Hi all. I am just wondering if anyone with lupus have any issues with their hearing. My GP thought during recent continuous flares this is affecting my hearing. I went for a hearing test and was told I had 40% less hearing and I could either buy a hearing aid for £500 or get referred to GP. I went for the second option.
I am just shocked that there was no other advice but old age. I am 55 y o. No advice to get further investigations.
Has anyone else had issues with their hearing following on from flares. BTW still going through a flare.
Thanks 😊
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Jamaica21
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Yes! Hi Jamaica21, I was prescribed 40mg steroids for a week for sudden near-total hearing loss in one ear....being wary of new meds (having had severe adverse reactions!), I took 10 one day then 10 the next then 20, and my hearing came back to what it was on 20 for a few days....this was on the back of severe-to-moderate hearing loss (total deafness at the highest human frequencies) in a very similar curve to old-age presbycusis, first diagnosed by a high-street optician since GPs disregarded my tinnitus over the course of years, being 40-50 years old, then confirmed by the audiologist
I was provided with NHS hearing aids, but they don't help except for watching tv or in a one-to-one conversation...no good for cafes with background noise etc
Cut to the chase: there is research showing it's common in lupus (27%: pubmed.ncbi.nlm.nih.gov/336... ), but mostly lost amongst the myriad of other symptoms, and slow-progressing so we don't know it's gone....till it's well-gone....
There is also research saying lupus patients should have routine hearing tests as part of their monitoring
ENT#1 went with the prevailing knowledge of a short course of high-dose steroids to address sudden deteriorating because it's irreversible, and put that in a letter....when it happened to me, coincidentally I had an appt with ENT #2, who refused to prescribe....so I stopped off at A&E, who did, based on ENT#1's letter....had my six-month review with rheumy a few days later, and he was shouting down the phone at me that I should NOT have steroids....and that there is no such thing as lupus-related hearing loss...I sent him links to the science....rheumy#2 (same hospital) agreed...rheumy#3 said anything's possible in lupus
overnighthearingloss will agree, sudden hearing loss means a trip to A&E straight away, from ANY cause...if it's lupus, treatment has to be swift....as far as treatment for increasing deafness during flares goes, think the jury's still out but steroids is the only treatment when its lupus-related according to the research
I'll refresh my list of links to research papers and post them...so glad you posted on the topic! It'll be interesting to see how many are affected! Or haven't linked it to lupus!
Also, hearing loss in those under 60 (I think!) should start with an ENT referral, according to a NICE guideline,and if all other causes are ruled out, then it's lupus!...I'll try and find that too!
Thank you so much for your reply. Very interesting to see the rheumys are not all in agreement. I have my six month review next month so will see what he says. My GP is also referring me to ENT. I have started steroids 10mg so will see if that makes a difference also.
Really appreciate the link you've sent and will read now.
Hi Jamaica21, I have hearing loss. The rheumatologist I had at the time was convinced it was from Plaquenil and insisted I stop taking it immediately., but follow up with an ENT. My loss is tonal so I hear somethings and also seems to be worse at times which to me seems from inflammation. Anyway, the ENT was not convinced it was from Plquenil, but thought from lupus. While off of the Plaquenil, my lupus symptoms got worse and I developed A-Fib. The ENT felt that the Plaquenil was probably not the culprit and that being off of it was affecting my quality of life. He wrote a letter to my new rheumatologist ( other one who I did like got sick and had to quit practicing) to let me go back on the Plaquenil. By this point, I ended up on prednisone, methotrexate as well as Plaquenil .
In my opionion, lupus does affect hearing. In the beginning, I was not aware of it, but my family was. At a concert with a tenor singing, I could hear the singing, but when he talked, I couldn't understand anything he said. People were laughing and enjoying his banter. I finally asked my granddaughter and daughter if they could hear what he was saying and, of course, they could.
I think it is a symptom that is missed or for some reason, not linked to lupus. I don't have any ansers to help, but hope this helps a little.
Hi Pumpkin2009I was in the same situation where my family said I wasn't hearing them or having the TV too loud. I secretly started using subtitles. Unable to get tested due to the pandemic and ENT not accepting new referrals.
I am already on plaqueneil and methotrexate and started prednisone yesterday.
Feeling reassured I am not alone. Thanks so much for your reply. I've got some reading to do now.
Yes indeed! BUT there is brand new research saying it can be lupus-related, should be investigated, and monitored. I was so excited I've copied it all in below! xxx
Hearing loss in patients with systemic lupus erythematosus: A systematic review and meta-analysis 2021
Conclusion: Compared to age-matched control, patients with SLE have increased odds of HL, which primarily manifests at low frequencies. Therefore, this patient population requires greater audiologic attention.
Association of systemic lupus erythematosus with hearing loss: a systemic review and meta-analysis 2021
The significantly increased odds of SNHL in SLE persisted even after sensitivity analysis. In conclusion, SLE is significantly associated with SNHL; SLE is not associated with CHL, while, due to lack of data, we could not reach a conclusion regarding the odds of MHL in SLE patients. Pure tone audiometry as a screening test and follow-up test in SLE patients could be of essence. Management and prognosis of hearing loss in SLE patients should be discussed.
Sudden Sensorineural Hearing Loss in Systemic Lupus Erythematosus and Antiphospholipid Syndrome: A Clinical Review 2020
Results: In patients with SLE, bilateral involvement was frequent. Antiphospholipid antibodies were positive in the majority of the patients. Corticosteroids were the mainstay of the treatment. The auditory prognosis was poor with total hearing loss recovery reached in only 22% of patients. On the other hand, most of the patients with SSNHL and APS were males and presented associated symptoms such as vertigo, tinnitus and/or headache, 75% had bilateral disease. Lupus anticoagulant and aCL were found in equal proportions, all patients were anticoagulated, and aspirin was associated in 25% of the cases. Complete resolution or improvement of symptoms was observed in 25% of the patients.
Conclusion: Sudden sensorineural hearing loss, can be a clinical feature of SLE and APS. Treating physicians should be aware of this devastating complication, especially when bilateral involvement occurs.
Bilateral sudden sensorineural hearing loss as a presenting feature of systemic lupus erythematosus: Case report and brief review of other published cases 2016
Discussion: Sudden sensorineural hearing loss in systemic lupus erythematosus is seemingly more frequently associated with severe systemic involvement and antiphospholipid antibodies may be present. Although management remains empirical, the high risk of permanent hearing impairment seems to justify emergency treatment with high-dose corticosteroids. When the clinical and laboratory criteria of antiphospholipid syndrome are met, antiplatelets agents or anticoagulation therapy shall be considered.
The Role of Autoimmunity in the Pathogenesis of Sudden Sensorineural Hearing Loss 2018
Glucocorticoids have remained the main stay of treatment over the past four decades since McCabe [14] first treated SSHL with glucocorticoids, and the symptoms of patients were improved significantly. Owing to the systemic side effects of long-term treatment with glucocorticoids, other therapeutic methods also have been investigated. Ruckenstein et al. [56] and Trune et al. [57] used MRL/lpr mice to show that prednisolone can protect against hearing loss. In addition, Satoh et al. [58] and Wang et al. [59] used etanercept, a TNF-α antagonist, to treat SSHL and showed that it can reduce inflammation in the inner ear and prevent hearing loss. Clinically, Xenellis et al. [60] have shown that the intratympanic injection of steroids is a safe and effective method for SSHL treatment, and Haynes et al. [61] have shown that intratympanic injection of dexamethasone can also improve hearing in SSHL patients when systemic medications fail. Furthermore, Battaglia et al. [62] used a combination therapy of intratympanic dexamethasone with high-dose prednisone taper for SSHL and showed that the patients receiving the combination therapy had significant improvements in speech-discrimination score and pure-tone average and recovered their hearing quickly. More recently, azathioprine has been confirmed to maintain the hearing threshold, decrease the risk of relapse, and slow down the rate at which patients relapse [63].
The evidence to date suggests that autoimmune SSHL is mainly mediated by autoantibodies or T cells or by both. As autoimmune reactions are increasingly considered to be a cause of SSHL, animal models and clinical trials have shown that autoimmune processes cause damage to the inner ear through various mechanisms. Humoral immunity and cellular immune-mediated autoimmune damage have both been shown to play a role in the pathogenesis of autoimmune hearing loss. Although the precise diagnosis of autoimmune SSHL is still difficult, the response to immunosuppressive therapy is generally positive for these patients. Therefore, the immune mechanism of SSHL needs further study in order to identify specific antigens of the inner ear and specific diagnostic markers that can provide a more accurate and timely diagnosis and contribute to a more effective treatment plan.
Sensorineural dysacusis in patients with systemic lupus erythematosus 2007
In conclusion, an adequate investigation of auditory symptoms is important during the follow-up of patients with SLE, since manifestations of the auditory apparatus and sensorineural hearing loss can affect a significant proportion of patients.
eekt, Wonderful information. I so wish doctors had time or motivation to look into research when they have a patient with something that maybe isn't in the box. I am going to print out this post.
Hooray, yes, I'm going to use it in my GMC complaint against the rheumy who shouted at me saying hearing loss is not lupus-related! He's a 'that's not lupus' kinda guy for everything but joints, rash and pleurisy...thank you Jamaica21 for raising the topic! xxx
Thank you, that's really interesting. I was found to be deaf at 36, after I'd had my second son. My health definitely took a turn for the worse then, but with very vague issues, like feeling ' fluey' occasionally. I wasn't diagnosed with lupus until about 20 years later. However, my mum, dad, my brother and my son also had or have hearing loss, so there's probably a genetic element.I get my hearing aids from Specsavers and they Bluetooth to the TV which is wonderful. Restaurants etc can still be a struggle, because the acoustics are awful. I've never noticed that my hearing is worse when my lupus is flaring.
Hi, I've been suffering from tinnitus for years and have bilateral sensorineural hearing loss. I'm only in my 40s. I was referred through specsavers onto gp who referred me to a a clinic they referred me on to ENT. Just recently been seen there and they found some tympanosclerosis which is caused by inflammation but I've never had ear infections. I've just got hearing aids and been referred for more tests can't remember what its called. I've already had brain MRI so don't need another one. Hopefully if you gp refers you on ENT will investigate it further x
Sorry to hear you're not feeling well, I hope your flare settles soon!
I was diagnosed with SLE last November and I have found that my hearing has got worse. I haven't yet has this checked out and wasn't sure it was related my lupus but I will definitely go to my GP now! Thank you for sharing it has been really useful to read through all the comments.
Hi Simbob appreciate your kind words. I thought it was a silly question but the replies state otherwise. Very informative info provided.Your a newbie I hope your lupus journey is not too bumpy.
Hi, I struggle with hearing especially if there is background noise. My first test they said I had some hearing loss and would benefit from a hearing aid at a cost of £1000. Since then I’ve had other tests done at more reputable places and the hospital who have confirmed that my hearing is very good. But I am still not sure what is going on as my family are always having a go at me because of not hearing what they say clearly. I just put it down to brain fog.
Hi there,I’m 36 and I’ve been pretty deaf since 2010 onwards but diagnosed with lupus in 2017. It’s proven to be linked; unfortunately a lot of our problems (with our kidneys, our livers, our hearts and our brains and with other health issues) are related to lupus. I’ve always had tinnitus and my GP said it was related (he’s very good and interested in lupus). I know hearing aids are expensive but I bought good ones with Bluetooth as I couldn’t manage without them. Luckily I could afford it. I don’t know what’s available on the nhs. Basically it’s a huge pain in the arse but at least we’re all in it together!
Hello I have had lupus over 10 years and it does seem like it is affecting my hearing , does anybody know if it is a specific type of hearing test? I have a very hard time hearing when there is background noise. Meaning that if the TV is on I cannot hear what my husband only about eight feet away. It is extremely frustrating I feel like we never ever get a break. Actually maybe not hearing my husband sometimes is a break LOL😁
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