Does anyone have the problem when they get to 6mgs with their taste and no smell of anything?. My daughter said oh my god mum you're washing smells amazing. I couldn't smell a thing. Why? Xx
Taste: Does anyone have the problem when they get... - PMRGCAuk
Taste
Written by
morrison
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39 Replies
•
Hi, I'm not down as low as 6mg (still on fairly high dose of 35mg) but have definitely lost my sense of smell and my sense of taste! Although to be honest, I think I had lost a lot of both just before being diagnosed... but it has gotten worse since the Pred.
Rimmy• in reply to
Me too Melissa - and see below also BEFORE diagnosis - this might possibly be an 'early symptom' - not one that has been raised very often here - but it has come up before.
• in reply toRimmy
I have often wondered that!!! I was seeing an ENT for 6-9 months before I was diagnosed with GCA; sinus problems, headaches, loss of taste, loss of smell, blocked ears, post nasal drip. I even complained of pain in my TEMPLES, he just said that pain in the temples is not associated with ENT! "Okay, thanks Doc!"
Rimmy• in reply to
I never got to an ENT but also had sinus and face pain (no congestion though) loss of taste/smell and blocked ears - even before I was dx with PMR and nobody seemed 'interested' !
Similar scenario here, incl "nobody interested". Probably included in "it's just your age", which seems to include rather a lot.
Was losing sense of smell before GCA diagnosis, but it then got worse. It comes and goes though.
Can still taste, but not the same. Used to have miso soup every morning. Loved it. But when started prednisolone it tasted nasty, and I haven't had it since.
Yes 'distortion of taste' is also something i get intermittently !
My perception of taste has definitely changed. I also have the symptoms of allergic rhinitis, permanently and that effects my sense of smell. I am always the first to smell my “lovely” neighbour’s barbecue though, I invariably think the house is on fire. I think it might be the length of time we’ve been on steroids rather than 6 mgs. Have you just dropped a mg. and left me behind at 7 mgs?
I did a 0.5mgs drop. First couple of days felt dreadful but it lifted. You haven't been left behind, don't worry, you'll get there. Xx
I started on Pred for PMR in January 2016. Reached zero in about February 2017 and had a flare up. Went back to 5mg but it didn't help so upped it to 10mg with results over a year ago and am now back down to 5mg with shoulder joints hurting but generally able to go hiking if I want to. For me, my sense of smell has changed dramatically. Nowadays, the sense of a smell is as if it's in a different room in a different part of my brain that has to be looked for rather than being immediately available to my senses. I also experience a sensation whereby something will trigger a memory of an unpleasant smell (such as greasy drains in Penang) and that smell lingers with me when it is totally not experience by other people. I too think it has something to do with the length of time one is on Pred rather than the size of the dose.
Not something that has happened to me even after 9 years on pred. My taste in wine has changed - but that is something that often happens with age anyway. Although my husband would suggest it is simply I have developed more expensive tastes...
Interestingly, Pred doesn't seem to have affected my taste and I can enjoy the things that I've always liked however, the sense of smell issue can cause me to be put off certain foods if that unpleasant (imaginary?) smell becomes associated with something I'm about to eat. Wine? Beer? No problem.
Strange - since the senses of taste and smell are very closely linked. No doubt it will remain a mystery!
Hi morrison
Like SJ and mamici I also have an impaired sense of smell/taste and had that for quite a while before my PMR and later GCA dx I had a shocking flu a couple of years before that - no joke on the couch for 6 weeks and too sick even to got to doctor - but eventually recovered and realised I could then hardly taste a thing !! This has improved somewhat over the last few years but I know I am still 'missing' so many nuances.
Like everything this is very subjective but I REALLY miss the intense taste/flavour of buttery creamy things (some would say that IS 'good' - but not for moi !) I also used to be able to differentiate perfume ingredients very accurately - now everything seems a more generalised fragrance with so much of the 'detail' missing ! All of this is NOT helpful of course when trying to maintain a healthy diet as sometimes just to get intense flavours I resort to the worst solutions - like high sugar and more occasionally salt !
Get thee to an Indian restaurant! Pleanty of intense flavours there and not necessarily hot!
And have you tried using lemon and herbs instead of salt?
I LOVE Indian food - my partner is a vegan so it is one of her favourites too - as long as they leave out any dairy - we are also avid users of lemons on/in almost everything - even soups which surprises some people. As I mentioned salt isn't my real temptation i am a bit susceptible shall we say to sweet things and have restrain myself - whereas my OH wont eat without the salt shaker. We should really 'ban' both but haven't got to that point yet - but no doubt it is looming !!!
I have a tiny dispenser of salt I bought many years ago for camping - it has never been opened!!!! I should say it is the ONLY salt I have in the house!
That's hardcore PMRpro - but certainly healthy !!
Not necessarily! I was in hospital recently and they had to give me salt tablets as I had too little in blood.
• in reply toRimmy
My "family recipe," pasta sauce has not tasted "right" (to me) for years! I have blamed it on the ingredients available here in the UK, versus what I used to buy in USA, but Hubby says it is the same. (?) He is English, so he may just be being polite! ; )
I don't enjoy eating as much as I used to... but maybe that is a good thing!
I find the meat makes a major difference to how ragu tastes. I only buy mince made from the whole piece of steak in front of me at the village butcher and my daughters can't believe the difference in flavour to theirs, apparently made identically. I NEVER use stock cubes or powder - and still get the intense meat flavour. But our meat has ranged the meadows and alms - no concentrated feed for them and plenty of exercise!
My sense of taste and smell has been gone a while. As I started a lot of new meds around the same time including pred I am not sure which one caused it. Completely spoils the experience of eating, which I have gone off food lately. Upside is it is helping me loose the weight I put on in the first few months of pred. I’m now on 7mgs and hoping the lack of enthusiasm for food continues.
My sense of taste and smell is dull. I blamed it on the Lansoprazole I was prescribed at diagnosis, but since stopping that over a year ago, I don't think anything has changed. I have a piece of dark chocolate every day and it's supposed to be mint flavoured, but I wouldn't know!
I have asked the question before and just been sort of fobbed off.
It never happened to me, but others have said it on and off over the years. Someone I know still cannot taste tomatoes and that has been going on for years. Mind he does make them taste better when he adds lemon.
Like PMRpro, I don't cook with salt only because 20 years ago my Cousin (who was 60 then) moved in with me, she had never used salt in her life.
So like PMRpro I just added lemon and extra herbs. I still put salt on fish and chips.
LEMONS: I was given a tip, since passed on many times, buy organic lemons if possible, but definitely un-waxed ones, put them in the freezer and when solid, grate the whole lot. You can keep the grated stuff in the freezer. Add the grated stuff to everything, like stews, baking and sprinkle over salads.
I put on strawberries, which I already put black pepper on to enhance the flavour. Forget the sugar. I leave the berries for about an hour before eating.
One other tip about lemon, if you are having stomach problem (acid reflux etc) put the lemon in the microwave for about 1 minutes (3 times as much juice) then divide the juice into three and put it in a little water and drink before a meal. It works for most people and then you can do away with the PPI's if it does work for you.
One of the reasons they probably fob you off is that oral corticosteroids are often used successfully to treat anosmia (loss of sense of taste) so they can't envisage them CAUSING it.
However - logic forces me to ask: Does vasculitis affecting cranial nerves lead to it? If GCA can lead to damage to the optic nerve surely it could also lead to damage to the olfactory nerves?
Rather bizarrely I've seemed to have discovered a passion for fish. Pre-Pred/PMR yuk, now I'm really enjoying it, most strange.
Have a taste problem too. Need to eat hot chilli or curry everyday. Everything else very bland. An hard of hearing but have noticed my hearing is worse and feels as tho I am in a tunnel. Does anyone else have a hearing problem
There has been a research project running on the involvement of ears in GCa - only for UK residents though,
If the blood flow to the optic nerve and the jaw can be compromised with GCA - ears are very close too!
Yes one ear is partially blocked. But not like I need to hVe it syringed.
yes my hearing got worse a couple of weeks after being diagnosed with pmr and I got bad tinnitus two weeks after starting prednisolone. 2 years on and my hearing is more or less stable, still have bad tinnitus. However just this week on 2mg I noticed my loss of smell not completely but I have to put my nose close to something to smell it and somethings seem to have no smell at all. I am meant to be reducing to 1mg now and my bloods have all been fine, but I am feeling depressed about it all and anxious about the next reduction.
I wish I would have seen this 2 weeks ago. I received a lovely bouquet of flowers and I couldn't smell them. Beautiful roses and carnations. I wish I would have thought to ask someone else if they could smell them. So, my guess is yes I have lost my sense of smell with some things. What else is going to happen with this miserable disease!
Roses these days often don't have a scent - so maybe it wasn't you.
PMRpro,
The one you recognised and told me its name, Super Star (just like you). 
is out and has more flowers on it than I have ever seen.
It is many years since all my roses have so many flowers and so early, that I have actually picked some for the house and now it is full of scent. Normally I do not pick flowers from my garden but this year....... they have so many on that a few are not missed.
Keep spirits up. We never know, these senses might come back. Don't be angry with this disease, just try andunderstand it. We have to take over our body, not let it take over. I live in hope 😊😊
had PMR for two years just got down to 2mg and noticed I wasn't smelling toast, then realised I couldn't smell grated carrot or apples, also if the boys hadn't flushed the loo (happens often in our house) there was no usual horrid urine smell, I suppose thats one benefit . Was hoping PMR had gone but now worried its changed and is lurking in my head causing imflamation although my blood results seem pretty stable
Been a BAD day. So discouraging when these days happen. All because I spent 3 enjoyable hours with my beautiful granddaughters.
Generally I try to be up about all of this.
Thanks
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