Psoriasis and loss of smell

[jiml]

What a shame Fred I bet you must miss so many smells , Merlot, flowers, fresh cut grass, food and many more..... It must be frustrating

[canadakris]

Hi Fred,

Joined this forum after searching for loss of smell and reading through some of your posts. I lost my sense of smell about 4 or 5 months ago now, about the time we upped the dose of Stelara from 90mg every 8 wks, then every 6 wks, and lastly to 90mg every 5 wks. However, unlike yourself I did not suffer a bout of the flu that I am aware of. If I did have a common cold, it was stealthy.

The dermatologist wondered if I had hit my head around the time I lost smell but I hadn't. She did inform of some of the reasons for Asnomia and did mention that in some cases you never get it back. She felt that it was not related to the Stelara at all.

It has me very concerned, so much that I've delayed a dose that was due around March 1. Interestingly enough, while my sense of smell has not really returned, I do get small whiffs once in a while, and when I smell a bottle of rubbing alcohol it does burn my nose some. It didn't have that effect last month.

In terms of my experience with Stelara, it certainly keeps my psoriasis in check, but I get to a certain point, maybe PSA 10 and that's as far as it goes. Over the years I've done the Enbrel, Humira, Remicade, Methotrexate, etc. Attempted the pill Apremilast back in January, in addition to the Stelara, but found the digestive issues far too intense and suffered a nasty bout of depression, which is way off character for me.

Naturally, delaying my dose has the psoriasis starting to flare and I'm aching in places I didn't know could ache. However with these random whiffs I have been getting and the fact that my nose does now respond to the alcohol test, I'm somewhat optimistic that I might be able to smell again.

I meet with the derm. in a couple of days and will be sharing my experience.

Thanks for posting about your experience, it's the only similar one I've found.

Kris from Canada

[jiml]

Hi and a big welcome to the club
I can't help you regarding loss of smell, but I know Fred will be pleased to have a conversation about it
I hope you enjoy your time here with us and you will find a wealth of knowledge here

[Fred]

Hi Fred,

Joined this forum after searching for loss of smell and reading through some of your posts.  I lost my sense of smell about 4 or 5 months ago now, about the time we upped the dose of Stelara from 90mg every 8 wks, then every 6 wks, and lastly to 90mg every 5 wks.  However, unlike yourself I did not suffer a bout of the flu that I am aware of.  If I did have a common cold, it was stealthy.

The dermatologist wondered if I had hit my head around the time I lost smell but I hadn't.  She did inform of some of the reasons for Asnomia and did mention that in some cases you never get it back.  She felt that it was not related to the Stelara at all.

It has me very concerned, so much that I've delayed a dose that was due around March 1.  Interestingly enough, while my sense of smell has not really returned, I do get small whiffs once in a while, and when I smell a bottle of rubbing alcohol it does burn my nose some.  It didn't have that effect last month.  

In terms of my experience with Stelara, it certainly keeps my psoriasis in check, but I get to a certain point, maybe PSA 10 and that's as far as it goes.  Over the years I've done the Enbrel, Humira, Remicade, Methotrexate, etc.  Attempted the pill Apremilast back in January, in addition to the Stelara, but found the digestive issues far too intense and suffered a nasty bout of depression, which is way off character for me.  

Naturally, delaying my dose has the psoriasis starting to flare and I'm aching in places I didn't know could ache.  However with these random whiffs I have been getting and the fact that my nose does now respond to the alcohol test, I'm somewhat optimistic that I might be able to smell again.

I meet with the derm. in a couple of days and will be sharing my experience.

Thanks for posting about your experience, it's the only similar one I've found.

Kris from Canada

Hello Kris   to Psoriasis Club.

Thank you for posting about your loss of smell, you're the only other person I have met who has had the problem. The specialist I saw about it asked me if I had banged my head and I do think that is one of the causes of Anosmia, however after all the tests and check ups they decided my problem was caused by the bad bought of the flu.

The specialist and my dermatologist also confirmed there was no relation to the loss of smell and Stelara, my own research has also been unable to find any connection. So personally I would say Stelara has not caused yours or mine loss of smell, though I'm not a professional and it just my opinion.

If you are experiencing a hint of rubbing alcohol that's something, I'm still getting nothing at all. My specialist said in his opinion it will not come back as I have not experienced anything, he did say if ever I did get a slight hint of a smell to keep smelling it and try to train my brain again as to what it is. He also said to get my wife to sometimes get something with a strong smell, tell me to close my eyes and take a deep sniff. We have tried this with many things, but so far nothing apart from my eyes started watering when it was an onion.  

It's certainly horrible loosing your smell and it's not till it's gone you find out how important it is, your smell is important for safety reasons but also for quality of life. (Apparently depression and suicide are high amongst people with Anosmia, and I can understand that)  

Re your Stelara: You are on a very high dose at 90mg every 5 wks, I have never known anyone on that dose. I'm wondering if such a high dose could be effecting your immune system and messing with your sense of smell! But that's just a thought that could be worth asking about.

Regards.

Fred.

[canadakris]

Thanks for the nice warm welcome guys.

I have to agree that I've not found anyone reporting online that they are getting this high of a dosage, although my derm. says that she has a couple others this high. I certainly wonder if that is playing into it.

The reason we went so high is that we did see results with Stelara, but after the 4th week or so they would wear off. By week 8 we were right back where we started, or in some cases worse. Apparently I have a very stubborn case.

I'll keep you guys updated as things develop.

Kris

[Fred]

Thanks for the nice warm welcome guys.

I have to agree that I've not found anyone reporting online that they are getting this high of a dosage, although my derm. says that she has a couple others this high.  I certainly wonder if that is playing into it.

The reason we went so high is that we did see results with Stelara, but after the 4th week or so they would wear off.  By week 8 we were right back where we started, or in some cases worse.  Apparently I have a very stubborn case.

I'll keep you guys updated as things develop.

Kris

Don't hesitate to start your own thread about Stelara in Prescribed Treatments For Psoriasis if you want as your experience could help others, and I would definitely be interested on your update about your Anosmia.

[Caroline]

Hi Kris,

Welcome to psoriasis club !



Caroline

[Kat]

Kris!

[JohnB]

My sense of smell story.

This is a slightly odd tail. It manifested itself in Egypt on holiday 2009, they were fumigating one evening and Mrs John was commenting on how much it stank but I couldn't smell a thing. Up until this point I hadn't actually realised my sense of smell was to be found wanting. I haven’t had a bang to the head and my last serious illness prior to realising I couldn’t smell anything was way back in the late 90’s when I was hospitalised with Flu. By this time I had been diagnosed with Ps although it was only on my shins and not that bad. A good bit of sun would see it off for a month or so.

I think it was around the same time I was being investigated for a swallowing problem and the Consultant had a camera up my nose to view my throat and he had an interest in my lack of smell. There were no polyps so that was ruled out. He put it down to being 'just one of those things' ( I hate it when Doctors say that. Why can't they just say I'm sorry I don't know), possibly nerve damage or even my brain deciding to ignore any signals from my nose. Not a lot of help. It may or may not return but it wasn’t flagging any underlying crisis so I was discharged.

As time has gone by I do get some flashes of smell – but – more often than not it raises more questions. Some smells can come across as quite powerful but Mrs John informs me that it is actually quite subtle. Others come across as one smell when they are actually something else.

Heavy solvents and warm protein based products are starting to come through so maybe there is some hope. To be honest I don’t really miss it.
What is weird though is it hasn't affected my sense of taste apart from rendering Merlot like vinegar which is a shame as I used to like Merlot but most other reds are still eminently  quaffable .

Is it linked to Ps? Viral damage? Or just 'one of those things' I don't think we will ever know, but it is strange how several people that have Ps and its associates have suffered a loss of smell.

[Fred]

My sense of smell story.

This is a slightly odd tail. It manifested itself in Egypt on holiday 2009, they were fumigating one evening and Mrs John was commenting on how much it stank but I couldn't smell a thing. Up until this point I hadn't actually realised my sense of smell was to be found wanting. I haven’t had a bang to the head and my last serious illness prior to realising I couldn’t smell anything was way back in the late 90’s when I was hospitalised with Flu. By this time I had been diagnosed with Ps although it was only on my shins and not that bad. A good bit of sun would see it off for a month or so.

I think it was around the same time I was being investigated for a swallowing problem and the Consultant had a camera up my nose to view my throat and he had an interest in my lack of smell. There were no polyps so that was ruled out. He put it down to being 'just one of those things' ( I hate it when Doctors say that. Why can't they just say I'm sorry I don't know), possibly nerve damage or even my brain deciding to ignore any signals from my nose. Not a lot of help. It may or may not return but it wasn’t flagging any underlying crisis so I was discharged.

As time has gone by I do get some flashes of smell – but – more often than not it raises more questions. Some smells can come across as quite powerful but Mrs John informs me that it is actually quite subtle. Others come across as one smell when they are actually something else.

Heavy solvents and warm protein based products are starting to come through so maybe there is some hope. To be honest I don’t really miss it.
What is weird though is it hasn't affected my sense of taste apart from rendering Merlot like vinegar which is a shame as I used to like Merlot but most other reds are still eminently  quaffable .

Is it linked to Ps? Viral damage? Or just 'one of those things' I don't think we will ever know, but it is strange how several people that have Ps and its associates have suffered a loss of smell.

Thank you for that John. I've still not met anyone else that has lost their smell, there still doesn't seem to be an association with psoriasis and it's reassuring in some ways to know that you have it. This helps with the elimination of it being anything to do with the Bio's and give me a bit of comfort.

I like you have had everything ruled out and it does seem to be one of those things. I'm learning to live with it, but still find it annoying. I sometimes feel there is something there but when I concentrate to find it it's gone. Mrs Fred sometimes tells me to close my yes and sniff something, but I have yet to get anything.

I'm lucky with the Merlot as it still goes down well, I can't smell it but it does the job.   ........................ Actually thinking about it I started drinking more since losing my smell, but have eased up a bit again now.

They have told me it probably will never come back, but getting information from others with psoriasis is helping as it doesn't seem related. Hopefully this thread will help others and if anyone else has lost their smell please do post.

In closing I find it effects me more when I think or talk about it. I'm learning to live with it, but as I have nothing I find it sometimes very debilitating and also think my taste is fading too.  

Time for more Merlot that doesn't taste like vinegar.

Thank you for the input John.