Hydroxychloroquine and tinnitus: Does anyone think, or... - NRAS

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Hydroxychloroquine and tinnitus

wishbone profile image
25 Replies

Does anyone think, or even better know, that hydroxy caused their tinnitus?

If so, how long after you started hydroxy did it begin, and did it stop or decrease after you stopped hydroxy, if indeed you did stop taking it??

I'm just fishing for a possible cause of my recent tinnitus but there are so many variants, some not med related of course, that it's not easy trying to nail it down.

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wishbone profile image
wishbone
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25 Replies
sylvi profile image
sylvi

I had tinnitus before i had hydroxy,we will see if my tinnitus eases now i am of them.xxxx

wishbone profile image
wishbone in reply to sylvi

Hope it does sylvi as tinnitus ain't much fun is it.

My tinnitus started a month or two after I stopped taking hydroxy so it's very unlikely to be the cause. That said, since stopping hydroxy my RA has been getting worse, so I've just started taking it again albeit on half my previous dose. The thing is, I'm now having second thoughts about going back on it as I'm concerned that it might make my tinnitus worse, which does seem to have improved a little over the past week.

Caza profile image
Caza

Mine started way before taking hydroxychoroquine

wishbone profile image
wishbone in reply to Caza

As did mine when taking mtx if I recall correctly, but it was intermittent and never bothered me as it was nowhere near as loud as it is now. After I stopped mtx it gradually decreased until almost non existant then returned with a vengeance a month or so back. :-(

Thanks Caza

edit...it returned two days after my flu jab, so that's my main suspect.

Caza profile image
Caza in reply to wishbone

I’ve only ever taken hydroxychoroquine. I’ve always put mine down to stress, the more stress I have the louder it gets. On the whole, now I know what it is ( I spent months trying to find out what was making the noise 🙄🤪) it doesn’t bother me too much but guessing I have it milder than most folk.

wishbone profile image
wishbone in reply to Caza

It's definitely stress related some of the time. Seems related to tiredness too, which is strange as I sometimes go to sleep with it low level and wake in the morning with it going full blast. The odd thing is I've had long periods of worse stress than now and never had a problem like this. Then again I think stress can be a funny old thing and mess around in the subconscious without you realising it. Well that's my theory what can happen anyway, though I'm not sure if Freud would have agreed with it. :-) Tinnitus is a strange ailment to be sure and I'm realistic enough to know that I'm extremely unlikely to get to the bottom of it, but feel I at least have to try.

Thanks Caza

Caza profile image
Caza in reply to wishbone

Definitely tiredness & yes I agree stress can take a long time to rear it’s ugly head & in all sorts of unpleasant ways.

I had it intermittently before hydroxy and haven’t had it since I stopped (for other reasons) but not a definite link, sorry wishbone not much help. It’s frustrating when yr taking different drugs trying to pin one down. Hope you get some respite soon, must drive you nuts x

wishbone profile image
wishbone in reply to

Sorry for the belated reply but I'm so damn slow typing!

Thanks Kerena,

You're not kidding it's frustrating and I'm waiting on an appointment with my rheumy and amongst other things will be asking about this tinnitus. You can see by my reply to sylvi, that it has eased of late, but it's sounds like steam escaping from a whistling pressure cooker this morning, which has prompted me to post.

in reply to wishbone

What a nightmare wishbone, hope they can sort it out for you x

wishbone profile image
wishbone in reply to

Thanks Kerena,

It can be really intrusive on times, as is now, but liveable with much of the time which has been the case for much of this past week. If it was going full steam ahead non-stop then I'd probably go bonkers!

janmary profile image
janmary

I developed tinnitus on Hydroxy associated with nightmares . Still got tinnitus though not nearly so bad as when i was taking hydroxy. nightmares stopped as soon as I stopped the hydroxy . Who knows what was cause and effect?

All sorts of things can cause tinnitus including age,

wishbone profile image
wishbone in reply to janmary

Thanks janmary,

Nightmares aside, I get my fare share of them with tramadol, that sounds similar to my experiences with mtx.

Sure, I know there's other things, including age, and I ain't no spring chicken that's for sure, plus my hearing is slightly impaired for my age. What I don't need to be doing is taking some med that can make my tinnitus worse, and it does say on the box that hydroxy can cause ringing in the ears. Obviously things need to be weighed up here such as...even if I could prove that a certain med is responsible for my tinnitus, will it be worth stopping it at the cost of making my RA worse?! I think probably not, but need to discuss this with my rheumy, which ain't going to be as easy as my regular rheumy retired in august and is yet to be replaced.

Gnarli profile image
Gnarli

My tinnitus pre-dates RD by a good few years so nothing to do with the hydroxy I only tolerated for a few days. At a hearing test on Monday it showed mild to moderate hearing loss but that the tinnitus was an issue. Really? You reckon?

wishbone profile image
wishbone in reply to Gnarli

Hiya J, you mentioned you were due an about an appointment when we spoke about our tinnitus a couple of weeks ago. Thought you said something about hoping for a new hearing aid to help with tinnitus if I remember right?

Speaking of appointments, my rheumy nurse just phoned with an a date...Nov 20th. It's with a stand-in rheumy I haven't seen before so not familiar with my case, and is 15 miles farther away than my regular hospital. No complaints though as they very quick with the appointment. I told the nurse that I'd just stopped the hydroxy because of the tinnitus only a couple of days after I restarted it!...she must think we've got a right one here! She might not be too far off the mark either! :-)

Deniseelk profile image
Deniseelk

Interesting, as I have wondered if I have tinnitus.... mines like a weird constant noise bit like being underwater ( not ringing) more like a rushing noise that makes me feel a bit headachy. I keep the TV on at home ( think its a subconscious way of blocking out the annoying noise). I have been on Hydroxychloroquine for 2yrs plus now ( but halved dose few months ago), took Methotrexate for 6 months but stopped due to side effects and now on Benepali for a year. I cannot remember exactly when the tinnitus started but could tie in with the Hydroxychloroquine!!! However, on reading Helix’s attachment last night relating to dental issues and RD.... I noted that a list of symptoms such as tinnitus, vertigo, headaches, ear pain, stuffiness, which are symptoms of TMD Temporomandibular dysfunction ( I have all of these and think I will raise it with my clinical nurse). Does this sounds familiar???

wishbone profile image
wishbone in reply to Deniseelk

Hello Denise, that's my wife's name by the way. :-) Remembering exactly when these things happen is a problem...wish I had a photographic memory on times. :-) Except for occasional stuffiness and a couple of root canal fillings I have none of the TMD related symptoms you mention. Interesting though and well worth asking your clinical nurse when you see her. Please let me know how you get on?

As I've previously mentioned the flu jab is my prime suspect as my tinnitus was almost non-existant prior to that then suddenly went haywire two days after the jab.

Thanks Denise

oKerrio profile image
oKerrio

I’ve had permanent tinnitus since I started Sulfasalazine and now 3 months down the line since stopping I still have it and am now deaf in my left ear due to an infection I picked up whilst on Sulfasalazine that would not clear up and eventually damaged my nerve that enabled me to hear in that ear! Hydrox just made me feel sick. Hope you get sorted.

wishbone profile image
wishbone

Sorry to hear that oKerrio, that's bad luck.

Did you have tinnitus in both ears, or to be more accurate..both sides of the brain? Mine is mostly in the left ear, which seems to be the ear most people have it worst in. No idea why though(?) I'm not very optimistic about getting it sorted but will have a good go. If my rheumy can't suggest trying something when I see her next tuesday, and it doesn't improve to a more comfortable level by then, as indeed it does on some days, then it's back to my GP, hopefully to be referred to an audiologist. I'm convinced methotrexate had something to do with starting my tinnitus when I was taking it many moons ago as it gradually decreased after I stopped taking it, though even at its peak back then it was never as bad as it is now and was easily ignored.

Thanks for reply

oKerrio profile image
oKerrio in reply to wishbone

It’s worth getting referred to a ent, I have seen 2 different ents one said nothing wrong didn’t bother doing a hearing test yet second one did a hearing test and pressure test straight away and said the previous ent should be reported as I have lost my hearing on the left side, he don’t know how he even missed it! Hope you get sorted.

Interesting as I have only just started with tinnitus but dare not mention it to my Healthcare team as they have enough to fix as it is. Sometimes it bothers me if it is bad but I try to work through it. I put everything down to RA. Some days the tinnitus drives me nuts but only for a short while

wishbone profile image
wishbone in reply to

Well done you! I suppose it depends how bad someones tinnitus is as to whether they feel the need to see their doctors or not. I had it for several years, albeit not severe, while on methotrexate and never bothered seeing anyone or posting here about it. Not that I need explain or justify myself to you or anyone else, but if you think tinnitus is the main reason why I'm seeing my rheumatologist then you are mistaken. You know little if anything about my medical history or what I've had to soldier on with, as you put it, presently or in the past. So perhaps best to keep your thoughts to yourself if you can't say anything constructive.

Pulfs profile image
Pulfs

I too suffer tinnitus some days are worse than others seems it's when I'm very tired. Can't really say if hydrochloquine caused it or not as it only started a couple of years ago. As been said could be stress related or the aging problem, tho I still think I'm 21 not 68 😂

wishbone profile image
wishbone in reply to Pulfs

Haha, that makes two of us...the only difference being that I still think I'm 20 not 67. :-)

Totally agree that it's worse when tired, and I have my share of those days, plus stress.

As previously mentioned, I don't expect to nail down the cause of my tinnitus to hydroxy or anything else. What I'm mostly concerned about is now that I have serious tinnitus is it wise to continue with hydroxy, plus I have other issues possibly related to hydroxy that I need to ask about.

I still think the flu jab is the prime suspect. I'm not saying it was the cause as I already had barely noticeable tinnitus, but I do think it's made it worse.

Thanks Pulfs

Pulfs profile image
Pulfs

Trying to find out if the flu jab for over 65 will react against the recent retuximab bio infusion that I've just had. Don't want to feel worse again 🙄

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