High pitched whistling noise could it be a side affect of hydroxychloroquine?

[JulesCurrie]

Just wondered if anyone has experienced constant high pitched whistling in their ears. Did read it was possibly a side affect somewhere. It’s so annoying ..

[Summerrain14]

It can cause tinnitus which is that whistling sound in your ears. Many of the RD meds seem to have this as a side effect. I notice the tinnitus more when I have no background noise like when I am trying to sleep. I have strangely got very use to it. 😊

[JulesCurrie in reply to Summerrain14]

Thank you yes I too notice more when there isn’t any background noice and when trying to sleep. Can’t say I will get used to it though...

[springcross]

I've had tinnitus in my left ear for years (it's like a white noise). I am not on Hydroxy I have MTX but I have to say that since using it, my tinnitus has been a lot worse and can sometimes resemble high pitched whistling and sometimes seems to stretch across my head too - drives me nuts.

[wishbone in reply to springcross]

I had mild tinnitus for many years. Not sure what brought it on but could have been either methotrexate or hydroxy. Back a year or so I stopped taking hydroxy to see if it was causing stomach issues I was having. After a couple of months I decided to start taking it again as my RA was getting worse. Two days later my tinnitus went nuts so I had to come off it permanently and the tinnitus gradually eased over the following weeks, but has never returned to its former mild state and does trouble me from time to time. Odd how my tinnitus was mild for the years I was on hydroxy yet only got really bad after I stopped and restarted it.

[springcross in reply to wishbone]

Thanks for that wishbone, very interesting. x

[JulesCurrie in reply to wishbone]

Thank you for info interesting ..

[JulesCurrie in reply to springcross]

Mine is on both ears so irritating . I have MTX and hydrroxy . Specialist has suggested to stop taking hydroxy been on it for 18 years with MTX too . Thought it was a combination drug so wonder what affect it will have not taking both?

[springcross in reply to JulesCurrie]

I'd be interested to see how you got on Jules.

[Mmrr]

Hydroxychloroquine caused a temporary deafness in me, it resolved within a few days of stopping. I was advised to start again, and experienced not quite ringing, but buzzing, quite unpleasant. I decided to stop taking it.

[janmary]

I developed tinnitus when on Hydroxy - got better when I stopped the drug but has never really gone away and gets worse when joints are inflamed and at night

[JulesCurrie in reply to janmary]

Thanks January. When you stopped hydroxy did they put you on something else because thought it worked as combination drug with MTX

[janmary in reply to JulesCurrie]

I'm a reluctant prescribee! - have been on just M/X for years - with very occasional (less than one a year) depot pred injections.

[ABwn]

I have experienced it occasionally and as a previous respondent said usually when it's quiet.

[6metal6head6]

Hi, I am on MTX and Sulfasalazine and I have had seriously bad tinnitus continuously for over 2 years now, a high pitch noise absolutely screams through my head and nothing has helped to stop it. I have even purchased a wind up radio to try to block out the noise when I try to sleep but to no avail. Really driving me round the bend at times.

[Brushwork]

Yes my tinnitus began when I was taking Hydroxychloroquine. It never went away, but sometimes it eases off

[nomoreheels]

It wasn’t something that bothered me when on HCQ but any of the meds with quinine can cause this annoying side effect, usually goes when the med is stopped. Should that be the case there are at least a couple of other DMARDs which your Rheumy may suggest, thinking of sulfasalazine & leflunomide particularly. Both HCQ & MTX can be taken independently, they aren't combination meds but are often the first double therapy to be prescribed. I started on HCQ the first year of diagnosis & MTX was added when it became less helpful. Since then I’ve had double therapy with MTX/SSZ & MTX/LEF but currently the only DMARD I'm on is MTX.

Do report your tinnitus to your Rheumy team, they should be made aware & hopefully will be able to advise you.

[JulesCurrie in reply to nomoreheels]

Yes said to stop hydroxy ..

[HevP]

I found my Tinnitus increased when I started, but I learnt to live with it. I find myself listen to it when trying to sleep, it my way of mindfulness 🤔and now relaxing.

[JulesCurrie in reply to HevP]

Interesting thought thank you

[Melarky]

Yep both ears hydroxy and mtx treatment. Sometimes it’s like a throbbing noise in my head too hard to describe but annoying!! No suggestions to resolve sadly but nice to know not alone! Take care x

[JulesCurrie in reply to Melarky]

Yes thank you for your reply x

[Anniebl24]

Yes got really bad with Sulfasalazine added to the mix, even had vertigo too.

Worth talking to the rheumatologist about.

[Hidden]

I started MTX and HCQ 14 months ago. After 3 months Sulfasalazine was added and only 5 weeks after that I got tinnitus. I stopped the SSZ, hoping the tinnitus would go away. As it didn't, I stopped the HCQ too, (both times after discussion with the consultant). Fortunately my RA has been well controlled by MTX alone. However, 9 months after complete cessation of SSZ and HCQ, I still have tinnitus.

The consultant would not admit one (or more) of the drugs was likely to have caused it, despite warnings in the Patient Information Leaflets. She has no alternative explanation.

My GP referred me to audiology - a grand title for people who can do absolutely nothing for you. You could learn their script in seconds. It goes, "You've got tinnitus. There is no cure. You can try this device (like a hearing aid) that plays a noise into your ear. Some people think it helps." It does nothing fro me!

Apparently tinnitus just stops for some sufferers - and sometimes restarts too. Some people have it permanently. Myself, I get a very occasional short period (from 1 to 3 days) without it, but it returns.

I hope you are one of the lucky ones who get rid of it permanently.

[Gracie2019]

Yes, and because of that side effect, my rheumy took me off it. She knew in rare cases it could become permanent tinnitus/hearing loss. (It was so bad it kept me awake at night).

Once I came off it, the high pitched noise in my hearing resolved within a couple of weeks.

[Otto11]

Hi I have tinnitus in my right ears for many years it dosnt seem to alter no matter what meds I am on tbh. I dont know when exactly it started but I was on Hydroxychloroquine 20 years ago then again 4 years ago. either way its never gone away or changed. Ive never thought to mention it to Rheumatology but have been seen for other ear problems several times in ENT. It awful but as others say you sort of get used to it but at night when all is quiet is by far the worst.

[oznaf]

Thanks everyone for the feedback..I have it in my left ear after I came out of surgery last week for a wrist fusion. I have been taking Percocet Oxy. Hopefully when I get off these meds it will go away because I had never happen this effect before after surgery.