It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board

  • Could I have hearing loss from lupus?

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 04-11-2016, 07:34 AM   #1
    MaddyGL
    Junior Member
    (female)
     
    Join Date: Mar 2016
    Location: Syracuse, NY
    Posts: 13
    MaddyGL HB User
    Could I have hearing loss from lupus?

    In the spring of 2015, I noticed that there was a constant ringing in my right ear. Around June, I got in with an ENT, who referred me to an audiologist, who diagnosed me with hearing loss. Progressively, the hearing loss has gotten worse. I am a teen, so to me, this seems quite uncommon.

    In the fall of 2015, I noticed a constant ringing in my left ear, as well as my right. I checked with my audiologist, and I had a mild hearing loss in my left ear, and a moderate/major hearing loss in my right.

    I have also been having these dizzy spells that I like to call "flares", for the past year or so. During these "flares", I get extreme vertigo, fullness in my ear, and obnoxiously loud ringing in my ear. These attacks normally happen in only one ear at a time.

    On top of all of this, I have been dealing with joint pain, fatigue, and muscle pain. My memory has gotten awful, and I like I'm in a brain fog all the time. My mom has lupus, so we are thinking it could be autoimmune.

    My rhuematologist, ENT, and general doctor sent me for blood work, and my ANA was positive, along with my heat shock protein. This is all so confusing!

    Does anyone advice, suggestions, or personal experiences they'd like to share? I have no idea what to do! I am on 500 mg of naproxen and tumeric for my joint pain/inflammation, and a bunch of natural supplements in hopes of feeling a little bit better.

    Thank you so much for taking the time to read this!! PLEASE HELP!

    Last edited by mod85; 05-01-2016 at 09:33 PM.

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 04-12-2016, 03:28 PM   #2
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Could I have hearing loss from lupus?

    Maddy, hi & welcome. I'm sorry to read about your issues, not fun. (I had problems from early adolescence myself.) One of the best things you could do: visit your library for one or more of the popular lupus hardcovers. Then just browse the sections that seem pertinent. (You don't need to read every line.) Have you seen the "sticky posts"? Those are the permanent info posts located above the user threads. You'll find diagnostic criteria (both formal & so-called "alternative criteria"), also info on rashes, reading resources, etc.

    One lupus book I keep handy says that hearing involvement (or loss) in lupus is very rare. But the author adds that tinnitus (ringing) can occur due to the meds used by lupus patients (OTC NSAID's, hydroxychloroquine, etc.) He also mentions something rare (1 patient in 500) called autoimmune vestibulitis that CAN cause sudden hearing loss. Theoe patients are positive for 68-kd, an inner ear protein. Steroids reverse this deafness, so in your shoes, I'd certainly want to know if I'm positive for this 68-kd antibody!

    I get a lot of ear ringing & sinus congestion (and major pain) when weather fronts are approaching, due to low barometric pressure. (Many lupus patients are walking barometers.) Have you noticed any weather pattern to your ear ringing?

    What is "heat shock protein"?

    In addition to positive ANA, do you know if other tests were out-of-range? (ANA alone is never diagnostic of lupus, or of any other condition, for that matter.) If this IS lupus, perhaps Naproxen isn't enough to control your symptoms... I've taken the mildest tier of prescription lupus meds, an antimalarial, for many years, that hydroxychloroquine I mentioned above (the brand name is Plaquenil). But people in severe flares &/or with major organ involvement (ike kidney, brain, heart, lungs, etc.) require stronger meds in addition: steroids are the 2nd tier, and immunosuppressants are the 3rd.

    People with lupus, and those on the path toward it, often have deficiencies in key vitamins, like B-12, D, and Folate. You should have those levels tested, too. Also, people with lupus can be extremely photosensitive to UV rays: sun & tanning beds can trigger not only rashes but full-blown flares. So you should definitely ask about sun avoidance/protection. Anyhow... I hope this helps some. We'll look forward to hearing more. Sending hugs & hopes that you get clear & helpful input from your rheum. Bye for now, Vee

     
    Reply With Quote
    The Following User Says Thank You to VeeJ For This Useful Post:
    tiggertoo2174 (05-31-2016)
    Old 04-26-2016, 06:50 PM   #3
    MaddyGL
    Junior Member
    (female)
     
    Join Date: Mar 2016
    Location: Syracuse, NY
    Posts: 13
    MaddyGL HB User
    Re: Could I have hearing loss from lupus?

    Thank you for your reply! I will definitely go to my library and look for some more info. I never thought of doing that before!

    I have ringing all the time- it never really goes away. I did however notice that when I'm in a sudden change of elevation, (up and down elevators), or if the weather suddenly changes, that the ringing is more loud and obnoxious.

    Heat shock protein is a group of proteins produced by cells due to stressful situations on the body. The blood test is also known as "HSP". Surprisingly, none of my other tests are positive! I'm now off of the naproxen (500 mg), and am now taking Meloxicam. Its working better, but isn't really doing much otherwise. My mom thinks I should be on a three month trial of plaquenil, only because it is low risk, and it's helped her lupus so much, but my rheumatologist isn't going for it.

    I did notice however that I have an odd rash on my arm. My mom looked at it, and says she thinks that there are discoid plaques on it. My mom's lupus turned from discoid to SLE. Have you had any experience with this before?

    Thanks for all of the info!!
    ~Maddy~

     
    Reply With Quote
    Old 04-27-2016, 04:49 AM   #4
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Could I have hearing loss from lupus?

    Maddy, yes, I had recurrent rashes for 8+ years, mostly upper arms & back, some on upper thighs. Mine wasn't discoid (the scarring and/or depigmenting kind). Turned out to be Subacute Cutaneous Lupus Erythematosus (SCLE), the annular (targetlike) form. FYI, there's a second kind of SCLE that looks quite different, very much like psoriasis: it's called SCLE papulosquamous or psoriasiaform. Both SCLE's are tend to be extremely photosensitive, and many patients with these rashes test positive for anti-Ro (I did).

    My problem was, my local doctors hadn't seen the SCLE's, they seemed to only know discoid & malar... I finally took myself to a large teaching hospital, where I got answers PDQ. There I was evaluated and tested by both a rheumatologist and a dermatopathologist. (That's a doctor who is both a dermatologist and a pathologist, thus he did the skin biopsy labwork himself.) Interestingly, both specialists knew what my lesions likely were immediately.

    If specialized skin tests were to prove your rash is lupus-specific, that would prove you have lupus, making you clearly "eligible" for Plaquenil.

    In one of the sticky posts (permanent info posts), you may read the names & descriptions of various lupus rashes. (The "stickies" are located just above the user threads.) You'll also see reading resources.

    Let us know what happens, OK? Good luck & best wishes.

     
    Reply With Quote
    Old 05-01-2016, 04:18 PM   #5
    MaddyGL
    Junior Member
    (female)
     
    Join Date: Mar 2016
    Location: Syracuse, NY
    Posts: 13
    MaddyGL HB User
    Re: Could I have hearing loss from lupus?

    Thank you so much for the information!! I will look into this and ask my rheumatologist about it.
    I will let you know what happens!

     
    Reply With Quote
    Old 05-01-2016, 06:18 PM   #6
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Could I have hearing loss from lupus?

    Maddy, you are welcome. I cannot recommend visiting your library more strongly! Laughably, one sentence in one of the best-known hardcovers made everything fall into place in my tiny & unschooled mind, so I immediately booked an appointment with a teaching hospital rheum. Hilariously, given my years of waiting, I got dxed in less than a month, which is really silly considering that 35+ years had elapsed since my flaring symptoms began, and 8 years had lapsed since my rashes first emerged.

    But here's the good news about reading library books: you don't have to read every page. Read selectively: peruse chapter titles at the front & the index at the back, then read only those sections that fit you (so far).

    Because I read in advance of switching to a new rheumatologist, I discovered another unexpected benefit of reading: my new rheum sounded as though he could have written the hardcovers I'd perused. So I knew immediately that I'd chosen wisely, finally. Reading helps you assess your doctor, is what I mean.

    Good luck & keep us posted, OK? We're rooting for you. Night-night, Vee

     
    Reply With Quote
    Reply Reply

    Tags
    fatigue, hearing loss, joint pain, lupus, vertigo



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 10:01 PM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!