Tinnitus and SLE, Plaquenil?: Hi - i have been on... - LUPUS UK

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Tinnitus and SLE, Plaquenil?

lawrencepark profile image
7 Replies

Hi - i have been on Plaquenil for 28 yrs with mild SLE. Recently dropped my dosage in half, and ended up with tinitus in one ear...anyone got any thoughts/advice? thanks

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lawrencepark profile image
lawrencepark
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7 Replies
Freckle1000 profile image
Freckle1000

Just make sure you're Doctors balance the dose so you're SLE is under utterly control as well as keeping the medications to a minimum - to keep you're immune system strong enough. Were all different - but my SLE can attack any bit of me - SLE 'undefined' I think they call it. Perhaps you need to up you're dose just in case the lupus is messing with you're ear ??? It would definitely be worth getting to you're specialist just to ask the question ??

cpops profile image
cpops

Hmm thar sounds odd as I would expect the opposite. That is, for tinnitus to occur with a higher dose. May be totally unrelated. Ask your doctor or contact the company who makes it for advice.

copdber profile image
copdber

I’m on 200mg morning and evening for the past 12 years. I’m doing well so I won’t be cutting back on it

chaimee profile image
chaimee

I was told the medication takes at least 6 weeks before it kicks in . Not sure about it causing tinnitus.

Djlr profile image
Djlr in reply tochaimee

I've always been told 4 to 6 months – but everyone responds a little differently and possibly quicker. It took me every bit of the fourth month before I felt it in six months before the "constant pain" went away.

Now it comes and goes, and I treated accordingly with muscle relaxers, Tramadol only if needed.

Resting, resting, resting is usually the best medicine for me. It's my body telling me to "slow down like when we have the flu" it is trying to recuperate Dash so resting allows your body to recuperate and the pain will subside "unless it is going to far" and it starts attacking more organs .

I've seen this happened to several of my friends, I've seen them so tired I can barely move and they try to keep going. It makes me sad, because they end up with heart attacks, strokes, other interesting diseases that get attached onto their Lupus - because we become weak.

Our strength can be found by resting – less stress, prayer, meditation, taking our medications regularly, seeing the doctor as required by him or her, seeing the eye doctor for the Hydroxychloroquine toxicity, talking with other Lupus people like we are doing here and sharing. We learned so much from each other – it is a blessing 💜

Yes I have tinnitus, hydroxychloroquine also causes hearing loss – it is coming about in many of my Lupus friends – it is not hereditary hearing loss. It is one of the prices we pay, it is good to see an auditory doctor once a year to keep them in the loop.

I find that when The lupus is more flared in my body is when the tinnitus is more prevalent. At times I don't hear it or I'm not aware of it, we need to be rementioning this more to our rheumatologist. They are not so quick to put 2 + 2 together with hydroxychloroquine and tinnitus – hearing loss to follow.

lawrencepark profile image
lawrencepark

think you are correct that not many patients mention this to their dr

Djlr profile image
Djlr in reply tolawrencepark

Yes - there are so many things we forget to bring up, with tinnitus being just one of the few....I have heard lupus patients says, “Well, They just looked at my finger joints and knees, ankles, toes ....asked ‘how are you , but never asking about specific areas to make sure I was not experiencing pain or problems in other areas of my body’ “. So if we do not research what areas of the body are affected by Lupus- which can be any area – then they are not going to ask us.

We have to go and “totally prepared” with everything written down -anything we have experienced throughout the month including tinnitus… And ask them what they think.

But, if we are having problems with tinnitus we definitely should see an ENT just to get a baseline for hearing🤔.

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