My rheumatologist told me to stop taking hydroxy for one month due to tinnitus. After a one month pause and lots of gingo biloba and bcomplex vitamins, i began with hydroxy again, but i still have this stupid ringing in my ears. My doctor doesn’t seem too concerned. He said that we will deal with this during my next checkup, which is 2 weeks away.
I was told here that tinnitus is usually caused by high doses of steroids. Im currently on 7.5 daily prednisolone, which is not high? I asked my doctor whether i should again stop taking hydroxy, but he is adamant that I continue. These are the two main drugs i’m currently on, the rest is all different kinds of vitamins.
Im not sure what to think. Is tinnitus dangerous? Can it cause me harm? It’s a sideffect of the drugs right? Im so sick and tired. Ive started to think that I might be paranoid. Last night it was so loud that it woke me up. Sleep is basically the only time i can somewhat forget.
Your opinions mean a lot to me.
Sorry for the long rant. I will shut up now
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Lili18
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It is a known, albeit rare, adverse effect of hydroxychloroquine. It isn't dangerous in itself but the long term effect of constant tinnitus can be very unpleasant and affect quality of life severely.
This may help if it isn't too complicated to read:
Yes - and you really need a hearing test to see what it is that is causing the tinnitus. I appreciate that having lupus means you need medication - but I'm far from sure your rheumy should be pushing the hydroxy at present until some investigations have been done about the tinnitus. Your doctor may not be concerned but the longer it is left the more likely it becomes that it will become permanent - it is quite possible he has not met it before as it is rare and also doesn't appreciate how trying it is. If the ear people think it is the drug then it should be changed if possible.
I did have a hearing test two months ago, my ear doctor said that i have not suffered hearing loss and prescribed gingo biloba and bcomplex until my next hearing test, around 20 Jan. I don’t know what to think anymore
What I gathered from the letter was that the tinnitus due to hydroxy was reversible but the hearing loss wasn't - which is good news. But if it were me I really would want it taken rather more seriously.
Do let us know how you get on - and I hope it all turns out OK. My husband has had both hearing loss and tinnitus since chemotherapy many years ago and I know the tinnitus drove him mad for a time. The hearing loss is more my problem in many ways...
I have never taken steroids, was only on Hydroxychloroquine for a very short spell at the start of my diagnosis , have been on methotrexate for several years and I have tinnitus. Don't believe it's particularly dangerous - just a darned nuisance. Over time I have got used to it & sometimes don't even notice it.
I get severe tinnitus. It started when I developed Lupus. I was then put on hydroxychlorquine a few months later. So with me, my cause of tinnitus is lupus causing inflammation to the auditory nerves.
While tinnitus is unpleasant, annoying and at times distressing, it in itself dangerous. However, there are certain things that need to be addressed.
Ongoing tinnitus needs to be investigated, especially if it is one sided as it can be a symptom of an acoustic neuroma. This is highly unlikely but a referral to ENT and an MRI will rule that out.
I had all of the above done and was told that my tinnitus was due to inflammation and a higher dose of steroids would help (and it does). I only get tinnitus when I am in a flare on on antibiotics.
I was referred by ENT to the local tinnitus councelling service, I didn't know what to expect but they were fantastic. They explained how tinnitus happened, helped me with relaxation techniques and gave me a special device to have in the house and under my pillow to help drown out the tinnitus. They were brilliant.
Tinnitus is often caused by Lupus but just because we have Lupus and are on meds with side effects doesn't mean that everything is caused by Lupus and the GP should be referring you to ENT to rule any mechanical problems out. If nothing is found then reassurance is a great thing.
So sorry Lili18, tinnitus is horrendous - someone wrote a day or two ago they had been given sound devices to reduce the effect ie if you have background noise (I find Radio 4 at low sound levels comforting just for muffled voices - each to his own!), the tinnitus seems less loud. Hoping you have some answers quickly xxx
Thanks for your explanation, happytulip. It actually does make things much clearer. I think i understand my doctor better now. Horrible stuff, I would rather endure tinnitus than have the steroids increased.
Hi eekt, thx for the suggestion. I will try radio. Was wondering where you have been. Hope everything is okay with you?
I got an acoustic neuroma which I was told could have been caused by hydroxy and so my advice would be to stop taking it all together , I'm not saying an acoustic neuroma is what you have got but I'm not the only person who has had this problem and so I would recommend an alternative Medication especially if you have any balance problems as well as tinnitus .
Well as long as you are getting it checked out I'm sure it won't be that but I just wanted to make you aware as I was talking to someone else once on this site who had just been told she had an acoustic neuroma and she was taking hydroxy .
I don't sorry but if you Google acoustic neuroma im sure there would be plenty of info although not sure if a link to hydroxy would be there , I was told by the surgeon who removed my tumour , he was very casual about it he said there could be a link and when I looked shocked he just said well there is nothing we could have done about it if you don't take your lupus medication you could die . There are alternatives though which he didn't mention , other doctors don't agree there is a link so I don't know . My tumour was small when it was discovered and they left it for a couple of years to see how fast it was growing with yearly MRI scans , I wasn't told about the medication link until the tumour needed surgery which annoys me now because I could have changed medication and for all I know the tumour might not have grown as much as it did if I had .
I have been playing the game of getting off steroids for over 5 years now. Every time I flare and my dose has to be increased to 15 or 20mg I get tinnitus. As soon as I drop below 10mg the tinnitus switches off again.
Im on 7.5 steroids. So i suppose it cant be from that. Now I’m just hoping it’s not some kind of a tumor. I hate the person that this disease is making me to be. Im sorry. Thank you for your reply
As we all know we are all a wee bit different. So I'm not sure if the point at which Pred switches tinnitus on will be the same for all of us that are going to get this side effect from Pred. I just remember when I suddenly developed tinnitus I checked the list of side effects for Pred and there it was. I then spoke to my Rheumatologist and he said "sorry yes that is one of the side effects".
Try to 'hush' those negative thoughts as best you can and speak to the specialists they will get to the bottom of it.
Well when I have read side effects it says ringing in the ears tinnitus is a common side effect isn't that the ear ? I am only saying what the doctor told me .
I don't have a PIL for Pred to hand, but I very clearly remember the Prof Rheumatologist telling me that "unfortunately it is one of the side effects ...".
Yes it's a shame isn't it that one of the long term side effects of steroids is osteoporosis. I am a food scientist so do my best to keep my calcium levels up. I also take calcium, vit D3 and exercise.
I too take Hydroxychloroquine, my tinnitus started after being on the drug for over 15 years, I too was advised to stop taking and see if things improved, they didn't and my lupus flared it's ugly head, I then commenced Hydroxy.
I know live with the tinnitus, its louder when I am tired and stressed out, but I do my best to ignore it. I find falling asleep with the tv on quite in the background helps (my husband then turns it off).
I am about to request hearing check as I feel I am starting to miss things, worse with low voices such as my husbands, so maybe not such a bad thing
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