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9 years on Imuran/Aza. Could it have been hiding other issues?

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Ulcerative Colitis
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Posted 8/14/2021 1:51 PM (GMT -5)
UC diagnosis 2011. Imuran started in 2012, 150mg/day. Kept UC in remission all this time.

This year, GI doc advised I should try to wean off Imuran (due to long term lymphoma risk) and see how I manage just on Lialda. Dropped to 100mg/day and then to 50mg/day over a period of time.

UC has been staying under control with less and less Imuran being taken, so no issues in the colon.

But have started to notice some odd side issues:
- Upper respiratory congestion. Feels like a very light head cold and sudafed has no effect. Sneezing feels very "unsatisfying".. does not seem to clear out the cob webs like it used to.
- Brief loss of taste, now skewed sense of taste (metallic at one point, now sweet)
- Brief loss of smell, mostly recovered

Sounds like covid right? Took all 3 tests (rapid, PCR, antibody) and came back negative on all.

Now concerned that, during these past 9 years when I was on 150mg/day of Imuran, maybe my body developed an issue that is now only coming to surface since the Imuran dosage is lower and not able to suppress whatever it is.
Posted 8/15/2021 9:48 AM (GMT -5)
Hi Dinkydonuts,

How long have you had the congestion for? Did it start at the same time as reducing the dosage?

I wasn't on Aza for long due to side effects so don't have any personal experience of side effects of withdrawing from Azathioprine after long term usage (it was the other way round for me - Aza was causing the side effects which were resolved by coming off it!) but maybe some other forum members have experience of this.
Posted 8/15/2021 2:28 PM (GMT -5)
The congestion/smell/taste issues started around 7 days after I did my first 50mg taper (150mg to 100mg daily).

The symptoms have not gotten any worse going from 100mg to 50mg daily though.
Posted 8/15/2021 4:15 PM (GMT -5)
Is it possible you could have nasal polyps? I had nasal polyps surgically removed a couple of years ago to regain my sense of smell, and so I could breathe through my nose again. I googled and it does look like there was some research on using Azathioprine to treat nasal polyps:

https://pubmed.ncbi.nlm.nih.gov/30748107/

As any salicylate, including mesalazine tablets can cause polyps to grow it's possible that the combination of coming off Aza (which was suppressing them) and increasing Lialda (which can cause polyps to increase in size) could've exacerbated things if you do have nasal polyps.

If symptoms persist, and it's not just a one off viral infection I'd suggest you get checked by an ENT specialist to rule in / out nasal polyps. If you do have them you can try to shrink them with a nasal steroid spray, or have them removed surgically.

Post Edited (UCyousee) : 8/15/2021 3:24:44 PM (GMT-6)

Posted 8/15/2021 5:06 PM (GMT -5)
Interesting! Thank you for the suggestion and I will see if that could be my issue.
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