my nose...sorta like jet fuel exhaust and the rug shampoo they used on the floors in the hotel....I even thought it was on my clothes from the trip, but they e been washed..gradually fading I think but I still smell it daily. Strange....

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Interesting! The smell I get started at Christmas and I can still smell roast goose!!! At times it fades then returns, it could be something worse...

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