Hydroxychloroquine

[Fruitandnutcase]

I’m getting constant tinnitus, high pitched whistles, a tic, tic sensation as well as other strange noises, my hearing feels down too but worst of all is that I feel very dizzy and lightheaded. I’ve had a lot of headaches too and feel a bit sick but not all the time. The dizziness and tinnitus are there all the time, not just when I stand up, I feel dizzy when lying down. My blood pressure is in a good place so I don’t think that is the problem.

I never fall over and I can go about life fairly normally but I just feel lightheaded all the time.

I’ve looked up side effects of all the pills I take and hydroxychloroquine looks as if it could possibly be causing my problem. Unfortunately when I tried to book an appointment the first I could get with a doctor I know as opposed to taking pot luck with a locum which wasn’t good last time I did that was three weeks ahead so I’m stuck until the 18th.

Basically I’m wondering if anyone has had anything similar when taking hydroxychloroquine or whether my problems might be a left over from an awful bug I had from before Christmas to after New Year.

[Stayloose]

I've no idea about the drug but many people in our area have had a virus that has had the effects of fullness, deafness, tinnitus and dizziness. Worth checking with Gzp. I hope it melts away and doesn't require change of meds etc

[Fruitandnutcase in reply to Stayloose]

Thanks for hat. Sounds like it could well be the after effects of the Christmas bug then. I don’t want to have to give up on the hydroxychloroquine if I can avoid it.

[Mmrr]

Your symptoms sound very similar to my experience with HDQ, I also had an episode of going deaf for several hours after taking it. I was advised to stop taking HDQ immediately by my GP and contact rheumatology. They confirmed that I should not restart, I was changed to sulphasalazine.

You might be better contacting rheumatology now as the GP will most probably advise this anyway.

[Fruitandnutcase in reply to Mmrr]

Thank you for that, think I need to speak to someone about it. I’ve just remembered I saw a locum just before we went away in September because I was feeling dizzy back then - she was so totally uninterested that I vowed I would avoid locum doctors in future - so it may not be the Christmas virus. Back then I hadn’t thought that it could be a side effect of anything I was taking.

I haven’t taken my HDQ this morning - I read that it can take three months to leave your system so I figured a day or two off until I can speak to someone about it won’t cause too much harm especially as I was told my IA was in remission when I saw my rheumy in September.

[wishbone in reply to Fruitandnutcase]

I had very mild tinnitus before and during the 2+ years I was taking hydroxy. Stopped taking it for a couple of months due to suspected stomach issues, then 2 days after I restarted it my previously mild tinnitus went crazy. I stopped taking it straight away! My tinnitus did gradually ease after I come off hydroxy but has never returned to how it was.

That said, if you are also experiencing dizziness/ loss of balance then you need to see your GP as you may have Mennier's disease.

[Fruitandnutcase in reply to wishbone]

I just wish I could remember when the tinnitus started. I think it’s just gone haywire since the virus over Christmas. I’m wondering about labyrinthitis or vertigo or something like that. I know I’ve felt dizzy since about August. Honestly, this getting older is no fun!

[wishbone in reply to Fruitandnutcase]

Other than having tinnitus for many years, neither can I remember just when it started. I'm pretty sure I was on methotrexate at the time and may have been taking hydroxy as well, but there's no saying with certainty what activated it.

When I went to my GP he looked in my ears, asked if I had vertigo, gave me some drops for mennier's disease and asked me to go back if things did not improve. Things did not improve but I couldn't see any point in going back. I have both good and bad spells with my tinnitus but have learned to live with it....more or less.

Might be best to phone your rheumy helpline to ask about stopping hydroxy. My rheumy did not want me going back on it once she knew my tinnitus had got worse.

As for getting old!...some people seem to be ok with it but I'm not one of 'em!

Good luck

ediit...it was antihistamine tablets not drops the GP prescribed.

[JFlay]

I've had tinnitus for years before taking hydroxy and it hasn't got any worse, I haven't had dizziness though. Sorry that's not much help to you!

[Fruitandnutcase in reply to JFlay]

No, it is. I’m hoping mine is an after effect of the virus. It’s just annoying that I can’t remember if the tinnitus started before or after the hydroxychloroquine.

[JFlay in reply to Fruitandnutcase]

I'm more aware of mine at certain times e.g it's worse if I'm stressed and I really notice it, at other times it's just in the background. Probably a good idea to get it checked out. Hope you get it sorted.

[Brushwork]

Hi, yes I had both tinnitus and quite nasty headaches. Dizziness too actually, though that was mild.

[Fruitandnutcase in reply to Brushwork]

Are you still taking the hydroxychloroquine?

[Brushwork in reply to Fruitandnutcase]

No stopped two weeks ago, still getting occasional headache but not as bad. The headaches were like migraines as I also had visual disturbance. The biologic nurse advised stopping as I’m on Benepali now.

[Bon1]

Hi there

I hope you’re feeling a bit better and the dizziness has stopped. I just thought I’d share my experience. I had dizziness for weeks and then had sudden hearing loss.

This probably won’t happen to you and I don’t want to scare you!!! But just in case- do not be robbed off by a doc or think it can wait! You need high dose steroids and then it will almost certainly come back ( mine did but my vestibular system is wrecked)

Mine is part of my auto immune condition.

These symptoms are often viral and can last a long time.

All the best

Bon x

[Fruitandnutcase in reply to Bon1]

I went deaf in the ear that feels blocked several years ago. By the time I looked up Dr Google and realised I needed to do something I was outside the recommended time for being seen. I saw the doctor I saw counting on her fingers and said that I was outside the time. She referred me right away, I saw a specialist but had no treatment and the hearing came back.

I don’t feel so dizzy that I can’t stand up, and I don’t feel like I’m going to fall over. it’s just a strange feeling as if I’ve got to focus hard to stop moving.

I’ll brave the receptionist and hope I can get an appointment and at least speak to a doctor tomorrow.

I’ve got several autoimmune conditions- hopefully this isn’t another one. I was given a course of steroids for inflammatory arthritis before the hydroxychloroquine, they worked really well but raised my blood sugar levels to the extent that I developed steroid induced T2 diabetes so I want to avoid them if I can.

Thanks for your reply it helps.

PS - were you taking hydroxychloroquine and did you have to stop it? Did / do you have tinnitus? Although saying that I can’t imagine mine going away as I’ve had it for so long.

[Mumcon]

Hi

I was on hydroxychloroquine but had to come off it like you I had terrible headaches and felt sick

I was taking it for around 6 months but couldn’t suffer it any longer Hope you feel better soon

[nomoreheels]

Well, unfortunately you’ve possibly two causes so it may take a couple of things to determine what is causing these difficult symptoms. I know quinine can cause similar problems. What I'd do as you're not seeing a GP imminently is call your Rheumy helpline, see what the Nurse suggests. Personally I'd hope to be told to either halve my dose or halt the HCQ to see if that eases the symptoms. Could be that it's only related to the HCQ & will go altogether but that would mean a change in treatment of course, either way it's not something I’d consider acceptable to live with if there are options.

On the flip side it could be a remaining symptom of the virus you had. If that is the case only time will tell when it goes unfortunately, it could be vestibular neuronitis (inflammation of the vestibular nerve) or labyrinthitis (infection of the inner ear), both cause the symptoms you describe. The nausea a result of the dizziness could be eased with an antiemetic. What you need to know though is what's causing it so I hope you’re GP gets his otoscope out & has a good rootle around. 😕

[Fruitandnutcase in reply to nomoreheels]

Thank you nomoreheels, very good advice. I’m going to try for a same day appointment with my doctor tomorrow although I’m worried that I’ll not get a ‘good’ doctor at short notice.

When I went about feeling dizzy in August I got the impression that the locum doctor I saw wasn’t the least bit interested - I left feeling that she was just there for her daily rate which was a bit off putting especially as I’m definitely not what I’ve heard described as a ‘frequent flyer’.

I’ll try the doctor first then if I don’t have any luck I’ll try rheumatology- I’ve never been given a contact number for the rheumatology specialist nurse although I’m sure there must be one.

Thank you.

[nomoreheels in reply to Fruitandnutcase]

Just read your reply to Bon. It may be purely coincidental but my h is T2 diabetic brought on by acute pancreatitis & he has tinnitus & dizziness frequently. It's not been investigated yet as he's plenty of other probs which are but is a little concerned he could be heading the way of a possible Ménière's diagnosis. His Mum had it & so as it is something that can be hereditary it is at the back of his mind he may also. Anyway, just something to consider when you see a GP. Sorry. 😕

[Fruitandnutcase in reply to nomoreheels]

Your poor husband, I hope he gets sorted out soon and it’s not Ménières.

[Elizabethhampson]

Hi , I was put on Hydroxychloroquine and had to stop it fairly quickly as it made my tongue swell and split. I also lost all sensation of taste. I’m now on Methotrexate and Sulfalalazine thank goodness. The hospital was very quick to take me off.

[JoonPearl]

Hi there, I’ve had the same issue for 8 months now. Two hearing tests with both public and private ENT showed hearing loss in right ear. All day I hear my own heart beating, I can hear my own breathing, echos, constant roaring noise in my right ear and I feel like I have a bucket on my head when I’m talking. I have to put pressure on the side of my neck to stop it and get some relief. Sometimes my head feels like a battered football. I also have numbness in my right ear and some numbness on the right side of my face. The private ent I last saw a couple of weeks ago said I had ‘noisy blood’ on the right side of my neck and is writing a letter to my gp for further investigation. Previous public ENT insinuated I was crazy and to suck it up. I started hydroxychloroquine 10 days before the problem with my ear started. X

[Fruitandnutcase in reply to JoonPearl]

That sounds dreadful. Noisy blood sounds odd doesn’t it. Also sounds similar to what my podiatrist had. She (like me) had a terrible bug over Christmas and was left feeling a massive pulse in her head amongst other things. Can’t remember exactly what her doctor told her but basically if it was still there in a month to go back.

She was talking about it to a client who turned out to be a senior doctor in a big local hospital who told her to go to A&E - that was what it was there for. My podiatrist contacted her GP again and it was decided that she go to A&E. She has already had a head scan and is still being checked out.

If you have to put pressure on the side of your neck to stop something it sounds like you need to be thoroughly checked out. Have you spoken to your rheumatologist, it might be worth doing that too.

[JoonPearl in reply to Fruitandnutcase]

Thank you for your input, and for telling me about what happened with your podiatrist. I did say it to the rheumatologist but he didn’t say anything about it. I have been into my gp several times about it, begging for help. It took 5 months to see an ENT who gave me a nasal spray and told me to just deal with it. Paid £200.00 to see a private ENT recently (wish I’d done that sooner!). It is by far one of the most annoying health issues I’ve had. I’ve often felt like putting my head through a window, just out of sheer desperation. I do hope they eventually give me a scan of some sort before I lose my marbles!

[Fruitandnutcase in reply to JoonPearl]

Maybe you will need to wait until things feel really bad and turn up at A&E, you’ve tried your best so far to have something done without doing that.

I mean how can a doctor say or even feel ‘deal with it’. Seems to be happening more and more these days doesn’t it. Good luck trying to get it sorted out.

[alexask]

I hope you still have some left, because it is apparently one of the best treatments for Covid19 there is.