Author Topic: Plaquenil affecting my ears and balance?  (Read 1341 times)

Deb 27

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Plaquenil affecting my ears and balance?
« on: March 05, 2021, 01:04:51 PM »
So, I've had some dizziness and off balance feeling with headaches. I've read that plaque nil can be toxic to the ears. Has anyone had this side effect??

I quit taking it for about a week and felt better. took one today at lunch and having balance problems now and dizziness....... Grrrr......... Not sure it was helping me a ton anyway, maybe a little.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Robi5

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Re: Plaquenil affecting my ears and balance?
« Reply #1 on: March 05, 2021, 06:29:43 PM »
Hi Deb.

So I?ve developed tinnitus since 6 weeks ago along with a feeling like I have cotton stuffed in my ears, and about 5 weeks ago my Rheumy stopped my hydroxy because he was afraid it was the culprit and didn?t want to risk permanent damage, and put me on 6 weeks of prednisone to cover for it.  Prednisone can bring down inflammation all over, including the inner ear.  So I don?t know if that is what made my ear not feel blocked anymore.  I had an ENT appointment today and they said my hearing was fine, and there is no hearing damage.

So yes, its definitely a possibility.  I would suggest you get an appointment as soon as you can, and see if you can get an ENT if it doesn?t resolve. 

My doctor doesn?t want me to go back on hydroxy, but the other drugs are so much worse.  I really hope it wasn?t the cause for me, because it worked super well for me. 

Hearing issues are scary, and although mine didn?t effect my balance, it something you don?t want to chance.

meirish

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Re: Plaquenil affecting my ears and balance?
« Reply #2 on: March 05, 2021, 07:36:15 PM »
I agree with you that this issue could be caused by plaquenil as any drug can cause problems of any kind. It is good to see ENT and get this issue addressed to see if hearing damage.

I do want to mention that with Sjogrens one of the first symptoms that can show up is neurological issues. I had this happen to me and it was very frustrating. I had hearing loss in one ear that ended up being total except for "garbage".  I have had inflammation and infection in this ear many times and ended with a tube placed about 4-5 times.

My first symptom that showed up was balance.  I found myself staggering when I walked and had problems losing some balance at times. The thing that took me a long time to describe was proprioceptive disordor or lighting.

I would shut off my car and with no lights inside the car could not find my door latch. Took me a long time to get this. This is a neurological problem that results in us being able to identify where our body is in relation to our surroundings. How many tasks do we do by virtue of our brain learning and remembering to find things automatically without seeing anything. Finding light switches in a dark hall that we have done over and over many years comes naturally.

When, all of a sudden, we lose the ability to complete a task that is second nature there is reason to consider just what is going on. I became unable to walk down a dark hall  that was no poblem before.  I could put one hand out to check the wall in relation to where I was, etc. It turned out that I could not even find the wall with my hand or know where to put my feet in relation to the floor.

I found that I was having trouble walking and stumbling and always had to make sure I checked my surroundings and looked to see where the steps were and where to put my feet. Getting out of the car and walking into my workplace meant that I had to make sure I could see where the ground was when I got out of the car. When it was light and bright out these tasks were easier, but I had to always keep this in the back of my mind and still do much of the time. Ataxia is one word that is part of the vocabulary describing issues with balance, etc.

This has been an issue for me since 1997 and I did not get diagnosed with Sjogrens until 2003. I was diagnosed with Autoimmune Hearing Loss in 2016 by my immunologist. When I first had the hearing loss my ENT offered me 100 mgm. I turned this down as oral high dose steroid are hard on my mental status. They did not have any testing available til a few years prior to my AIHL diagnosis. At this time I had steroids IV 500 mgm 1x month for 5 months with no improvement and I am currently losing the hearing in my other ear and wear 2 hearing aids. One hearing aid in ear losing hearing and a hearing aid in the deaf ear that is wireless and directs sound from my non hearing side to my good ear hearing aid. This is really great cause it is crazy how much you dont hear when one ear is deaf.

Sooo, my concern is that a drug could sometimes be blamed for an unidentified neurological problem. My ENT also has a specialty in base of the brain surgery and is very smart about our hearing in relation to the neurological issues. I am lucky to have him all these years. Hope this info has been of use. There are so many problems that occur with Sjogrens and it is taking years for them to be identified. meirish

I had questioned my doctors about these issues relating to hypothyroidism. I had been doing research and felt that this might be related as I was diagnosed with hypothyroidism a year earlier. This was something that had been missed for several years and it took a move out of state and a new doc and was later diagnosed with Hashimotos.      Also I have a hard time on the computer screen many times as can't get the words and space to work together. It is very frustrating.
« Last Edit: March 05, 2021, 07:44:59 PM by meirish »

Scottietottie

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Re: Plaquenil affecting my ears and balance?
« Reply #3 on: March 09, 2021, 04:31:17 PM »
Hi  :)

I was on Plaquenil for 6 years but had to come off it because it caused tinnitus. I still have tinnitus but it’s not as bad as it was. Plaquenil can always be resumed if it is not causing symptoms.

Take care - Scottie  :)
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Never do tomorrow what you can put off till the day after tomorrow!

Robi5

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Re: Plaquenil affecting my ears and balance?
« Reply #4 on: March 10, 2021, 12:52:09 PM »
Hi  :)

I was on Plaquenil for 6 years but had to come off it because it caused tinnitus. I still have tinnitus but it’s not as bad as it was. Plaquenil can always be resumed if it is not causing symptoms.

Take care - Scottie  :)

Hi Scottie,

Are you on any medication since stopping Plaquenil?   I assume you get the arthritis that is so common to us, and needs to be controlled so it doesn?t cause us damage long term.  My tinnitus hasn?t stopped since 7 weeks.  It is getting a bit quieter though and more tolerable.

My doctor has suggested Azathioprine, but I?m scared of the side effects.  Seems like Plaquenil is the least worst of our meds.

Robi5

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Re: Plaquenil affecting my ears and balance?
« Reply #5 on: March 10, 2021, 12:55:35 PM »
@meirish

So sorry to hear about what you?re going through.  The condition you have when its dark sounds really challenging.  You sound like such a strong person to go through all these things and keep on trucking.  I?m trying to develop that kind of attitude.  Its tough, and sometimes you feel like giving up when its at its worst.  But then the sun shines again and you feel life is such a blessing and a gift, and we should just try to enjoy what we have.  Thanks for sharing your experiences with us!

meirish

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Re: Plaquenil affecting my ears and balance?
« Reply #6 on: March 10, 2021, 11:38:27 PM »
Robi5, Thanks for your kind remarks. I am not really that strong. There are so many times that I think I am really quite stupid to not get terribly bummed out. I just seem to go from one problem to another and have managed to hang in there for some reason.

I have to admit that this last year has been really challenging for me health wise and then add the covid in there. I just had my catarract surgeries for both eyes and I was so bummed out with that surgery. Wasn't painful but trying to avoid bending over just about killed me. I had to carry my pickup stick with me to ppla ahead for picking things up off the floor. I have neuropathy in my hands and drop a whole lot of stuff. It is second nature to bend over and pick things up and it was a tough few weeks.

In two weeks I have a toe amputated that I injured and will have to spend a couple of weeks sitting down much of the time. UP to the bathroom and fix a bite to eat is what the doc said.....Then when I get recovered part way from that surgery I have to have my fourth carpal tunnel surgery... MY doc said that will be a breeze and he is right. We'll see how tough I am when these few months are over with. :D

Like you say...there does come a good day eventually. Good luck all. meirish

Deb 27

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Re: Plaquenil affecting my ears and balance?
« Reply #7 on: March 13, 2021, 06:44:08 AM »
Good luck with everything meirish!!!!
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Scottietottie

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Re: Plaquenil affecting my ears and balance?
« Reply #8 on: March 16, 2021, 04:25:15 PM »
Hi Robi  :)

I didn't substitute anything for Plaquenil.  I take thyroxine for my thyroid and Paracetamol for pain - also amitriptyline at night.

I've got to the age that I don't know what's SjS and what is just ageing!

Take care - scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

meirish

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Re: Plaquenil affecting my ears and balance?
« Reply #9 on: March 16, 2021, 06:08:52 PM »
Scottie, You are so right about what is aging and what is Sjogrens. I also have days when I really don't care as my "get up and go has got up and left". I have gotten to the age where I really can identify with that old saying. Take care Scottie. meirish