Health Boards
Tue-24-03-2015, 10:16 AM
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
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