Infliximab and hearing loss

[Lulu24]

Hi everyone, I'm a newbie. Often view the site but thought I would join and ask some advice today, as it's been a tough day!

A bit of back ground, I was dignosed with crohns in 2005 at age 16, so was always a bit of a struggle with school, sixth form then Uni but I worked around it. I have severe crohns which I have never really been in remission from, and tried practically every medicine going, always lasting a few months then losing response. I was on weekly humira pens for 2 years (and finally thought something was working) but then started getting a reaction to it and had to stop.

So from May 2013 I have been on Infliximab infusions which have been amazing and it is the best I have felt crohns wise since I can remember, I would almost say the past few months I have had a 'normal' lifestyle. But and it's a very big but, in September 2013 I burst my eardrum and went completely deaf in my right ear, thinking this was totally unrelated to my crohns as my GP or Specialist didn't seem concerned, I patiently waited until today (21st Jan 2014) for my hospital appointment at ENT. Having still been completely deaf in my right ear for the last 5 month. To be told today the severity of the hearing loss must be linked to the infliximab and my crohns and I will have to have a hearing aid, I'm 24 and this just feels like earth shattering news to me. I have dealt with everything crohns throws my way but this one is hard to handle.

Has any one else experienced hearing loss as a side effect of infliximab and is there any way my hearing will come back??

Thanks
Lulu24

 

[Jennifer]

Hi Lulu24, sorry for the late reply. I'm sorry you're go through this. :hug: This is the first time I've seen this mentioned on the forum. Since you're on Remicade, the possible cause that I can think of is an infection which biologics can make people more prone to getting. There are possible treatments for it here: http://www.localhealth.com/article/perforated-eardrum-1/treatments. Did you notice anything at all before you lost your hearing like pain, excessive discharge, ringing in your ears or dizzy spells etc? Remicade can also slow down the healing process so you may want to talk to your GI and ENT about the benefits of taking Remicade for your Crohn's vs possibly regaining your hearing if your were to stop Remicade. I honestly don't know if your hearing will come back and I hope that it does. Make sure you get all the info you can before going through surgery to try and repair it.

 

[rrhood1]

I know my hearing is changed since I started Remicade. I had a hearing test and everything was normal but I've had tinnitus for 2 years now (since starting Remicade) and I've had hearing loss on and off during that time.

 

[Lulu24]

Hi ladies, thank you for your posts. I just feel like I'm between a rock and a hard place at the moment I have ENT telling me that it's the infliximab and I should stop it then have my GI telling me it's not and I should take it. Although having spoken to GI yesterday he seems to think it is more likely the crohns that has caused the hearing loss opposed to the medication. As apparently hearing loss is quite common in crohns although it's very rare to go completely deaf people just notice a slight reduction of hearing.

No nothing gave me any warning signs of my hearing reducing Jennifer, it was literally a split second n I was like ooo I can't hear out of my ear, then followed the ear infection and burst ear drum so all this time I put the hearing loss down to that.

My biggest fear is that my left ear is going to go aswel and ill be completely deaf. Alison do you think It could be your crohns and not the medication that is causing the hearing changes? Is ur crohns still really active on inliximab, or have u noticed an improvement in your health/hearibg? As my GI said at the time I changed my medication may/June 2013 the crohns was really active and my hearing went in September so he think this followed on from the crohns, and with my crohns being the best it has been it's a good sign and hopefully it may not effect my other ear. I'm just so scared of being totally deaf and never being able to hear all the silly little things that I certainly take for granted.

Lucy

 

[rrhood1]

Remicade has done wonders for me. Humira and Imuran were failures (just felt sicker although my GI said the Humira did wonders for my gut). It could be the Crohns instead of the Humira. The ENT I saw was a total loser. Knew nothing about Crohns and how it can effect the different parts of the body. My Crohns was in remission for the last 4 months and I'm convinced that it is due to the Remicade. Like you though I would be scared to lose my hearing. Any chance your GI knows someone that deals with ENT and Crohns? Maybe at a local university?

 

[Lulu24]

It has me too that's why I was soo disappointed to hear (I'm sure theres a joke there somewhere) that I should stop the infliximab as my symptoms are practically none existent at at minute and have been for the last few months. Which hasnt happened in the last 9 years. When I was on the humira apparently it never worked as it should have, hence why it was stopped but I was also a bit of a medical mystery to them as I had weird side effects, and even the people from the drug company came to watch the reaction I got as I used to get hives straight after injecting and a huge red lump at the site. So had to have anti histamines. on stippin the humira as the crohns was so active it does make sense that it's the crohns and not the infliximab effecting my ear....ti be honest without actually saying anything I think my GI was a bit miffed with what the ENT had said and he was going to contact the main consultant at the ear clinic not the registrar that I saw. But guess I just have to trust my GI as he is a good guy and I do belive that he will sort something. Just can't help stressing and worrying about ny ither ear, and as you know that's the worst bloody thing to trigger a flare up (well for me anyway).

How come you had to see ENT? Was that crohns related?

 

[rrhood1]

I've had a number of incidents of vertigo - really bad ones - dizziness, nausea and unable to do anything but sit quietly. Also tinnitus constantly. So my GP's associate had me see an ENT. Unfortunately he was one of those types that knows nothing about Crohns & isn't interested in learning. Took one look at my hearing test results and a quick look in my ears & said I was fine and not to worry about it. So the incidents of vertigo come and go still. I still go deaf in one ear on occasion - very odd sensation. It's probably genetic as my dad had it happen. He was never diagnosed with Crohns but died of bowel cancer. I suspect he had Crohns all along but was un-diagnosed. They caught my Crohns during my 5 year colonoscopy. My sisters & I had been told to have a colonoscopy every 5 years to check for colon cancer.

 

[Lulu24]

Sorry for long delay in reply...no Internet connection!!
I kind of think the registrar that I saw at ENT was one of those types just seen Crohn's in my file and put everything down to that and my medicine. So annoying isn't it, GP's tend to do exactly the same. How's things with the vertigo? Are you getting a second opinion as it doesn't seem right that you should just have to deal with severe bouts of vertigo aswell, crohns is enough to deal with on it's own. Surely they can do something.

Iv kind of got my head around the whole hearing aid thing now just got to get on with it I guess although the constant ringing in my ear is driving me crazy, hopefully that might reduce when I get my hearing aid in 8weeks. I saw an audiologist last Friday and he was really nice and told me about lots of different options and causes and it could b down to an ear infection that my hearing has gone and nothing to do with Crohn's but I'm still waiting for an MRI to fine out the actual cause, although I'm feeling a bit more optimistic. So you should definitely get a second option because for me speaking to someone different has made the world of difference.

 

[Jennifer]

Let us know what the MRI says.

 

[swargo01]

Hi, my 20 year old daughter with Crohns-like symptoms in the last 6 months has also incurred a 60% bilateral hearing loss in the same timeframe. The ENT says bad heridity, I have read today that immediate treatment with steriods might limit or even reverse the damage. What do you know?

 

[warrior2]

I have been waiting to hear about others with IBD, who suffered hearing loss.. but was it a pop in ear drum? from loud noise? didn't it heal and audio never ever came back? I am a bit confused at the time frame of her hearing loss and popped ear drum. That being said, doesn't help the situation.
I have had IBD for over 25 yrs. ( am 55 ) at age 25 I simply woke up deaf in one ear, vertigo and visually seeing double. "auto immune response". I researched articles "ibd and hearing loss". yep. rare. but yes an association. While at hospital for left ear deafness, right ear went deaf one week later. Dx" cogans syndrome".. While you can prepare yourself for an IBD life, nothing prepares you for deafness, profound deafness.
Inflammation can strike any part of your body. IBD is the culprit. controlling it, will definitely control other symptoms. Stay on the remicade. it's not a factor and likely will keep other inflammatory issues at bay. Find out why drum broke, is healing, if so why isn't working? there maybe a surgery to fix it or replace it if its not relaying any sounds.
Being deaf is not the end of the world. technology has greatly improved with digital hearing aids and cochlear implants.. caption t.v. keep IBD at bay by all means and your health will be ok. I later found out I waited too long to get help, which would of steroids. very small window of opportunity to regain hearing loss like this. 3 weeks I think I was told. I waited two months. NY doctors were throwing every med at me. I dont recall having a flare of my IBD-colitis, back then. IT now been half my life living with Crohn's. google cogans syndrome. best of luck.

 

[Trysha]

I barely got through the first three months of Remicade but I did have hearing loss at that time .,the remicade had to be discontinued since I was getting bad reactions to it.
Until reading these posts I had no idea the hearing loss could be attributed to the remicade.
I did have some earache and also two severe bouts of vertigo...the doctor prescribed antibiotic and it went away.
Recently MRI showed a small collection of fluid behind the right ear ..the ENT passed it off as artefact!!
I had moderate hearing loss and wear hearing aids (very expensive) most of the time.
Someone should be taking a serious look at all this eg the drug companies...they certainly have the money to undertake such studies.
Trysha

 

[aypues]

It's weird, I've had some mild hearing loss too. I thought it started before the Remicade began, but it came back recently. I've been through so many different treatments this year it was hard for me to pinpoint the episode that started it. Luckily it's only been mild, and only on one ear, but it does bother me. I have a family history of Meniere's disease, so there's that, but I don't have it.

 

[warrior2]

Yes, a mixed bag of nuts we are.. only can share experiences like this.. the hearing loss angle with IBD has been my only source of comfort knowing "this caused it". I was 25 when this wrench threw itself into my life..since the data is limited and rare, no one wants to hear anything about IBD and hearing loss. I there are drug know to effect hearing. I believe it's gentmiacin?..I quizzed my doctor back then. He said they were careful abouot administering it.

Another angle was IBD is limited to digestive tract only. I don't believe that. U get back problems with it, knees, arthitis, eye problems.

Meneries, huh? family history? possible. I had no history on hearing loss in my family whatsoever. Then came IBD .

tysha and aypues, lulu24, nice to hear from you. keep an eye on your ears, getting checks ups and noting any changes. thanks for chiming in. I don't either of you need to learn sign language or find a bunch of new friends. bless yas.