Hydroxychloroquine and tinnitus

[spartacus101]

I been on leflunomide and hydroxychloroquine for about ten months and have suddenly developed tinnitus, and feel as if I have a small electrical substation between my ears. From internet research I see that hydroxychloroquine can cause tinnitus and the rheumy team have suggested stopping it for just two weeks to see if that makes a difference. I would be interested to hear (!) about other people's experiences to help me manage my expectations.

[welsh12]

I am on it and have developed tinnitus I reduced my dose with advice from rheumatology was on 400mg it has improved but I am not sure if it's the hydroxychloroquine as I had other side effects that have improved shakiness it does take a while to get out of your system I think 400 built up in my system I should have been on 300 for my weight I also take methotrexate. Tinnitus was really bad after a flight recently

[spartacus101 in reply to welsh12]

I am sorry that you also have tinnitus. There always seem to be some sort of side effects with the medications. Can you remember how long it took for you to notice some improvement on the lower dose at all? I will check that the dose is correct for my weight as I hadn't thought about that. Thanks.

[welsh12 in reply to spartacus101]

Hi around 3 weeks hope you get some improvement I also went to audiology to get my hearing checked and GP. I am monitoring things.

[spartacus101 in reply to welsh12]

I think I will get an audiology appointment as well.

[welsh12 in reply to spartacus101]

Yes lots of opticians do hearing checks free and will write to your gp check if wax causing issues too

[wishbone]

I had mild tinnitus before starting hydroxy. Little change for the first few years I was on hydroxy, that's until stopped taking it for a few weeks to see if it was the cause of stomach issues I was having. It didn't seem to be the culprit so I started taking it again but within a couple of days my tinnitus went crazy. Informed rheumy about it and was told not to take it anymore. The tinnitus eventually calmed down though not as mild as it was previously.

[spartacus101 in reply to wishbone]

Thanks, from what you say I think this is going to take longer than two weeks if my tinnitus is going to calm down or preferably disappear.

[janmary]

I started to have tinnitus after a few months on Hydroxy, combined with dreadful nightmares. I was taken off the medication- it wasn’t helping anyway- the other symptoms stopped but the tinnitus has never really gone away, though has improved. It’s more troublesome when I’m overtired or having a flare, so can’t be absolutely sure that the real culprit wasn’t the rheumatoid itself

[spartacus101 in reply to janmary]

It does seem to be difficult to identify the cause of tinnitus. At the moment I am so conscious of it and will have to develop some other distraction techniques rather than alternating beween the hairdryer and an electric toothbrush.

[welsh12 in reply to spartacus101]

Sticking ear plugs in sometimes directs me GP can offer a referral to a clinic who offers strategies

[nanny_bee71]

I had tinnitus before starting hydroxy which made it worse. Rheumy suggested stopping it as I also had a problem with my eyes. Tinnitus slightly improved after stopping but not gone completely.

[spartacus101 in reply to nanny_bee71]

I am sorry to hear that it didn't disappear completely for you. I think I am frustrated because the drug combination had brought down the inflammation and I had been feeling so much better than I had for months and then there is this.

[sylvi]

I have tinnitus caused by a drug, but it wasn't hydroxy. SO i can understand your worries. i am still suffering years later. Hugs. xxx

[spartacus101 in reply to sylvi]

I know from your posts that you have a lot going on at the moment so many thanks for the hugs.

[DaliLove]

That's interesting, I'm only on Leflunomide and have had problems with my right eye for a year. Maybe its the Leflunomide?

[spartacus101 in reply to DaliLove]

I think it is difficult to tell exactly what the cause might be, but whatever it is it is annoying.

[Mmrr]

I was on hydroxychloroquine years ago and developed reduced hearing. My rheumatologist changed me to at that time sulphasalazine.

[spartacus101 in reply to Mmrr]

It is really useful to find out about different experiences and I am adjusting my perspective accordingly!

[Cannyone]

Hello spartacus101

I am very sorry to read that you too now have to live with tinnitus. I hope that stopping it asap may work for you. I thought that, 3 years ago after only 2 weeks on hydroxychloroquine,when mine started.

Sadly, my experience is continuous,persistent ,bilateral tinnitus that no-one seems to think is anything to do with the hydroxychloroquine. ( I never went to all those rock concerts !) I am now on Benepali and in remission from rheumatoid joint pain but the constant tinnitus is impossible to ignore and, in my case,there has been no amelioration.

I did arrange for an eye exam before starting Hydroxychloroquine but had not picked up that it is also ototoxic. Too late now.

I really hope that your experience will not mirror mine.

PS. I did have an ENT referral - not very helpful I'm afraid. The specialist said to try the app for white noise or crashing waves etc. I tried the tapping technique ,also with no effect.

Latest research (article in New Scientist) is hopeful of a treatment with re-growing nerve fibres which may also be able to restore hearing loss.

[spartacus101 in reply to Cannyone]

Thank you for your reply. I would be really fed up if this turned out to be due to an afternoon of Bruce Springsteen in the late eighties. A rheumatology nurse mentioned that tinnitus can happen quite quickly after starting hydroxycholorquine but I got the impression that it was due to a longer term build up. I hoped that it would be like the methotrexate, where the unpredictable vommiting ceased pretty well as soon as I stopped taking it. I think I am going to have to buckle up....

[Cannyone in reply to spartacus101]

Yes…….but not too tightly !

PS : Methotrexate was horrendous for me too.

[Salamanca21]

Hi,

I have reduced my dosage of hydroxychloroquine and my tinnitus is slightly better at times if that helps

Good luck!

[spartacus101 in reply to Salamanca21]

It does - it gives me a glimmer of hope!

[LRC90]

I’m sorry this has happened to you too! Both Sulfasalazine and hydroxychloroquine greatly exacerbated my tinnitus (and vertigo!). Quite a few of the DMARD’s are ototoxic - and I guess we are the unlucky ones who actually do experience tinnitus as a side effect.

Upon cessation of both drugs, the tinnitus did settle and go back its ‘normal’ levels. It did take a few weeks though so don’t panic if it doesn’t calm down immediately.

[spartacus101 in reply to LRC90]

That's really helpful. I do feel as if I am in a huge game of pharmaceutical snakes and ladders because there always seem to be side effects.

[LRC90 in reply to spartacus101]

It’s awful isn’t it 😫 I do hope you find something that works for you soon, without the unbearable side effects. It did take a while for me. Good luck 🙏🏽