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# 208524 15-Feb-2017 18:21
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Sorry for this long post.. but it’s not a light matter to me and just throwing down the fact and what has happened to hear any feedback that may be good for me..

 

 

 

In December I visited my doctor due to a persistent dry cough that kept me awake all night. She listened to my breathing and said everything sounded good and sent me away saying it would go away on its own. I returned again in January when my cough hadn’t cleared, in fact had worsened. This time she did the same and came to the same conclusion that nothing was wrong with my chest and said she didn’t know what the cause was but came up with 3 possible reasons, one a nasal drip, another asthma related and the other was acid reflux. She then gave me 3 different prescriptions to treat each one and told me to try the one by one giving each one about 3-4 weeks to see if they helped before moving onto the next.

 

I tried the first one, fluticasone propionate, I used it as instructed and for 3 weeks before stopping since it was not helping. I then waited a week before thinking about trying the next option which was an inhaler called Flixotide. I was told this Flixotide inhaler would take 7 days to have any effect however I am 3 days in and I have had my first nights sleep without coughing so great news.

 

But.. during this 1 week break between medications I noticed that my sense of smell had gone.. well, in fact I hadn’t realised this immediately only making mental notes and comments to my partner about how certain food stuffs I was handling had no smell to them (i.e. lavender, rosemary).. she didn’t take too much attention to this until at the weekend there were a supposed very pungent bad smell in the back garden and I couldn’t smell it. It was then that it dawned on me that I wasn’t smelling correctly and started going round the garden and house smelling everything I could think of however nothing.. even the smell of balsamic vinegar that used to make me screw up my nose smelt of nothing.. oranges, bleach, coffee, perfume.. I can’t smell anything.

 

I began to get very worried and started googling and when I decided to look up the fluticasone propionate nose spray I had used (brand name in NZ is Flixonase or Flonase in the US) that I learnt that a known side effect to the medication is loss of smell.. and not temporary but often permanent. I read through lots of forums and press stories about how this medication has this terrible side effect yet is used by millions of people.. in fact it turns out GlaxoSmithKline has law suits against them suing them about this yet somehow they have managed to convert the drug to an OTC medication and even managed to remove the previous warning from about losing your smell from the packaging.

 

Anyhow.. back to my issue.. I read all this, got pretty upset and angry as I am thinking the worst that I have lost my sense of smell forever, and then go to look at the packaging of my NZ branded Flixonase.. no mention on it anywhere that this is a possible side effect. My doctor never mentioned anything about this either.. in fact all she did was give me these 3 prescriptions, wrote 1-2-3 on the tops to tell me in which order to take them and that was it.. no warning or anything.

 

I’m sitting here now still worried.. 10 days after stopping from taking this Flixonase and still no ability to smell anything.

 

I don’t know what to do, who do turn to or even who to blame.. should I even be looking to blame someone? Is it GSK’s fault for making this stuff? Is it the Medsafe for allowing its use in NZ? Is it my doctor for not providing me with any warnings? (although she would have had to have researched it online and not from the leaflet to know this). I really don’t know.

 

I phoned up my medical practice this morning and they have made me an appointment for Tuesday but they wouldn’t put me through to speak to my doctor or provide me any advice. I told my colleagues about this and they are horrified and saying I should be holding my doctor responsible but also saying I should not go back to them and to get a new GP to speak to.

 

If I was American I’m sure it would be simple.. sue them all in court.. but I’m not American and honestly don’t know what I should do.. I have lost one of my senses and it will (and perhaps already) have a knock on affect to my sense of taste since the two are so entwined. I don’t know if it is temporary and if it is how long for or if it will be permanent. It is causing me a lot of stress either way and although minor when compared to many other people I feel like I have a disability now. I had an excellent sense of smell and now I have nothing.. even if (and hopefully) this turn out to be temporary going through this experience is really not nice.

 

 


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  # 1720772 15-Feb-2017 18:53
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That side effect isn't even listed in the MedSafe documentation so it looks to be very rare. I'd imagine you'd be covered by ACC.





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  # 1720801 15-Feb-2017 19:01
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I was on flixonase for a while to see if it helped with some sinus issues. I dont recall any smell issues but I dont really have the best sense of smell at the best of times. Must be quite freaky to not be able to smell things at all. Im ok with things like "burning electronics" and "smells like s..t" but im not one of those people that can tell you what undertones there are in wine etc. All vineger to me.





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  # 1720812 15-Feb-2017 19:43
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These sort of discussions are nearly always unsatisfactory.

We don't know your medical history or other factors in your health which might be embarrassing. Beware the internet though. In the past knowledge was power but now it's experience is power.

Nasal spays can cause funny smells because you are depositing a drug on nasal mucosa. It's not listed in up to date as one of the drugs known to cause anosmia but alcohol and smoking are.
Allergic rhinitis is known to cause gradual loss of smell which is one of the conditions treated with flixonase.

Pragmatically, you stop the drug after checking with GP and see what happens.

I can understand your concern and it sounds quite frightening to you and so you need to ask your go to ring you back so you can have a chat and come up with a next step.

A.

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  # 1720813 15-Feb-2017 19:45
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My wife and I take Flixonase, it's pretty common, we have no issues with smell. Sorry to hear about your problems, but your course of action of clear - see your doctor, if you don't think they acted professionally or address the situation then there will be escalation paths. I don't think prescribing something that millions of people take with no issues would be considered something they did wrong, it could just be bad luck, or more precisely something about your makeup/dna that it doesn't agree with.

 

Hope you get things sorted out.




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  # 1720815 15-Feb-2017 20:05
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Thanks for all the responses.

I will try phone my gp again and if unable to hat to her will at least see her on Tuesday.

afe66 - you are absolutely right, your comments are spot on, always good to see such a level headed response. My post has come from my worry and uncertainty on what to do. Not that it is likely to make any differences to responses but easy to put out there, my health to date has been excellent with no issues and no allergies that I've found in the last 35 years.. just this recent cough which the doc can't diagnose but seems to be fixed using the inhaler.

I am worried as I am sure all could understand and it has been playing on my mind constantly since I realised. I'all wait to see what the doc says and take it from there.. here's hoping it's a temporary thing!



gzt

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  # 1720820 15-Feb-2017 20:13
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It's somewhat normal to get nothing on the phone. I'm not familiar with what you describe, but if there is no satisfactory response you should immediately seek advice from a different source. Probably a specialist. In fact, your GP may well refer you immediately anycase.

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  # 1720872 15-Feb-2017 21:31
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i take flixonase all the time. i've just checked my sense of smell and it's still there!

 

i'd say go to the doctor and find out why you can't smell.

 

i wouldn't trust anything the internet says about anything, unless you know a lot about that something already and can filter out the noise from the facts. i'd trust medsafe. these drugs are trialled on prisoners and university students (who need money) and compared against sugar pills and all effects are recorded on the medsafe data sheet. yes sugar pills do produce amazing side effects. sugar pills contain sugar you use in your kitchen and nothing else other than a matrix to form the pill.

 

i don't know if you've discovered on your recent searches but the active ingredient in flixonase and flixotide is the same - fluticasone. it's a steroid. it stops inflammation (lay term = swelling, like when you bang your head/knee on the wall).

 

there are a few things that need to happen in order for you to smell. one of them is not working.

 

- brain, nerve to the nose, nerve ending at the nose, some moisture at the nerve ending to dissolve the molecules you want to smell, clear passage between air at outside of the nose and the nerve ending in the nose to allow passage of said molecules, the molecules in the air.





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  # 1720887 15-Feb-2017 21:57
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I'm a Flixonase user too for chronic rhinitis (used to be on Rynacrom but they stopped making it) and have had no issues with smell.


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  # 1720894 15-Feb-2017 22:07
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joker97:

 

i take flixonase all the time. i've just checked my sense of smell and it's still there!

 

i'd say go to the doctor and find out why you can't smell.

 

<snip>

 

 

As above - I'm a regular Flixonase user and I do not suffer from anosmia.

 

Stay calm, and seek medical advice.





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  # 1720921 15-Feb-2017 23:09
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This sucks, but I'd persist with getting the cough sorted - stopping inflamation without finding the cause isn't a great way to go.

I am however biased. My dad died a week ago from liver cancer - after a ~9 month cough for which the cause was never discovered, but which may have been related. After that experience I'd be insisting on xrays, and if they're inconclusive cat scans.

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  # 1720988 16-Feb-2017 08:03
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moschops: But.. during this 1 week break between medications I noticed that my sense of smell had gone..

 

This may have been a sad coincidence and was going to happen anyway due to an existing inflammation

 

moschops: I began to get very worried and started googling and when I decided to look up the fluticasone propionate nose spray I had used (brand name in NZ is Flixonase or Flonase in the US) that I learnt that a known side effect to the medication is loss of smell.. and not temporary but often permanent. I read through lots of forums and press stories about how this medication has this terrible side effect yet is used by millions of people.. in fact it turns out GlaxoSmithKline has law suits against them suing them about this yet somehow they have managed to convert the drug to an OTC medication and even managed to remove the previous warning from about losing your smell from the packaging.

 

Be cautious about internet researching, especially with medical disease's and pharmaceuticals, as there is allot of "fake news" (new buzz phrase) out there.

 

moschops: Anyhow.. back to my issue.. I read all this, got pretty upset and angry as I am thinking the worst that I have lost my sense of smell forever, and then go to look at the packaging of my NZ branded Flixonase.. no mention on it anywhere that this is a possible side effect. My doctor never mentioned anything about this either.. in fact all she did was give me these 3 prescriptions, wrote 1-2-3 on the tops to tell me in which order to take them and that was it.. no warning or anything.

 

Lias: That side effect isn't even listed in the MedSafe documentation so it looks to be very rare. I'd imagine you'd be covered by ACC.

 

 

This side effect is so rear that your GP and NZ Pharmac properly would not know about it.

 

I do sympathise with you and it seems that Anosmia has lots of causes and out comes. It will be interesting see what your GP says and whether she sends you off to a ENT specialist.

 

Good Luck





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  # 1721126 16-Feb-2017 11:48
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My GP also explained to me about side effects that they basically list it if it happened to 1 person on the trial even if they did not know how it happened, since they cant prove that it was not the drugs under trial, which is why there are so many listed on things that never actually happen.





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  # 1721129 16-Feb-2017 11:51
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I have a chronic condition, I learnt very quickly never read the internet for drug advice, doing so will put you off even taking the water to swallow them. Always talk with your health Professionals including the Pharmacist.





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  # 1734509 10-Mar-2017 19:23
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You should pay attention to side effects.

 

Husband had one from a certain BP pill.

 

Nothing on medsafe about it, it took ages to figure it out.

 

Numerous doctors ignored his blood test results until finally, after moving, a new one noticed his Stage 1 kidney failure and such.

 

The advice was to change diet (eliminating nearly everything in our vege garden for starters) so I looked up his pills.

 

oh looky, bad kidney issues from this one.'back to new doc who said oh but he's been on it for ages.

 

Then looks back at past blood tests, oops. Had this issue all that time too.

 

Changed pill, problem went away, kidneys all fine now.

 

 

 

As for the smell business, husband also has had a poor sense of smell all his life. And allegies, hayfever, allergies to dust, pet fur, etc.

 

No in his late '60s, he's lost it almost completely.

 

he can smell strong things like turps or dettol, is about it.

 

I noted on one of his hospital reports that if you have these allergies long term it can cause this. Cure? Nothing.

 

 


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  # 1734610 10-Mar-2017 23:20
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I've taken Flixonaise before, but I thought you had to take it for about a month before the positive effects were noticeable. At 3 weeks it might not have been enough. But just as well you've noticed and stopped.

 

Also had doctors prescribe hayfever medication before, neglecting to tell me that it makes you drowsy and you should NOT drive. White label, so no warning on the bottle. Only groggy mornings & google foo alerted me.


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