Psoriasis and loss of smell

[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.