RA and loss of hearing

[Sebastian247]

Hi there.

I wondered if anyone had experienced a loss of hearing, potentially due to their RA.

I developed RA a year ago, and am currently on MTX and prednisolone after Sulfasalazine didn't help.

Six months ago I lost hearing in one ear, literally over a couple of days, and developed tinnitus. My hearing came and went for a couple of days and then didn't come back. The loss and tinnitus is now permanent.

I saw an ENT consultant who believes my RA was the most likely cause. I had a steroid injection through the ear drum but it didn't help. The consultant rheumatologist was very sceptical of a connection between my RA and hearing loss.

Since then I've had numerous audiology tests and now have a single hearing aid. The ENT consultant is still of the opinion the RA was the most likely cause given my age, that it's only one ear and the loss of hearing was so sudden.

As if developing RA wasn't enough to cope with. I'm finding the hearing loss and associated tinnitus very hard to deal with, although the hearing aid does help.

I wondered if anyone else had experienced anything similar or had any information about it. My own research has been inconclusive regarding hearing and RA.

Thanks

Seb.

[MuppetBaby]

Hi Seb,

I don’t have a hearing loss but work as an Audiologist and yes RA can potentially cause a hearing loss. It is known as Autoimmune Inner Ear Disease (AIED). It’s rare but any AI condition can potentially cause it. They are unsure why but think it’s to do with inflammation and/or antibodies. It can also be caused by a virus (including COViD). If you look up AIED you will be able to find more information. Hope that helps 😊

[Sebastian247 in reply to MuppetBaby]

Hi Karen. Thank you so much for this. I can't believe my good fortune to have someone with your expertise reply.

I've found dealing with losing my hearing very hard to deal with and upsetting. I feel a bit pathetic about how much it's effecting me.

It all seemed so random and hard to comprehend, so having a name to the condition is a massive help.

Many thanks.

Seb.

[MuppetBaby in reply to Sebastian247]

Sorry to hear you’re struggling which is completely understandable as it is such a shock suddenly losing your hearing. People don’t realise how having a hearing loss in one ear can be quite debilitating and assume the other ear will compensate. Do you have a Hearing Therapist at your Audiology department? It may be worth asking as they can discuss tactics to help with your tinnitus if it’s bothersome as well as dealing with hearing loss in general.

[Sebastian247 in reply to MuppetBaby]

Thanks for your understanding Karen. It is such a change to my life and I haven't got used to it yet.

Yes I have spoken to a hearing therapist at the hospital. She was very encouraging, and explained I will adapt and be fine in time.

I don't think it is connected, but about two years ago I developed very significant balance problems. After investigation I was diagnosed with bilateral vestibular failure. If I closed my eyes or it's dark I simply can't keep my balance. If I try to walk with my eyes shut (a stupid thing to do I know) I fall over.

Since this recent hearing loss my balance has got worse and walking with eyes open requires constant concentration, and I stumble a lot.

Its all a bit much to deal with, added to the RA. I'll get used to my new normal in time, I just have periods of feeling a bit low about all of it.

I'm so grateful for your help and guidance. I've been reading about AIED and feel better informed thanks to you.

Seb.

[Garnacha in reply to MuppetBaby]

Ooh I recently had covid & my hearing was really affected, the pharmacist at my surgery told me over the phone it was probably due to congestion in my upper respiratory area, I'm still slightly deaf in my left ear & can hear a popping noise every so often, I'm assuming it's still clearing (sorry to jump on your post Sebastian247 )

[AgedCrone]

I’m quite a bit older than you…& I did have some hearing loss in one ear…but since I had two AZ vaccinations ….to which I had nasty side effects after both……my hearing in both ears has deteriorated rapidly…..so I am tending to the vaccinations rather than the disease being the culprit…..especially as my Rtx infusion last January has failed to control a flare I was starting before the infusion.My rheumatologist is sympathetic….but both he & my ENT surgeon can’t actually

confirm or deny what is causing it.

Of course I do appreciate age could be the culprit….but in my mind it is a nasty coincidence…..especially as I have had problems with my eyes as well.

Just got to plod on saying “What”? I guess ! 😟

[ABwn in reply to AgedCrone]

Had the same symptoms as you after the same jabs including eyes. MRI scan next month.

[AgedCrone in reply to ABwn]

I am realising that my deafness changes in intensity. I can sometimes hear pretty well without my hearing aid…but other days the sounds are distorted….I hear the sound but I can’t break it down in to words.

To my mind the ability to hear reasonably well is there….so why not all the time?

Have had ears syringed ….& prodded about …audiologist just Hmmms!

I haven’t really pursued it with ENT, as I have been preoccupied getting an eye problem sorted…..will now try to start on the hearing, but at my age the NHS won’t want to know…..so I will need to raid the piggy bank.

[ABwn in reply to AgedCrone]

I managed to get on NHS for ENT through GP. Naturally a queue but not too bad. Worth a try. Good luck.

[ABwn in reply to AgedCrone]

Forgot to say I'm what could be classed as an 'aged crone'.

[AgedCrone in reply to ABwn]

I am a really AC….we have got to stick together ……deaf or not!I will suss out the waiting times for an ENT referral.

I am ashamed to say I told a woman the other day who was rolling her eyes and muttering behind her useless mask that I was “deaf not daft”…. All I had asked was that she wrote down an appointment time,…& that was in a hospital!

I now have so much more empathy with people who are deaf for life.

[ABwn in reply to AgedCrone]

Completely agree with you. I find it very hard using the phone, especially as certain tones actually hurt. Good luck with a referral.

[Sebastian247 in reply to AgedCrone]

I'm sorry that you've also suffered with hearing problems too. Not knowing the exact cause and questioning whether it could really be coincidence or not is something I've struggled with too.

My symptoms of RA started three days after my first AZ vaccination. The rheumatologist thought it most likely the vaccination had triggered my RA, but that this was different from actually causing it.

I will never know for certain what caused me to develop RA, or the subsequent hearing loss. But the thought that I might not have developed either had I not had the vaccination is a troubling one.

I hope you are able to cope and do better than just plod on. You deserve much more than that. Seb.

[Funny-Bones]

Hi Seb,

I was diagnosed with RA aged 27 then when I was 31 I started with hearing loss almost overnight. I have profound hearing loss in my left ear and I’m very slowly losing it in my right (I’m 53 now). I have hearing aids in both ears and totally understand why you are struggling. It’s so debilitating to go from being able to hear clearly to suddenly losing a considerable amount of hearing.

I still struggle with it today, especially with the face mask situation. It’s affected my confidence and I just feel utterly stupid sometimes when I can’t understand what people are saying to me. I also feel like I’m missing out as I cannot follow a conversation in the pub or other social spaces. Half the time I just wing it with a nod or a smile and hope that I’m getting it right but all the time I’m thinking, “I haven’t a clue what you’re saying to me” 🤯 It’s so exhausting too and we can do without any more fatigue issues 🙄

Phone calls are difficult so I prefer to text if possible and I can’t be without subtitles when watching tv. Theatres and cinemas sometimes have captioned performances or a hearing loop system that you can borrow. I also have a portable extension speaker for my doorbell so that I can hear it elsewhere in the house.

I’ve always wondered if it was linked to RA but nobody has ever been able to give me a reason why I lost some of my hearing at such a young age. I had an MRI scan to check for an acoustic neuroma and that was thankfully clear. The ENT consultant said it was just one of those things so I’m reading your thread with interest, especially the comments from Karen about AIED which I’ve never heard of (if you pardon the pun 😉).

I wish you all the best Seb 😊

[Sebastian247 in reply to Funny-Bones]

Hi FB (love the name by the way, so appropriate).

I'm so sorry that you developed RA at such a young age and then to lose your hearing too. It's awful.

I can so relate to your experiences of not being able to hear conversations and just nodding. I do exactly the same now. It's not great is it. I don't know what I might be agreeing too...

My family are also struggling to adapt to my new normal. They must get so fed up with me saying I can't hear you, when they mumble or speak facing away from me. It's tough for everyone.

Face coverings are another new challenge. I keep getting the ear loop tangled around my new hearing aid and it pings off my ear! I'm lucky I haven't lost or damaged it yet.

I don't know why AIED wasn't mentioned to me before. The ENT consultant obviously had it in mind. The audiologist who fitted my hearing aid said they'd never heard of a connection between RA and hearing loss, that the ENT consultant was suggesting.

I'm so grateful to Karen for naming the condition. I know proving the connection to RA is impossible, but for me it's another coincidence that's hard to ignore.

I've read about AIED since Karen mentioned it. If you haven't yet I'd recommend googling it. It's enlightening. Given your young age when you lost your hearing, the connection to RA seems highly plausible to me.

I'm waiting for an MRI scan now. Fingers crossed it's ok. Many thanks for sharing your experiences. It helps knowing other people do and feel the same.

Best wishes.

Seb.

[ABwn]

Yes, I suffered hearing loss virtually overnight. I'd put it down to a slight infection. One year later and I'm now going for an MRI scan next month. Have now got an infection in the other ear. I had put it down to the Covid jab. No-one has, as yet, suggested RA. 🤔

[Sebastian247 in reply to ABwn]

Hi AB.

I'm not surprised no one suggested the vaccination might be a potential cause. I feel there has been a reluctance to consider such side effects. Especially if the side effect is a condition that's not super rare, like auto immune disorders.

As I've posted above, I developed RA symptoms three days after my first AZ vaccination, and six months later was diagnosed with RA.

The rheumatologist thinks the vaccine triggered the RA, but that I was probably genetically predisposed to RA. So if the vaccine hadn't triggered it, something else might have in the future.

Trouble is that also means had I not had the vaccination I might not have developed RA, and therefore might not have lost my hearing. It's a horrible possible chain of events.

Just to be clear, I'm not an anti vaxer, and despite my reaction, I've had a second vaccination and boosters. Glutton for punishment I guess... But I didn't experience any more problems after the second and third doses.

Best wishes and thanks for sharing your experiences. Seb.

[ABwn in reply to Sebastian247]

Hi Seb - I'm not an anti-vaxer either. So far I've had 4 and waiting to hear when to go for 5th!!! Have had RA for a number of years now and have learnt to live with it most of the time. 😊 Take care and make the most of life.

[silentpool]

Hi SebI was 24 when I lost the hearing in my right ear overnight when I caught mumps. I was diagnosed with RA when I was 61. The unilateral hearing loss has always been a real handicap, made worse by lack of understanding and awareness from health professionals, my family friends and everyone I meet. Loss of directional sound is very hard, especially now that I am alone with no-one to tell me where strange noises are coming from, especially at night. As I get older the effect on my balance is getting worse, with greater risks of falls. There are things that can help. A CROS hearing aid might be useful in social situations. Do get advice from your audiologist and find out if your local council has a hearing loss advisory service. As with RA it helps to have some-one to talk to about the difficulties you face. You may need to ask lots of people the same questions until you find one who actually knows anything about unilateral hearing loss. I send you sympathy and wish you luck in finding ways to cope.

[Sebastian247 in reply to silentpool]

Morning SP. Thanks for your message and kindness. It's tragic you lost hearing so young, and have RA to cope with too.

Your right about the problems with directional sound. I'm finding it very disorientating. Sounds often mistakenly appear to come from the opposite direction.

I've posted above about developing bilateral vestibular failure two years ago, before I got RA. My balance was pretty bad then, but this recent hearing loss has made it even worse. Without light or my eyes open I constantly stumble and fall over.

I cope but going for a walk is hard work because of the constant need to concentrate so hard on keeping my balance.

Thanks for the advice on the hearing aid and getting good advice. I have spoken to an NHS hearing therapist who's been really great. It's a shame the support is so short lived though. I'll investigate if the council offer any help.

Look after yourself too. Best wishes.

Seb.

[silentpool in reply to Sebastian247]

Another suggestion Seb - walking poles. I started using them to take the pressure off my knees but they are really good for balance too. Getting out into the countryside really does make me feel less stressed, and it's easier to have a conversation away from traffic noise. I just got a cheap pair off the internet and they have made a real difference

[Sebastian247 in reply to silentpool]

Hi SP. I've been meaning to say thanks for the suggestion. I hadn't thought about walking poles for both knee pain and balance. Great idea.

Best wishes.

Seb.

[Rachel43]

Hi. Yes I’ve suffered hearing loss. Had a mri scan and now have a hearing aid. They said it was due to my RA. Massive shock and although I wear the hearing aid I still struggle. When I’m tired it seems to be even worse. Feel like I’m massively missing out on part of life.

[Sebastian247 in reply to Rachel43]

Hi Rachel. You're the first person I've heard from who's had their hearing loss definitely connected to their RA.

I'm like you. Shocked that it could happen. I went for months after I lost my hearing being prescribed treatments that were ineffective, instead of being rapidly referred to ENT.

When I did see the ENT consultant they told me that a steroid injection into the inner ear soon after the hearing loss occurs can sometimes restore hearing.

I had the injection months later. It didn't help, and the consultant said it was probably too late but he'd try it anyway.

I think it's very poor GPs are not aware of the hearing loss link to RA, so RA sufferes can immediately be referred to ENT. Had only I known it might have saved my hearing.

My audiologist advised me that if I start to suffer hearing loss in my other ear to immediately go to A&E and request to be seen by ENT so I get the steroid injection quickly.

When I first lost my hearing I had a terrible panic attack. I felt I was losing touch with the outside world and couldn't communicate. Like you I'm still struggling with the change and my ear feels constantly full which is really unpleasant.

I hope things do get better for you. Thanks for letting me know about your experience. It's so appreciated.

Seb.

[Happy5]

Hard to say I had tinnitus quite few years before developing RA, hearing in the ear also less good. Had hearing test but good for my age. On MTX injections and would say tinnitus is more pronounced, but hearing still the same.

[Blackberrywine]

I've had two friends who lost hearing after covid jabs. Apparently it is one of the known possible side effects. They don't have RA.

My own hearing is a bit sketchy, but I've not had jabs.

[Sebastian247 in reply to Blackberrywine]

I had no idea it was a possible side effect. Thanks for sharing.

Seb.