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    Lupus and Hearing Loss
    mountainmommom posted:
    Bad news from the audiologist this morning. In the last six months my hearing in my good ear (I'm deaf in the left) has gotten worse in 7 out of 9 frequencies. This is not the first loss in this ear. At this rate I'll be completly deaf in a few years. I see the rheumy next week and I'm wondering if he's going to change my meds (Imuran and Plaquenil). Do any of you have hearing loss from lupus? Has medication helped you? It seems my current meds aren't doing the job but I hate to go to something stronger. No one know for sure if the deafness in my left ear is from the lupus, but with the right ear going now, I need to get as much info as I can. Any information and personal experiences you can share are welcome. Thank you.
    lupylisa44 responded:
    HI Mountainmommom and Welcome!

    I haven;t heard much about hearing loss in lupus, so I looked it up. This is what I found on the subject. I hope it helps!

    Just out of curousity do you live in the mountains (as your screen name implies) If so, do you live in Colorado? I am asking because that is where I live. I am not in the mountains but live on the front range, just outside of Boulder.

    With love, with patience and with faith, we'll make our way.
    allie_bf responded:
    Hearing loss is more strongly associated with Sjogren's than with lupus or RA, but can happen. I recall that Plaquenil is associated with hearing loss so your doc has to consider whether it's (a) totally unrelated to either, (b) related to your lupus, (c) related to your medications, or (d) a combination of both. Because I have Sjogren's my rheumatologist thought it was more likely the disease than the medication, and kept me on Plaquenil, but others may have a different response. For most people, the current damage is permanent, and the goal is to prevent further loss. My audiologist told me that there are very few people who are able to aggressively manage the hearing loss with steriods, and (unfortunately) I was not in that group. If I were not doing so well on Plaquenil, I might consider giving it up, but right now I'm continuing with it, using my hearing aids, and keeping my fingers crossed.
    mountainmommom replied to lupylisa44's response:
    Lupylisa, thank you for your response. I just today got notice of your post. I appreciate the links you posted and find them very interesting. I live in the moutains of North Carolina, at 2800 feet elevation. I have found that when I go to lower elevations, like when we go to Florida in the winter, my symptoms often improve (non-hearing related, that is). I believe that higher elevations have a different kind of pressure that affects us lupies. What do you think?
    mountainmommom replied to allie_bf's response:
    Allie, thank you for your post. I just today got first notice of your and am sorry for the delay in responding. My audiologist says she sees hearing loss quite often in Sjogren's which I also have, but when I went to the renowned Sjogren's Syndrome Center in Philadelphia, Dr. Vivino and the audiologist there told me lupus causes much more hearing loss than lupus. And the Sjogren's Syndrome Handbook says it's uncommon for SS to cause hearing loss but it does happen. I guess it doesn't really matter which is doing it because the treatment is the same for both. The doctor put me on prednisone to cool things down and hopefully that will stop further damage. I believe your audiologist is right about the steroids, as there has been no change in my hearing, but hopefully it won't get worse. He does not believe Plaquenil is the problem either. Today I got two hearing aids, one for the hearing ear and a cross-aid for the deaf ear. Do you find that you get a lot of benefit from your aids? I have to decide within 30 days whether to keep mine.
    lupylisa44 replied to mountainmommom's response:
    The doctor doesn't know what is causing your hearing loss? That has to be pretty scary! My thoughts are with you!

    I know that pain meds like vicodin can cause hearing loss, but haven't heard of any lupus meds causing it. Has your rheumy ever spoken to you about trying CellCept? Not sure if it would work in your case, but it might be worth asking him about it.

    I lived at sea level most of my life (in Michigan) and since I moved to Colorado (we're at about 5200" where I am) I feel so much better! I don't think the altitude affects me at all, after I became aclimated, that is.

    It's the climate and barometric pressure that affects me most. Michgan is damp, cold and cloudy much of the year. Conversely, Colorado is very dry and has 310 sunny days/year.

    With love, with patience and with faith, we'll make our way.
    allie_bf replied to mountainmommom's response:
    I do benefit from the hearing aids, but it has been a struggle to get used to them being in my ears (i.e. they itch quite a bit at times,) and I've had to go back to the audiologist a few times to find smaller earpieces. Apparently, my ear canals are much more narrow than average so it's not an easy matter to find a good fit, even with the smallest size aids. I haven't noticed any progression in my hearing loss though, which is certainly a good thing, even though I have had multiple flares in the general lupus/SS otherwise. I'm still on the Plaquenil since neither the audiologist, nor the rheumatologist, are convinced it's the cause-and, as long as my eyes are fine, I expect to stay on that indefinitely.
    mountainmommom replied to lupylisa44's response:
    No, none of the several doctors I've been to can tell me what is the cause of the loss, but the rheumy and audiologist feel pretty certain it's autoimmune related. Right now the rheumy is trying to keep me at my usual dose of Imuran but will add another pill daily of the prednisone doesn't calm things down within a couple of weeks. I do believe, though, that Cellcept will be the next step after the Imuran. I don't know much about it and don't know how I would feel about going on it.

    I was so surprised to hear that Colorado is sunny so much of the time. I guess I was thinking that it would be gray in winter like some other places, but I guess not. How nice! And yes, dry weather is good! I'm glad you're doing well in your current location.
    mountainmommom replied to allie_bf's response:
    Yes, I remember trying an in-the-ear aid once and it did itch. Mine are behind the ear with just a very thin tube going into the canal and it's very comfortable. My canals are also very small and narrow, but I quickly forgot the aids were even there. That's a little scary because I'm so afraid of losing them...very expensive to replace and the insurance is expensive too if I go that route. The aids still need some fine tuning but it's good to know you have benefited. I know I'll need to be patient.

    I'm so glad to hear you have not suffered any additional loss. That's huge! And I, like you, also expect to be on Plaquenil indefinitely. My eye doctor just told me that "the powers that be" (whoever that is) have decided that a Plaquenil related eye exam is only necessary once a year. I had been going every six months for that annoying eye test. Once a year sounds good to me.
    mountainmommom replied to lupylisa44's response:
    Ooops. Forgot to check the alert box for responses. OK, done!
    LHAlvar responded:
    I know this string is a year old but I'm hoping you guys are still out there - So I have SLE was diagnosed 3 years ago. I'm on Plaquenil. I had the flu the first week of January and about a week into it my ear started aching really bad and I couldn't pop it, I went to the gp doctor he gave me prednisone and pain meds. The pain went away but my ear still feels like it's full of air? I have an appointment with the audiologist in the morning, but I'm wondering what your hearing loss felt like when it started? Like pressure? or was it something else?
    lisatru62 replied to LHAlvar's response:
    I've had SLE for about ten years and noticed a sensation of pressure in my ear about 4 or 5 years ago. I was diagnosed with a Vestibular Schwannoma in my left ear, the one with the pressure sensation about a year ago.

    When I get a cold my sinuses get stuffed up and this increases the feeling. It also makes it harder to hear. I have very good hearing right now but I've been told that if the Schwannoma grows it can lesser my ability to hear.

    They found this growth in my inner ear and it has to be checked annually. Just had an MRI and it hasn't grown since last year which is good. Every now and then I hear a clicking in my ear and there is some ringing also.

    Don't know if the growth is lupus related but it does affect my hearing when I get a cold.

    mountainmommom replied to LHAlvar's response:
    Hi LHASA, I'm still here. I know people without lupus who have the same ear trouble you describe. It sounds like it may more likely be related to the flu. My left ear deafness was sudden but to this day, I do get a feeling of fullness in that ear when my left side is hurting and inflamed. A cold and flu can cause those same feelings. Oddly, the loss in my right ear is very gradual and I don't get the feeling of fullness on that side. I wish you would go to an ear, nose and throat specialist. You shouldn't wait too long and an audiologist is limited in what he or she can do beyond telling you whether you've lost any hearing. You need to get to the root of the problem.
    dianalp responded:
    I know this is an old post, but for what its worth...
    Before they diagnosed me with mild lupus, I also had a brief hearing loss in one of my ears...They smacked me on steroids super fast...and I guess it helped. It happened again, but I said no to steroids, an it seemed to fix itself...I was sent for a CRP test, and it was noted I had semi high inflammation...I do have hypo thyroidism and was passing thru who knows. A year later and light symptoms, but 1:320 ANA and fine speckled and homogenous, and im a mild lupie ;( All other tests are negative except the ANA and CRP inflammation...I refused steroids again, but im on plaquinil...and ive asked to keep it low dose...see how it goes.
    ziggygal responded:
    hi it just recently happened to me...I'm acutely deaf in my right ear and yes I have Lupus. my Dr. put me on azithromycin and prednisone . I hope it works the "sea shell" noise is driving me nuts! best of luck to you too "F" Lupus stay strong

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