Tinnitus with HCQ?

[redmaggie]

Hi there, has anyone experienced increased tinnitus or new onset tinnitus with hydroxychloroquine? I have had tinnitus for 15 years, and have recently started my second trial of HCQ - but I think it has made my ears worse. It's a know side effect, but I cannot find mention of how often it happens. I'm taken Zentiva, and have no other side effects. thanks!

[amc282]

I am on HCQ and it has increased my tinnitus. When I noticed it encroaching into my daily life more often, I contacted an ENT who poopooed the connection. My research says there is a connection. I notice it is worse when I am under stress as well. That all bing said, HCQ helps so much with my pain and fatigue that I will carry on.

[Chris21 in reply to amc282]

I’ve developed tinitus over the last few years, not too bad it’s more a constant buzz that I’ve learnt to ignore. HCQ may have contributed to it, but for me personally I think it’s possibly because I’m using my iPods a lot more these days.

[amc282 in reply to Chris21]

Yes, I find my ears whistle and buzz after iPod usage too. I have switched back to plane old headphones.

[redmaggie in reply to Chris21]

Tinnitus can be hard to live with, glad to hear that you are managing.

[redmaggie in reply to amc282]

Hi there, I am surprised that ENT didnt take you seriously since antimalarials including HCQ are well known for causing hearing problems in some unlucky people (as you and I have found out!) . Yes my T is worse with tiredness and stress too. goos luck to you.

[amc282 in reply to redmaggie]

Yes, I agree. He really just brushed me off.But, I am hoping it will settle. I find if I am stressed it gets louder. It becomes a mind over noise situation. a battle of sorts to get it to quiet. I hope you are improving. Take care x

[dg70]

Me too. Its so annoying but surprisingly cotton wool in my ears helps at night and I take gabapentin at night for pain and it knocks me out enough that the tinnitus doesn't keep me awake hardly at all.

[tjo52]

Sorry I can't help or offer advice however, I wanted to share. I have experienced pulsating tinitis for over four years was referred to an ent specialist after further investigation scan and ultrasound luckily everything appeared normal.I received tinitis counselling which didn't really offer anything new..

Via the Internet (which i generally wouldn't be interested in) found there was a connection for some between low B12 and tinitis..my blood results showed low b12 and was afvise to purchase a b12 supplement.. (i prefer the spray)I've been taking it now for 4 months with great effect on my tinitis which I now only experience occasionally might be worth a visit to your gp if you think it might be beneficial to you.

take care 🌻🌻

[amc282 in reply to tjo52]

Great suggestion! Thanks for that!

[redmaggie in reply to tjo52]

thanks, I will give it a try, nothing to lose!

[Gardenpots]

Hi I have tinnitus too, in both ears. As a direct result of my Hydroxychloroqine which I’ve been on for 12 years. My rheumatologist confirmed that this tablet was the cause. It doesn’t really bother me I’ve learnt to zone it out. I had a hearing test recently which shows I have mild hearing loss too. Not bad enough for hearing aids yet. Though the audiologist did say to let her know if there were any unusual changes to my hearing ie if one ear noise changes.

[redmaggie in reply to Gardenpots]

hi Gardenpots. its interesting to hear you have had that confirmed. My tinnitus has moved from bearable to very intrusive since HCQ, and I am concerned that it will just keep getting worse.

[Djlr in reply to Gardenpots]

The RESEARCH is scarce - they don’t do STUDIES on TINNITIS as they think not a BIG ISSUE -

But, when so many are listing it as a problem & SOME say worse when starting HYDROXYCHLOROQUINE - we should be made AWARE of the possibility. It helps knowing where SYMPTOMS “might” come from …since we get SO MANY areas of BODY affected by LUPUS 🥴😵‍💫💜😊

ARTICLE below mentions TINNITIS as a SIDE EFFECT:

lupus.net/complications-com...

But - I read it may be a LUPUS SYMPTOM too -

lupus.net/living/tinnitus

31% of Lupus Patients have Aural Symptoms:

pubmed.ncbi.nlm.nih.gov/962...

kaleidoscopefightinglupus.o...

[Krazykat26]

Yes from me too. I've been on hydroxy for seven years and I've been having problems since 2021. Squeaking noises n tapping noises..ears block n then I get pulsatile tinnitus in my right ear mostly. I've never had issues with my hearing before so am thinking it's a side effect that I'm affected by. I haven't investigated it yet but I have done extensive notes in my symptom diary regarding it 💜🌈 xx

[redmaggie in reply to Krazykat26]

thanks for your reply. its a good idea to keep a diary, it's the best way to keep track of weird symptoms. An investigation would be a good idea. I have had tinnitus for many years and although I am used to it to some extent, I would love silence sometimes, not the flipping squealing all the time!

[Djlr]

YES -

Many of us in the Lupus Group have noticed HEARING LOSS (not inherited - not in parents until late 80’s which would be normal)

Also - we all have Tinnitis - no one in my family has this in their 40-50’s.

ENT’s just blow us “off” because they can’t fix it.

Sad - I have noticed it’s worse on my BAD DAYS with Lupus (very loud).

So - could it also be part of our “LUPUS Flares” once the AREA has been WEAKENED by Hydroxychloroquine? or VULNERABLE because we have LUPUS?

Yet - EVERYONE who is able to use HYDROXYCHLOROQUINE - are all MUCH BETTER off than those who cannot use this mainly “noninvasive” , very simply older “Medicine” that has very FEW “MAJOR” side effects.

Could a DIFFERENT “SUPPLIER/MANUFACTURER” could make a DIFFERENCE?? May have to research & ask PHARMACISTS 🤔

Some Lupus Patients can ONLY take “PLACQUNIL” not GENERIC due to SENSITIVITY to INGREDIENTS making the DRUG. (I Know 2 People & it’s very SERIOUS Reactions for them. )

Others have EXPRESSED the Same Issue about TINNITIS:

healthunlocked.com/nras/pos...

[redmaggie in reply to Djlr]

Hi there, thanks for your reply. Tinnitus is quite common, so it can be hard to attribute it to any one cause. perhaps that's another reason for ENT's to brush it off. HCQ has been shown to be unpredictably ototoxic for some (a few?) people. It's so hard to unravel these things! the link that you sent was really helpful, btw.

[Jpmoore]

I’ve been on HCQ for @ 4 months now and it has not made a tangible difference to my long-standing tinnitus …but it does seem to have helped my neuropathy/lupus symptoms. But then everyone does seem to have their own individual reactions and symptoms don’t they?! Hope others can offer advice for you here…

[redmaggie in reply to Jpmoore]

Its good to hear that you have found benefit, good luck.