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Thread: Newbie here.. Do any of you have Menieres along with your Lupus?

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    Default Newbie here.. Do any of you have Menieres along with your Lupus?

    Hi all,
    I am new to this site but not new to Lupus. I have been in remission for years.. I was dx'd in 05 with Tumid Lupus. No one knows anything about Tumid Lupus. Dr's... others with Lupus .. no one.. lol.. IF you know something about it.. please fill me in as its only supposed to affect my skin.
    lol.. yeah right. It affected me with brain fog, joint pain, light sensitivtity, etc...
    Well anyways back to why I am here. Like I said I have been in remission since... hmm.. 2007 with no symptoms what so ever. Lately I have been having some joint pain but nothing horrible. So I just figure its the cold weather here that we never have..
    Well then I started getting dizzy and dizzy and dizzy again. It didnt take long at all to get dx'd with Menieres but I heard it can go with Lupus?
    So does anyone out there have Menieres along with their Lupus and how and what are you doing to minimize it? Did it take long to get dx'd with both? The only symptom I have of Lupus is the joint pain. That started a month ago.
    Any responses are so greatly appreciated.
    Thank you all so much! I hope and wish all of you pain free days!
    dee

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    HI anndee! Welcome to WHL! From what I understand Tumid Lupus is a subset of Discoid Lupus or SCLE which is a sub acute cutaneous lupus. According to the ones in the know (those wonderful doctors who tell us we are not sick when we are) The difference between Tumid and Discoid/SCLE is simply the type and location of the rash. Usually the rashes found in Tumit Lupus are only on sun exposed areas. This is an autoimmune disorder it is not as dangerous as other forms of Lupus (if that is the only thing one has).

    Menieres is also an auto immune disease (at least in many cases). There are more than 67 (I think that is the correct number) AI diseases and the symptoms do overlap so much that often times even doctors are not sure where one disease ends and the next one begins. Many, maybe even most, of us have multiple diagnosis. I don't personally have Menieres but I am sure someone will be along shortly that has.

    Once again, welcome to WHL we are so glad to have you here!!
    Mari

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    hmm.. How interesting about the Tumid.. Because where I get my rash is on my hip where if at all does it ever see the sun.. lol Thank you so much for your reply.. I hope to hear from many others.. I am looking to see how I want to proceed with everything when it comes to the dr's.

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    Quote Originally Posted by anndee1971 View Post
    hmm.. How interesting about the Tumid.. Because where I get my rash is on my hip where if at all does it ever see the sun.. lol Thank you so much for your reply.. I hope to hear from many others.. I am looking to see how I want to proceed with everything when it comes to the dr's.
    I say give ALL the info to the doctor. I was diagnosed with SCLE lupus first and, like you, I had way too many symptoms to be just that. I firmly believe diathat doctors that don't really understand how to diagnose Lupus will fall back on one of the "skin" lupus things. Stand up for yourself! You must be your own best advocate!
    Mari

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    Hello Anndee,

    Welcome to WHL. You are going to want to talk to Magistramarla. She's a long time member here and she has both SLE and Menieres. I'll send her a message and let her know that you have some questions and are looking for some advice.

    Rob

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    Hello Anndee,

    Welcome to the WHL and nice to have you with us, i've added some info below about Tumid Lupus to help you.

    Terri x

    Lupus is a common type of autoimmune disorder that can cause painful inflammation in various parts of the body. A rare subtype of the disorder, tumid lupus, primarily affects the outer and inner layers of skin. Dry, non-itchy rashes can develop anywhere on the body during a flare of tumid lupus, but skin problems are usually isolated to the scalp, face, neck, or chest. Most cases are relatively mild and only cause outbreaks a few times a year, though some people experience chronic rashes and other related symptoms. The condition can usually be controlled by taking precautions against known triggers and using topical anti-inflammatory creams during active episodes.

    Doctors are unsure what causes tumid lupus to develop, but the disorder is likely due to both genetic and environmental factors. Most people who develop symptoms have a family history of lupus, chronic dermatitis, or another type of autoimmune disorder. Environmental triggers such as sun exposure, hot air, smoking, and certain pharmaceutical drugs increase the likelihood of outbreaks in people who are genetically predisposed. Women between the ages of 20 and 50 are at the highest risk of developing the condition for reasons that are not entirely understood.

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    Hi Anndee,
    Welcome to WHL! Sorry that I'm late to this thread, but our internet access was out for over a day.
    I live just South of you, in the Monterey Bay area!

    As Rob told you, I do have Meniere's overlapping with other AI diseases. I have what is called Mixed Connective Tissue Disease, which means that I have some symptoms of Lupus, Sjogrens, RA and Psoriatic Arthritis all rolled into one disease. I also have Meniere's, Raynaud's and Spasmodic Dysphonia thrown in for more fun.

    Meniere's was the first thing that I was dx'd with, back in 1998. It seemed to be triggered by my Dad having heart surgery and my subsequent plane flight to see him. The doc put me on a low sodium diet and tried a med to "dry out" my inner ears. When I was later found to have Sjogren's, which causes dryness, I was taken off of that quickly!
    I was teaching at the time, and the vertigo would sometimes hit me in the school hallway, and down I would go! I finally started using my cane in the hall, just in case.

    My other AI symptoms started appearing gradually - fatigue, joint pain, odd rashes, etc. By 2007, I was starting to be in bad shape. Then, it was triggered by the death of my mother-in-law. The SD appeared, and it is not good for a teacher to not be able to talk! Luckily, the ENT who was checking up on the Meniere's recognized it and sent me to a specialist who could give me Botox injections in the vocal cords to keep me in the classroom. I also started having sudden muscle spasms that would pull me to the floor in front of my classroom. My kids would pick me up, turn me back to the whiteboard, and we'd go on with the lesson. I finally found a good rheumatologist and was dx'd with the MCTD. I was also found to have Avascular Necrosis in my knee and had knee surgery. I spent my last school year 2008-09, using a walker to get around.

    Right now, I'm taking 200 mg. Plaquenil daily and a weekly injection of .5 ml. Methotrexate. I take pilocarpine for dry mouth and Restasis for dry eyes. I have to get the Botox injections 3 or 4 times a year. I think that the Meniere's (the rheumy also called it Autoimmune Inner Ear Disorder) has gotten better. I still hear strange sounds and have some pain, but the vertigo isn't as bad. I'm not sure if that is because of the meds or because I'm no longer in a stressful teaching job.

    We moved to CA from Texas. I had an incredible rheumy in San Antonio, but I haven't been so lucky here on the peninsula. We travel to San Francisco for my Botox shots - UCSF.
    I like the doc there - he trained with the one I had in SA.
    I wish you luck in finding out what is going on with you. If you can get a referral to UCSF Rheumatology Dept. do it. That's what I'm trying to do. There is a rheumy in private practice in SF named Dr. Carteron, who is top-notch. Unfortunately, she's not in my insurance network.
    Keep in touch. There are several of us here who live in Northern California.
    Hugs,
    Marla

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