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Lialda and Tinnitus?

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Ulcerative Colitis
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Posted Yesterday 5:51 PM (GMT 0)
Hello Healingwell Fam,

Its been a while since I've been on here, although I have continued to check in here and there. Overall, I am doing pretty well with my UC. Since my diagnosis I have calmed my nerves, basically been in remission and learned how to deal with UC much better.

Anyway, I was taking 4 pills of lialda for about a year... never got any instructions from my GI to lower my dose. I decided on my own I would start taking 3 pills, and have been on that for about another year....

I recently went to my GI for the first time since diagnosis and told him I lowered it to 3. He said this is like a vitamin, it is only activated in the colon and doesn't enter the blood stream. 3 or 4, doesn't matter.... then he proceeded to test my blood for kidney function. I thought this was a little stupid, if it doesn't enter the blood, why do i need a test?

Blood was normal.

But after my appointment i began having ringing in my ears. Its been making me miserable. Since the only Medication i take is Lialda, I looked it up and yes, Tinnitus is a side effect. Asked the GI and he said it is highly unlikely, and the ringing is from something else....

I am thinking about stoping my lialda for a little while to check, because these doctors are just salesmen and I honestly haven't spoke with a good doctor ever.

What do you think?

Regards,
Albert
Posted Yesterday 6:16 PM (GMT 0)
I can’t answer about Lialda and tinnitus. But I’ve had tinnitus for many years — about 30. Mine started after some kind of inner ear infection — I woke up one morning with absolutely no balance and bouncing off walls. The ringing started soon after.

It will absolutely drive you bonkers at first. I really sympathize. It’s so frustrating because you can’t escape it and just long for some silence. Definitely see an ENT dr.

I don’t think tinnitus goes away once you get it ( that’s just my experience— if it is Lialda maybe a medication switch could help?) It’s poorly understood and since it doesn’t affect your physical health (mental health is another story), there doesn’t seem to be much interest in a cure. Or maybe there isn’t one.

I will tell you that you will get used to it eventually. But it is definitely a rough road to get there. You could try an antidepressants or anti anxiety to calm you when you’ve reached the pulling your hair out point. There were times I just wanted to bang my head against a wall. It doesn’t bother me anymore even though recently it’s gotten a little louder. Most of the time I don’t notice it and I even had a hearing test about a year ago and they said my hearing was excellent (and I’d been afraid I wouldn’t be able to hear the high pitched sounds due to my own internal rings).

I wish you calm and hope yours is only temporary!
Posted Yesterday 7:44 PM (GMT 0)
darn, 30 years of tinnitus, I am sorry to hear that.

From what i understand about tinnitus, it goes away for a majority of people. I have also heard personal accounts from friends who had it for a number of months and it went away. Mine isn't very loud, I can only hear it in a silent room, or when I am in bed. Also, I didn't have any balance issues. Thanks
Posted Today 1:46 AM (GMT 0)
If you've been on the Lialda for years, what makes you think it's suddenly the cause of your tinnitus? I would not stop taking it.
Posted Today 3:33 AM (GMT 0)
Lialda has always made me slightly dizzy and gave me headaches since I began the medication. I don't remember ever having a headache in my life before I started Lialda, it was like a whole new experience for me. So I know that there are side effects. I am also not that big of a guy (5'9",160), and have been on a high dose for a long time.

Not positive that it is the cause, but there is no other clear cause, and it is my only medication, so I figured I would give it a try. I rather deal with GI problems then have tinnitus. Worst case, I will have to deal with a flare up. Best case, my tinnitus goes away and I have to switch meds. I have also read several posts on here of mesalamine causing ringing in the ears

Tomorrow I stop Lialda and will be 100% medication free. I will give it ~14-21 days before I decide if i want to get back on, I will post again when/if I find out more.

Post Edited (albear99) : 11/28/2019 8:39:39 PM (GMT-7)

Posted Today 4:33 AM (GMT 0)
Ok. Good luck. Let us know.
Posted Today 4:49 PM (GMT 0)
Yes let us know! I’ve been wondering if my migraines are worse because of my Apriso. I didn’t consider that it could be possibly connected to the louder ringing I’ve been experiencing lately. I’m considering dropping Apriso since I’m in remission but scared that it could have a negative effect on my happy remission.
Posted 11/30/2019 2:31 AM (GMT 0)
I would not recommend stopping lialda. Instead, switch to another brand of mesalamine. Your doc might have free 30 day supplies of another brand to try (got a few bottles myself that way over the years).
Posted 11/30/2019 6:59 AM (GMT 0)
Like UC, tinnitus can be very mild, or debilitating. I've had tinnitus since 1988 (no identifiable cause), and although it bothers me, it doesn't affect my general health. I would not risk losing my colon, or colon cancer by avoiding medications to stop the level of tinnitus I have.
On the other hand, I know someone whose tinnitus was so severe he could not sleep and became unable to work, or really function. That's worse than mild UC symptoms.
Posted 12/1/2019 7:15 PM (GMT 0)
This is so interesting. I have had tinnitus for some time ( with it getting worse now that I think about since starting lialda 2 years ago. I have just started Entocort EC. It will be Interesting to see if it makes a difference.
Posted 12/4/2019 2:34 PM (GMT 0)
Hey Ipoop,

In Lialda the salicylic acid would be what causes tinnitus. I wouldn't start a different 5-ASA that has the same ingredient. Salicylates have been known to cause tinnitus for sometime, hence my theory that it could be caused by Lialda.

So far its only been 2 days without Lialda and I can honestly say I am noticing a difference in the ringing/hissing. I'm sorry to hear people live with tinnitus, but I would never sacrifice one thing in order to feel better elsewhere. For me, if it goes away, i will never do another mesalamine again.

I am nervous about this, as I don't want to do any other meds but it is what it is. In the meantime, While I am doing this experiment, I have some hydrocortisone enemas on hand.

Post Edited (albear99) : 12/4/2019 7:44:29 AM (GMT-7)

Posted 12/4/2019 2:52 PM (GMT 0)
Tinnitus does sound like it would be horrible to deal with! I just wish we were all healthy and well. ugh.
Posted 12/4/2019 3:04 PM (GMT 0)
my tinnittiss seems to have it's own plan and schedule - it visits for a while, and then like any good guest, it leaves - works for me - I have never seen any correlation with anything so it just is -

99: I would suggest giving your no med experiment a week - then get back on the meds for a couple weeks before trying it again - imo, flaring is much more life altering than tinnitisss, although that is hard to judge for someone else - just go slow and steady is my advice -
Posted 12/5/2019 10:37 AM (GMT 0)
I have had tinnitus for 5 years. When it started I thought it had been result of using 5ASAs for decades.
So I decided to stop using 5ASAs for two months. It did not help at all.
After two months I reintroduced 5ASAs again. I believe there is different cause in my case.

My observation:

What helps: physical activity, hot bath, low stress, good sleep, excluding coffee(better sleep)

I have a suspicion that some parts of my inner ear or associated brain centre do not have enough bloodstream.
It might be caused by atherosclerosis. Hot bath or physical activity widen veins and inner ear/brain get more blood.
Tinnitus gets better temporary. But it is only my working hypothesis.
Posted 12/5/2019 4:04 PM (GMT 0)
Any chance you had a flu shot lately? I’ve had a mild to moderate tinnitus for years, before and after starting Lialda, but I had my flu shot last year and let me tell you, I thought I was going to go mad with how loud the ringing became. It’s possible that something else with your immune system has triggered the ringing if you were on Lialda for a year and doing just fine.
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