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A myRAteam Member asked a question 💭
Ottawa, ON

The condition is called phantosmia, you perceive a smell that does not exist in the environment. I typically smell ammonia, burnt toast, cigarettes or tire skid "burning rubber." It can last minutes, hours or days for me. Phantosmia can be from a number of causes. Mine is nothing more serious than mildly annoying. Last week, I smelled ammonia for 3 days and nights. This afternoon, it's cigarettes and no one here smokes in this house or ever has.

June 12
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Answer Summary

Members connected warmly over the experience of phantosmia, sharing that they too smell things like burnt toast, cannabis, cigarette smoke,... Read more

Members connected warmly over the experience of phantosmia, sharing that they too smell things like burnt toast, cannabis, cigarette smoke, forest fires, cigars, mothballs, and sawdust when nothing is actually there. Several members found comfort in knowing they are not alone, with one touching on how certain phantom smells feel like meaningful visits from late grandparents. A recurring theme was the mix of relief and humor in finally having a name for the experience, along with the added irony of former smokers finding phantom cigarette smells especially nauseating.

myRAteam

What an interesting experience to share — phantom smells that only you can detect, like ammonia for three days straight or cigarettes in a smoke-free home. That does sound mildly maddening, even if not serious!

Phantosmia (perceiving smells that aren't there) can actually be connected to RA in a couple of ways worth knowing Show Full Answer

What an interesting experience to share — phantom smells that only you can detect, like ammonia for three days straight or cigarettes in a smoke-free home. That does sound mildly maddening, even if not serious!

Phantosmia (perceiving smells that aren't there) can actually be connected to RA in a couple of ways worth knowing about:

- Medications like methotrexate are known to affect the sense of smell, which can sometimes cause altered or phantom smell perceptions
- Changes in liver function, a rare side effect of methotrexate, can also influence how smells are perceived
- Nutritional deficiencies — such as low zinc, B12, or other vitamins — which are more common with RA and its treatments, may also affect smell perception Since ammonia-like smells specifically can sometimes signal changes in how the body is processing toxins, it's worth mentioning this to a rheumatologist — not to alarm, just to keep them in the loop, especially if methotrexate is part of the treatment plan.

Other myRAteam members have reported unusual sensory experiences tied to their RA medications, so this is more common than people might think. Always check with your care team before making any changes to medications or supplements.

June 12
A myRAteam Member

Frank is accustomed to me smelling odd smells that aren't there. Everyone else thinks I'm crazy so I don't say anything. They'll think I'm crazier than I actually am.

June 12
A myRAteam Member

I often smell cigarette smoke before having a migraine.

June 12
A myRAteam Member

I have something similar but only on rare occasions, it’s either cigars, moth balls or saw dust that I smell . It usually happens in the car when I’m alone. This is comforting because my grandpa smoked cigars, grandma always put moth balls in their closet & the whole house smelled like moth balls. My other grandpa was a carpenter, so the sawdust reminds me of him. It’s just a reminder they are always close & I feel like they’re checking in on me.

June 12
A myRAteam Member

I have the phantom smells. I never made the connection with RA. Thank you for sharing.

June 12

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