PMRGCAuk

What IS that smell?

What IS that smell?

OMG... It's me!

I cant believe I am going to write about this, but my fingers are uncontrollably, moving across the keyboard, at a rate faster than sound, so I guess I am!

Apologies in advance!

Okay... Confession... I have never used deodorant or antiperspirant in my life. Well maybe when I was like 15-16; I tried using whatever that era's equivalent of Teen Spirit was, but it was just to be cool and it was just a phase.

It wasn't a Women's Lib thing or a rebellious, hippie decision... I just never got into it. I had good personal hygiene habits and frankly just never had the "need." And before you ask, "yes," that fact was confirmed by family, friends and lovers throughout my life... thank you very much!

I think it may be because I didn't clog up my pores early on, with harmful chemicals, my body just didn't produce an overly noxious natural odour. Oh sure, if I went to the gym, or that time we went cycling in Provence in July, I got a little "ripe," but I was NEVER offensive.

So... you can imagine my "shock and horror" (after taking a lovely, shower before bed last night; and doing NOTHING except sleeping all night) when I awoke to discover that there was, shall we say... something very rotten in Denmark.

Is this the PRED????

Is it the PMR/GCA?

Has anyone else experienced this problem?

Is it, God forbid, just me???

Has my body, after almost 64 years, decided to again turn against me in another perverse, insulting and repulsive way? Giving me two auto-immune diseases, that have turned my life upside-down wasn't enough... I now have to worry about SMELLING and offending people?

Give me a F*CKING break!

Aunties! Uncle Mark! Anyone!!!! Please tell me this is normal... tell me it's caused by high doses of Pred and as I reduce further it will go away!!!!! Tell me it's just a glitch in the matrix!!!

HELP PLEASE!

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I have unlike yourself I had to use deodorant but I sweat dreadfully at night so by the time I get up my hair neck underarms and chest soaking wet! I'm sure it's from the predisinone but very unpleasant as you can imagine, I'm slowly tapering down on 15m go to see my rheumy Next week as like you I'm hoping as I go down it will stop, I've never been or felt so good since I reached 15m but it's been very hard I'm concerned about moving further down the scale, wish I could just stay at 15 even with the sweating !

I will let you know what he says! But I'm sure our friends on this forum will help us out?

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Thanks for your honesty... and for even responding! Dreadful subject I know, but it is what it is!!!

I'm always cold and haven't experienced the profuse sweating problem that people talk about... so I'm a bit confused by this parfum du corps! Unless I'm a "closet" sweater!

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Well I can’t leave you in a pool of whatever it is, all on your own! Certainly PMR and Prednisalone make you sweat more. I imagine also that the chemistry of sweat changes on a high dose of Prednisalone. I expect it’s something like that. The Internet is alive with talk of strange smells. I could feel myself getting sucked in, like you do. When my children were ill, I would notice what I called a “ poorly” smell sometimes. I wonder if all illness has a smell but we don’t really get intimately involved with smells anymore but wash them off and cover them up ASAP.

I wonder about the sense of smell too - perhaps it’s more acute. I am the only one in my family who can smell my neighbour’s barbecue practically before it’s lit. Interested to see what other responses you get. It may well be a thing.

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Thank you Dear Jane! For coming to my immediate rescue! I love that your children had a "poorly" smell. I'll bet that is a real thing! We just aren't in tune to it.... not sure why my nose has become more keen all of a sudden, although poopadoop asked about nose spray, which oddly I have just starred using again after several months of not using. I only hope I've not had this issue for moths and just didn't realise it! 😳😬😷😧

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Have you heard about the woman who can identify people with Parkinson's by the way they smell? It led to work on a test to identify the substance that causes it:

news.nationalgeographic.com...

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OMG!!!!!

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There are animals that can identify diseases too - dogs can detect bladder cancer, African rats are trained to spot TB from urine samples. The rats do a first screening which takes minutes so they get a quick result. Then they are confirmed and a few are found otherwise but it takes a lot longer.

theaustralian.com.au/life/w...

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There was an article about her in my Dundee newspaper. I went to school with her and her husband. She is currently off to an underdeveloped country to smell children with TB. Her husband was a consultant and she smelt the Parkinson’s years before it was diagnosed. She thought he wasn’t showering!

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It is well known that dogs can tell when someone has cancer, diabetes, or if someone is about to have an epileptic fit. It is widely believed that they do this through smell.

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Utterly fascinating!

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I think it’s pred. That is, I didn’t notice it pre pred. But maybe between 20 and 12ish??? I sometimes noticed, not a stink, not body odour as such, just a smell that wasn’t my norm. But as showers were my friend, I was quite happy to have 2 a day. No-one else ever mentioned it, so who knows, maybe my sense of smell altered?

Which reminds me, the past week, when cleaning my teeth, I have been smelling the hot water really intensely. A vaguely ‘machinery’ smell with floral undertones. I’m thinking of bottling it as the latest perfume. I might call it ‘PeRfuMe’.

I always used to use deodorant (getting up close and personal with patients). The creamy sticks, never sticky roll ons or sprays. I gave them up with PMR, it was one less thing to do each morning.

One thing worth checking for just in case is Candida infection (thrush). This can occur in all sorts of places, oral, p.v., ‘jock itch’, athletes foot. Under boobs if there’s a ‘crease’ of skin. Anywhere that is damp or sweaty.

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OHHHHH GREAT! I see a voyage of discovery in my future, as I go about sniffing out places of possible offensive smells! Thanks Soraya_PMR, I knew I could count on you! Oh, and by the way, I think I will pass on your new business venture; ‘PeRfuMe’. Good luck with it though. xxx

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That’s funny. I have a water filter and I keep thinking the filter needs changing, it smells to me like goldfish water that needs changing. Everybody else says it’s fine.

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I had a proper run in with water filters some months back, trying filters from many shops, complaining that my tea tasted of chemicals. Hubby didn’t notice any change. Drove me mad as I love my cup of tea. Eventually bought a new filter jug. Still tasted cr@p.

It’s mostly resolved, but drink more herbal teas now, particularly ginger which is flavoursome enough to cut through the weird taste.

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I can also smell chlorine when I run my cold water tap fast. This maybe accurate though. I heard that, allegedly, our iniquitous Sheffield City Council had sold our wonderful Peak District water to London. I wouldn’t be a bit surprised. So lord knows what’s in our water supply.

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Yes yes but it smells like wet dog to me. Folks thought I was nuts.

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I am a total stinker these days. It drives me mad when I smell the weird smell coming off me. It's a combination of things I think. Certainly pre diagnosis of diabetes I was soaking wet like I had just come out of the shower. Since pmr the smell has changed to a fusty burned smell. I just try and ensure my sweat hits clean skin. I have always been relatively hairless so it doesnt stick around there. I have used anti bacterial shower gel which helps in the summer but then you have to take care you don't get thrush.

At your dosage of pred your blood sugar might be spiking and adding to the PMR smell. I have had to give in to deodorants having previously used Crystal underarm helper. My only solution has been showering if I go out of the house. 😣😲

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Dear Fellow Stinker! Thank you for your honesty! This is a definite body odour smell... which I recognise, but have not had to deal with. Hmmmm? Blood sugars as of about two weeks ago were in normal range, after previously being a bit high, so they were actually re-checking them. I shower everyday, in the evening before bed.... I don't wake up hot and sweaty, so don't believe I seat during the night. (?) It is the weirdest thing! Thanks for weighting in!

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No probs. Me and my friends have discussed how body odours of all kinds seem to change as you get older. They don't have PMR etc so could be anything. 😂 have you changed your diet? Washing powder? I sometime wake up and don't feel as though I have been sweating but a look in the mirror at my medusa like hair says I must have been sweating and tossing and turning.

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Nope... no changes. Have been eating pretty much same diet and taking same supplements much since diagnosed in November/December. Same washing soap, same shower soap... Like I said, I may be a "closet" sweater... I'm going to ave to do some sniffing and some investigative middle of the night work!

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When I used a sinus spray I used to smell weird smells all the time. Sinus issues can also make you smell things that aren't there. GCA and sinus issues can stroll together.

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WOW! OMG!!!! I just started using my prescription sinus spray again a few days ago!!!! Are you saying i have smelled like this a along ... I just didn't smell it???

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Did OH confirm the smell? If not then sinus spray made me smell a silo type smell everywhere.

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I will be asking OH to confirm immediately. He had already left for work this morning...

" Ohhhhhh, Honey... Can you do me a favour? "

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😂😂😂

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I am using a sinus spray, well who knew?

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PIL will tell you that it can make you smell strange things.

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There's definitely something in the sinus spray theory, it's only like when you get a cold you get all sorts of smells coming from the sinus's until the cold has disappeared - and after. I had nasal surgery a year ago and I could smell all sorts of what seemed like chemical smells, drove me nuts but went eventually - as we haven't got smellyvision I'll say that I don't think you smell it's in your nasal passages!! get your OH on the case...

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You may not have changed your soap - but the manufacturers may have...

And the sinus spray MAY be what is making you smell things "wrong" - just a thought.

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Good thought.

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Oh Poopadoop, you have cheered me up no end as I sometimes get the 'fusty burned smell' but haven't asked OH, or anyone else for that matter, whether he can smell it! It comes and goes and I have tried to work out when/why/how but have failed... it only happens sometimes and vanishes again. Pred?

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Yes it is not there all the time but obvious when it does arise. I am wondering if it is the coated pred. I could smell it on Sunday when I topped up to 10mg to cope with long weekend hence took 2x5mg coated. Last couple of days back to 5mg coated and 4x1mg Uncoated and no smell. I will be keeping an eye or nose on it!! Not glad you have same issue but glad someone recognised it. 🌻

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Definitely keep in touch over this smell thing... I'm on 7 1/2 so.... watch this space

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One thing I have noticed regarding smells is that perfume disappears off me .... within a few minutes it doesn’t stick at all, including body lotions.

Anyone else?

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Thats a weird one, huh? Bummer too!

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Well, since we’re on true confessions...Actually it’s not perfume that doesn’t stick any more it’s my hair! I was so busy noticing and lamenting the hair falling out of my head, I just realized this week that I’ve lost most of the hair on my thighs, arms and back (those short little ones). How weird is that?

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Interesting... I've been on pred since the end of July and on Methotrexate since the end of December. I haven't lost too much hair from my head thank goodness, but these days my legs and arms are so smooth and hairless, you might think I shaved or waxed them every day.

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My legs have always been hairless. Never shaved/waxed them in my 71 years. Smooth.

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Well I have to admit that I've never been particularly hairy, but there were always a few soft short hairs on my arms and legs (which I never bothered to shave). Now there's nothing at all.

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I'd like this side effect!!!!!

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I have never been hairy either except for on my head and I have lost at least half the thickness of hair I used to have and it is decidedly wild. Practically all my intimate hair has gone although there was never much to start with and I haven't had to do my underarms in over 30 years or my legs ever. Even the very fine hair that used to be on my forearms has disappeared altogether though I really can't say when cos I never did anything with it anyway

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I have always been smooth but after a month of pred had about a dozen her black thick hairs that were well over 1/2 inch. Now at 9mg and they have disappeared completely.

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It’s the chin that gets me ! Hair sprouting like crazy 😱

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Yup, me too SK and I smell different too. Have to use a crystal as am allergic to both antiperspirant and deodorant. Oh the joy of it all. 😱😷

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Well - forget hair - back to perfume. I've noticed that fragrance doesn't last like it used to. And I don't seem to have any body odour at all. BUT, I've been wondering if I'm losing my sense of smell. It seems to come and go. Maybe I reek, and everybody is too polite to mention it. May ask OH . . .

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Oh god I never thought of that !!!!

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I have lost a lot of my sense of smell... also my sense of taste. I no longer smell cleaning products or nail varnish remover which is very scary!!!!!

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Hi Melissa - It's awful losing lots of smell/taste - no 'fun' at all when it comes to food which can taste quite 'indifferent' and then texture becomes so much more important.

About a year or two before I got PMR/GCA I ad a terrible flu virus - on the couch for 6 weeks !! - and afterwards felt like my sense of smell/taste ad been very diminished and later on at best - 'distorted'. I have read all about this and it is more common after viruses than I thought and sometimes associated with some other 'nasties'.

Thing is regardless of any precipitating factors this 'sense' certainly does not improve anyway with age and I have noted several people here have commented on this intermittently. It's a real 'pain' - I have always 'valued' my sense of smell/taste - I used to be able to pick out almost 'perfectly' the ingredients of perfumes and often food with many nuances - but now I'd say my 'capacities' are around 60% of what they once were. My brother also had this 'skill' - he still has (at 68) and has won tea blending competitions on the basis of it - but he doesn't have this PMR/GCA - so I inevitably wonder about the relationships...and where we all are now. Still (strangely) it hasn't completely deterred me from things I really always liked to eat - just 'mention' anything sweet and buttery and I'll be there !!

XX

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apologies in my posts for missing letters - I am still trying to fix my 'sticky keys' as my keyboard has caugt my conditions .....

x

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😀🤣🤪

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Hi Rimmy, I agree, it is quite disheartening. I will look forward to eating/tasting something and then I'll be totally let down/disappointed in the taste, as it's just not there. I usually make a "kick ass" Italian pasta sauce... but in that last year or so I don't even like to make anymore, because it just isn't right at all! I don't think I was ever really good a differentiating tastes (like you and your brother) but I was way better than I am now... *laughing* And yes, not being able to taste, and smell has not deterred me from eating either! Hahahahaha

xxx

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My smell taste cycle is messed up. I think it almost makes you eat more as you are searching for something nice to taste. Some days I taste things and it's lovely.

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Hmmmmm? Nothing really tastes "good" to me anymore... Somethings taste "okay." Rimmy's right it becomes all about the texture... since the taste is so minimal.

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And temperature. Mixing hot and cold and textures.

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Thanks for asking! I'd been wondering the same. I do sweat a lot at night, especially since upping my preds to 13mg. Just recently I've been thinking that I, or my nightie, smell different in the morning. Not necessarily unpleasant, just different somehow. I'm familiar with how my body smells when I've been ill and sweated a temperature out but this is different. It sounds as if its all part of the illness or steroids

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You are welcome... No harm, no foul. I definitely smell unpleasant!!!!

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That's the same with me. Very sweaty at night and smelling quite different in the morning. And my pyjamas smell strange in the morning too, I'm for ever washing them. If I try to sleep naked I get very cold after the sweating when my body is so damp. It's just as well i don't share my bed any more.

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The weird thing is, I am always cold and rarely sweat.

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My bedtime routine is to slip in to a lacy topped camisole then stuff a cotton facecloth down my currently very ample cleavage negating any sexy image whatsoever.

Night sweats are a feature of ME and I use my cotton facecloth to wipe away any feverish pools of sweat during the night. Now add to that scenario the PMR and steroid related symptoms and we have hormones double backing on themselves.

But, I don't especially notice a specific body odour smell - please elaborate! Am I missing out on a PMR experience here?

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HA! Ahhhhh, that was some mental image, to be sure!!!! Thank you, for that!!!!! However, I am always COLD! If I sweat, I have no idea I am doing so and there are no telltale signs in the morning, except I guess the stench!

To elaborate ... I just smell. I have body odour. It just started and I have never had the issue before..

I was hoping a hundred people were going to respond and say, " YES, when I started on 45 mg of Pred, I noticed I stank" : )

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Clearly, you are a freak of nature however good looking! Don't even go down that mental image route other than to amuse yourself. I do think that people that are dealing with huge steroid dosages, as you are, are having to contend with a whole load of seriously s...t side affects.

I truly can't even begin to imagine how that tests your capacity to cope. I have dealt with a long term auto immune illness for a number of year but I am humbled by what people are suffering on this forum.

I commend you on your approach by tackling whatever is presented to you in every which way you can. It's bloody scary stuff. I'm bottling it and I'm only on 10mgs. I'm a lightweight compared to you! But - I sweat but I do not smell...

Nothing but better days ahead for you...x

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I've been called worse! I'll take "freak of nature." It has a certain ring to it... Yeah, being in high doses of steroids suck! And I think I have no choice, but to face what is thrown at me! It is bloody scary, for sure. Thanks for your kind words. I hope better days ahead for you too!

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Hello,

I believe Pred causes a hormone balance in favour of androgens which makes one more stinky.

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Not fair!

Is this why the chaps have a relatively easier time? (Plus the boxers v bra bonus as established in another thread).

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Hmmmmm? I'll have to check this out.

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With every illness I’ve had beyond a simple cold I’ve gone through a period of awful sweat, like the body is getting rid of toxins or something. In the few weeks running up to my GCA any physical activity made me smell like I never washed.

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Hmmmmm.

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Oh yes, and the lovely facial hair. Can’t seem to keep it anywhere else but on my chin!

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I’ve always had to use a deodorant. After my hysterectomy, at the age of 29, it became a positive essential! Now with the Pred, I roast every night. No matter what the weather the windows are wide open and I still get too hot. Husband disappears under the summer weight duvet, cuddling a fleece around him, bless him he doesn’t complain. At Christmas in Yorkshire, during the night that we were informed on the radio the following morning it had been the coldest night for years, I had been standing at an open window at 3am watching the snow fall thinking I was never going to cool down. I’m only on 10, my mind blows a fuse even contemplating the high dose you and many others are taking and coping with the consequences. I take my hat off to you all!

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Jean, did you retain your ovaries when you had the hysterectomy? If so you’d still go through menopause, not sure what age you are?

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I’m 62, hysterectomy in 1985. I was left with a third of one ovarie. This had to be removed in 2007. It was the done in thing in the 80s to preserve part of an ovarie so it continued to produce hormones. Not a great idea and something they don’t do now. I finished up with another ovarian cyst causing me considerably pain. Before the hysterectomy I had two cysts removed in 1980, one of which had ruptured. The surgeon in 2007 was horrified at the mess I had been left in. I had suffered since my teens with excruciating pain. It wasn’t until I begged for doctors to do something that anyone mentioned endometriosis. It turned out that along with the ovarian cysts I also had this disease. As it causes you to bleed internally causing ‘chocolate cysts’ and to stick your other organs together. It was hell! Since then I’ve been on a very low dose of HRT.

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Oh you poor soul!

Your hubby and my hubby sound similar, snuggling under layers while the north wind doth blow 🌬 Single quilts help, me with 5 tog, him with some ridiculous high number and fluffy layers. Also easier to change the covers.

I love watching the snow fall, if it’s really quiet (and they’re not snoring 😴 ) you can hear it land.

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Hmm.... our husbands do sound similar. The snoring can be a major problem, not every night but there are times I think it would be quieter sleeping at London Zoo. He’s going into hospital Thursday for a knee replacement. I get three nights snore free!

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It’ll probably be too quiet to sleep!

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Oh dear god I hope not!!! I’m relying on the recuperative powers of three good nights to give me the strength to be ‘nurse’ when he comes home. I am slightly panicked at the thought of having to find the energy to cope. I am trying to be organised and I’ve employed a cleaner. It leaves me to concentrate on him, food and the driving.

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Good luck. Hope hubby’s a patient patient.

Concentrate on the important stuff, let the rest go hang. No point getting him better if you decline.

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Fingers crossed!

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I have had 9 hours sleep, the last two nights as my snoring husband has been banished to the couch! It definitely wasn't too quite for me! It was heavenly! I didn't even get up to pee!

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I bought some “Save My Face” petite pillows and they seem to help stop the snoring - unless he is lying on his back then they are fighting a losing battle! We put them on top of our normal pillows and they cradle the face so your breathing isn’t obstructed. They are not cheap but worth every penny for us. Worth a try, Ladies. Ps I have noticed that I sometimes smell a bit like a wet dog!

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How cool.... I have never seen them! Thanks!!!

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Maybe they'll note the snoring and decide it needs to be investigated...

My husband also has warm bedclothes while I keep a summer duvet all year. OCCASIONALLY I need my feet warming up a bit but it never lasts all night.

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OH you too ,WOW that was some pain every month for a lifetime wasn't it .My doctor shrugged it of with ''We do seem have got the worse end of the stick being woman don't we . Never been so pleased to get to the menopause ,all the sweats ect were small price to pay lol .

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Looking back it was horrendous. I was never really out of pain. My whole life revolved around painkillers and hot water bottles! I’ve always maintained that if men had to go through what women suffer every month something would have been discovered to help. It’s a design fault!

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My younger daughter also has it - and probably polycystic ovaries too but no-one has ever taken enough interest to look. The first gynaecologist she saw, as a uni student of 19, told her to go away and have a baby! I must have been on another planet if she ever told me because I would have sought him out and made an official complaint. I am quite happy to admit that I am racist when it comes to certain things within medicine! She's seen other half-sort-of-maybe-interested doctors but no real help. Her cousin, on the other hand, has had exemplary management and IVF to conceive her babies. Postcode lottery...

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I was told that too, go away and have a baby. It is definitely a post code lottery. The consultant I had in the 80s was a dreadful arrogant man. Didn’t like me having opinions or telling him in front of five of his students that it was my body he was talking about. I hadn’t been asked if I minded these males students arranged around the bottom of the bed while he examined me. The nurse was holding my hand and muttering I’m so sorry! The staff were terrified of him. The consultant I saw in 2007 told me he was spending most of his time correcting procedures bungled by this dreadful man. Eventually when I was admitted for hysterectomy it was a locum who I saw and he was correct in his diagnosis of endometriosis. I’d never heard of it until then.

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In the 1980s I could understand it - even if it was as wrong then as now. But in 2002?

What a dreadful experience.

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I know ,not just period pain ,pre ,during and after ,you wonder about it don't you .

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Mine was definitely due to PMR in the first 5 years - I realised I STANK after a single class at the gym, having showered and used deo before going. I tried different deos, no different after a couple of days. I stopped using deo altogether and just washed. Things improved. I haven't used deo since - and like you before, no, don't smell. But I almost never use soap either. The only time I feel I smell is after I used soap, within a day I'm back to normal.

I think it is the skin flora (the bacterial population), just like the gut flora if it gets out of balance it causes odour when you sweat. Once the bugs are nicely in balance - all tickety-boo.

BO is a common thing in illness. OH really had a horrible smell when he had cancer.

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Odd that it started only now.... after being in such high doses for 4 months? I have always used soap... but never deodorant. And again I'm always cold and rarely sweat, but you're right, my skin flora must be out of balance for sure...

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😂😂😂😂😂 sorree can’t help laughing at your well written post.

We do get some good reading on here

Can’t help you tho. 😂

But I haven’t herd of prednisone making us stink. 🙄

But it has brought a funny story to mind

A good few years back I went to the doctors with a bowel problems.

While I was in the surgery this horrible smell crept up my nostrils. Immediately

I thought Christ the the doctor has dropped one. 😱🤨

She diagnosed me with irritable bowl syndrome. 😤

As I was walking down the corridor the horrible smell was back. 😲 oh o it

Dorned on me. 😱😱 it was me 😂😂

Good night all

🍀🍀🍀🍀

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🤣🤣🤣🤣🤣🤣 Thanks for sharing that! It didn't make me feel better, but it made me laugh!

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Hello,

I believe Pred causes a hormone balance in favour of androgens which makes one more stinky.

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There's that as well - forgot that, thanks!!

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That's good to know...especially if it's a gusty burned smell.

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I'm hoping Ive swerved this problem but will now need to check with those around me! (I use a natural crystal stone deodorant from boots. You apply when wet following shower - but never after shaving! (Skin peels and is v sore). Just back from a funeral and missed the forum - this thread did make me chuckle.

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Pongo13, this thread has given me food for thought and some chuckles.

Q. Do you think you should change your name?

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🤨😲😂😂

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Nooooo don’t like sharing. Name

I’ll Chang to Stinky.

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Hahahahahaha! I think I have the market cornered on that one!

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😂😂😂😂

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Hilarious! So made me laugh! But am also reaching for the Chanel! Love it.

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A lovely friend of mine a lady I play badminton with,dose pong of bo I would love to tell her and give her some tips.

How could I tell her tactfuly.

Brender I like you a lot.

‘ but............ 🤔 er. Yer Stink!! 😂

One thing I have discovered is after a really good shower washing all over under the arms. After shaving I knead to wash under arms. Nearly missed the m out of the 😲. Again

Probably due to the very hot water

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Hmmmmm? If you want to keep Brenda as a friend and partner... I'd work on that opening line!

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😂

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Hi Melissa

My sense of smell has been quite distorted (I think) since I 'got' this rotten condition - BUT I'm not sure that it's just me or me at all that 'smells' - the closer I get to other humans - the 'smellier' I often find THEM. Fortunately being a non-city dweller I don't have to stand shoulder to shoulder to commute or anything dreadful like that - so Melissa like me you might consider it's THEM not YOU !!

XX

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Thank you! I can always count on you Rimmy to make me feel better! xxx

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I have no idea....I haven't noticed a 'different' smell with pred.

I don't use deodorant either...not a long term thing like you but more recently when I switched to organic hygiene products. I now use an Alum Stone which I much prefer and it works as well as I would hope it to.

Edited to add.

Maybe you're not menopausal, but just in case.

There is a Menopausal phenomena called Dysosmia regarding smell.

sciencedirect.com/topics/ne...

I've suffered with it for several years. The smell I experience has changed over time but at times I can smell what I think are exhaust fumes (inside the house), rubber and smells I can't describe. The exhaust fumes smell was so bad that we had to buy a Carbon Monoxide monitor just to reassure me that it was me and not a real problem.

I already have something called Hyperosmia - Hyperosmia is an increased olfactory acuity (heightened sense of smell), usually caused by a lower threshold for odor. This perceptual disorder arises when there is an abnormally increased signal at any point between the olfactory receptors and the olfactory cortex.

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This is so true. I smell burning in tge house. Like wood burning. It makes me crazy because it us sooooo obvious and no one else can smell it. I also smell a green plant smell which no one else can smell. My nose thinks my body is pregnant maybe? !!

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Hmmmm? Well, I am way past menopause (63) and my sense of smell and taste have actually decreased over the years, since having some sinus issues. I've lost hearing in one ear as well. I will check out your Alum Stone, thanks!

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Hi Melissa

Do you eat lots of garlic cos that can come through the pores and you can stink like a polecat!! I always notice that when holidaying on Greek Islands. ... Have you noticed people standing downwind of you? Lol.

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Hahahahahahaha... no I haven't noticed people backing off... but then I am not around people a lot, as I've become a bit of a PMR/GCA antisocial, introvert!

I begged Hubby to tell me if he had noticed anything and he swears he has not...

And no more garlic than usual... which is not really a lot. I'm not a great cook and pretty much stick to the basics.

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Perhaps you had a bad dream which made you perspire more than normal.

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...but that's the thing, I am always cold! I don't sweat... not even on the Pred! I wake up to roll over or whatever during the night and I'm cold, always searching for and pulling up covers.

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I too have become obsessive about my smell!! Have always used deodorant as was a sweaty teenager through puberty. Feel thermostat needs rewiring since PMR arrived. Already through the menopause so blaming all my sweats on prednisolone. Agree that I smell different and usually just assume it’s BO. Rush off to shower and change!

What else can we add to this jolly condition??

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I can relate to this thread - you can always be relied upon to start something 'interesting' Melissa!

I've had the altered sense of smell that IdsaMum and others have described. At times since diagnosis I have smelt 'exhaust fumes' in the house, but when they followed me in the car and into the supermarket, I knew it was just me! I wondered if the vasculitis had affected my olfactory nerves, or whatever.

As far as body odour is concerned, I smell different, but not disgusting. I've used just a crystal deodorant for years. My theory has been that things we put into our bodies give us a different odour - garlic, asparagus to name just two. So I've blamed it on the pred or the calcium supplements - I've not had the urinary tract problems that others seem to have with calcium, but if it alters the chemistry of the urine, then it probably alters the smell - not to mention the alteration in hormonal balance caused by the pred. (We know that male armpits usually smell worse than female!) I've said enough, but I think you know you're not alone now, Melissa. x

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Why, thank you... I will take your first comment as a compliment!!! : )

All good points you make... and yes I did think about what I had been eating lately... and would understand if I had been eating a particularly strong curry, or spicy ethnic dish... but I'm not such a great cook and I stick to the basics! Maybe I will chalk it up to the Pred and calcium supplements as you've said... Today, I was fresh as a rose!!! So maybe it was a glitch in the matrix! : )

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Don't get this on a regular basis but have had some mornings when I have woken up and I don't smell too good but not a normal sweaty smell either. I think this happened when I was on about 20/21 mg but seems to have stopped now. Also hair growth under the arms and legs seems to have stopped- that's a plus for me!!

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I know how you feel about this. When I first went down with PMR and sweated buckets (not genteely perspired) the smell was of overripe strawberries and raspberries. Even when the sweating abated I could not get that smell out of my nostrils' memory bank. Took years before I would have berries in the house.

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I can’t remember who was supposed to have said this “horses sweat, men perspire, ladies mearly glow” ha! 😂

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Well this has been hysterical to read through ladies and gentlemen. The makings of a good play! as for answering the question, yes I believe the prednisone is causing its own unique odor. Maximum 17.5 now on 14 mg. Maybe time to invest and I mask from the local hardware store.😝

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Well we seem to have a double whammy ... my OH has hormone implants for his cancer and his musty smell has disappeared ( hope I'm not being too disloyal here) but he suffers from the sweats and snores. I, on the other hand, don't seem to be able to get through the night without massive tossing and turning and up in the night for a pee or two so I have moved into my daughters old bedroom for the time being!

As for deodorants, I use simple...hopefully seems to do the trick.

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Prednisone. I'm down from 30 to 11mg/day. Body odor is just one of the ongoing side effects I'm continuing to experience. Sigh.

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I feel your pain... : (

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I found that on a high dose of preds ,especially during the summer months although l have always used a deodorant,the deodorant just did not work as well as usual.the underarm odour was so strong. I was constantly washing and it was still not having much effect. I found this very embarrassing at the time as l had not had this problem before. Things have improved fortunately as l am now on a very low dose of preds. I believe that others on this site have mentioned the same problem so it must be the preds. I hope that a deodorant will work for you mamici.

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Me too... I'm isolated enough with THIS!!!! Hahahahahahahahaha

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This really connected with me! I have alot of hyper-sensitivities! Like it drives me nuts the noise chewing makes (sounds bug me a ton), I can hear my husband turn over from way at the other end of the house downstairs and I am upstairs! Then I can't get back to sleep, sheesh. Smells are so annoying, but not as bad as when I was pregnant. The pred has opened up my "smeller" again (helped my allergies) so I can actually breath all night with no nasal spray or anything, one bonus. As for hair, I had not idea my arm hair was gone (just checked) what the heck! Wierd. Oh, but I have to use deodorant as I sweat all day and night. Ugh.

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Yes! I am ultra sensitive to sound too! My husband's snoring (actually his breathing!!!!!) is quite annoying! Hahahahahahaha.

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Oh yes - people chewing, eeek! It is a real condition:

sciencealert.com/can-t-stan...

OH eats crisps/chips almost every lunchtime. One of his favourites is ketchup - the aroma makes me want to puke... When he got his hearing aids the guy tried to get me to have a hearing test. Since I hear the lift in our building and it is the other end of the corridor I really don't feel I need to hear better.

Then there are the people who sit and fidget their feet ALL the time. There can't be that many people with restless legs syndrome in their 20s and 30s can there?

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I certainly understand where you are coming from. I thought it was just me--nightgowns are a one use item and then the wash.I did get a tip from a friend that seems to work. Before putting on the deodorant I apply a swish of Listerine with a cloth or a cotton ball. Why it works I don't know but it seems to help. I find that it is not only me though--everything seems to have a metallic funky odour.

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Oooooooo, I like that! Minty Fresh underarms! Cheers!

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