RA and my hearing

[allanah]

So I went to audiology after some tests were done a few weeks ago.

I know my hearing has deteriorated but as an avid live music fan ( even tho I religiously wear ear defenders!) I thought it would be wear and tear loss.

However the senior audiologist saw me and said my eardrums are scarred from auto immune connective tissue type diseadisease. My nerve supply and conduction in middle ear has gone and it won't come back.

So they are trying aids on the outside of the ears to see if it helps a bit.

She was very nice tho and I just knew in the back of my mind I saw something before about RA and hearing.

Have any of you experience with behind ear aids that " go through the bone" not internal tho? Or RA and hearing loss?

Thanks in advance x

ps I'm off all ra drugs possibly until June after my sepsis but I'm recovering well. X

Allanah x

[Jora]

I've haven't been on the forum since I moved house in January, so apologies to anyone to whom I might otherwise have sent a supportive message.

Allánah (I don't know how that cheeky little accent crept in, but I think it looks rather stylish!), your post resonated with me. My hearing in right ear is definitely deteriorating. I thought maybe it was wax, but it isn't. My dread is osteo-necrosis of the jaw (a listed side effect of Rituximab), partly because I have very expensive .dental implants. Then I felt pain. the consultant suspected, but ruled out, Giant Cell Arteritis . He ordered x-rays of the jaw and I'm waiting for feedback about that. But I'm still suspicious about the ear itself. I had never considered, and wonder if the consultant has, damage to the connective tissue. Did you have any pain?

I do hope the aids help you a little. It must be very distressing for you.

I'll write my own update when I have the energy. Energy? What's that!

Jo X

[allanah in reply to Jora]

Been chatting to Helpline and they are going to see if what I have been told by audiology does happen in RA. I'll keep you all updated when I get sent links or advice from NRAS x

Glad you are well Jòra ! And did you buy that new bed when you moved?

[Jora in reply to allanah]

Thanks, Allanah

Actually, I'm not too well, but moving was absolutely the right decision. I love the little house. Lift being installed very soon, and my new studio. But I am pole-axed by fatigue and pain. My hands and wrists were so bad last week that I had to bring out the Buckingham. Still, I am alive, which sadly is more than I can say about too many of my friends.

I bought a pretty oak bedstead and a SIMBA mattress. johnlewis.com/simba-hybrid-... . The lovely bed, Morgan range, was in a sale and the double SIMBA (normally £600) was a display model. So a) it was half-price, b) it had gone through the smelly settling-in stage which so many reviews referred to. It's brilliant. And I'm proud of myself.

M&S Food is under two minutes away, as are my chemist, Waterstones, dry cleaners etc. At the end of my actual road (about 100 yards) is the best fruit and veg stall in west London. I actually walk more, as I go in and out a lot, and don't try to do everything in one go and get an Uber home.

But on a day like today, I long to be on the coast, breathing in unpolluted air, watching happy dogs bounding around. Ah well, I can't have it all. Even if i could afford it, having a second him would be too stressful and against my principles.

Take care of yourself. Jò (I love your reciprocal accent!)

[Hidden]

I have now got hearing aids and was told by my consultant that it is not the ra i have done research on this and found there is a small bone in the middle ear the can be affected the same as any joint in the body i would say yes Ra can affect your hearing

[allanah in reply to Hidden]

Ok . Will keep looking into it! They said auto immune scarring and nerve damage . I have RA diabetes asthma sjogrens all types of immune disorders ... I'll ask more when I see them x

[fastball]

I have ear trouble I am now nearly completely deaf in left ear, I was putting it down to Psoriasis. Could it be the Arthritis in PsA thats doing it. I always think i can feel skin in there? xx

Chris

[allanah in reply to fastball]

No idea fastball. Think it would mean a trip to doc if you are are hearing problems.

I put up the post to see if anyone else has been told this or whether this single aidiologist or my problem could be connected.

I am hoping Nras can give us some info e.g. it's not normally connected to ear problems or whether some of my other auto immune illnesses could be .

Will let you know when I speak to Rheumatology.

[Hidden in reply to allanah]

Hi dear A. Sympathies over this - it's just a case of never ending obstacles with this autoimmunity malarkey isn't it?

I don't have any significant hearing loss but I do have severe tinnitus which effects my enjoyment of music a lot now. Tinnitus counselling was mostly useless although she ruled out vestibular ear disease such as mennieres.

But she did say my Sjögren's prob responsible one way or another for noise phobia (hyperacusus) and tinnitus as ear canal dries out and very possibly TMD - (jaw arthritis) which my oral consultant confirmed that I have.

Both think Sjögren's responsible for everything but as you maybe know I also have secondary Raynauds so getting Scleroderma ruled out in a few weeks time hopefully. I know you have Sjögren's too and a mixed bag of CTDs with your RA so maybe this is a factor in your new hearing problems/ scarring?

The tinnitus counsellor told me not to use earplugs apart from at concerts because she said these will only aggravate the connective tissue disease in ears. Apparently Sjögren's means not enough wax forming to protect the ears - mine very dry. Also affected by decades of eczema which I know you suffer from too.

Currently spending a long weekend back north packing up more stuff from island home. On antibiotics for severe sinus infection - been going on for a month now and previous referrals to ENT keep bouncing back to GP or ear clinic who bounce it back to ENT as hearing is okay. Six referrals still not seen by ENT. Nose and throat not been okay for years now though (nose bleeds, sinus infections, sore throat, hard to swallow and hoarse) so I feel ENT people are a bit rotten not to just take a peek at my tubes at least! Best of luck with hearing aids - meant to be getting some anti tinnitus ones soon too. X

[allanah in reply to Hidden]

A lot of what you said made sense. She did mention not to use earplugs as it would worsen noises and did know about my sjogrens as well. And yes they always remark on how was free my ears are lol.

She did talk about connective tissue disease and autoimmune disease and I did tell her about the ear pain but that the dental hospital xrays should tmj joint inflammation.

Good luck with the packing up and I hope they sort out those sinuses for you sooner rather than later xx

[Someonesmother]

Glad you are on the mend, but not good news about hearing. I hope the hearing aids work.

[Victoria-NRAS Partner Moderator NRAS]

Hi Allanah

I have sent you a more detailed response by email. Essentially, there doesn't seem to be the same level of consensus around a link between hearing problems and RA as there is around something like eye conditions and RA. There haven't been a huge number of studies on this, the numbers in the studies have been quite small and they haven't all been in agreement. Having said that, most studies suggested that there could be a link, it's just hard to get further detail about what to expect if this happens. The best patient-article I found summarising the study information was this page on the Arthritis Foundation website:

arthritis.org/living-with-a...

I have sent you this, along with another link and the response from our medical advisor, but thought I would include some of this on here for anyone else with this query now or in the future.

I hope the hearing aids help, and that the information on what to expect will become clear when you have had a time to process the information you have been given so far and ask some more questions of your audiology and rheumatology teams.

Kind regards

Victoria

(NRAS)

[allanah in reply to Victoria-NRAS]

Thanks very much xx