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Old 05-09-2005, 02:31 PM   #1
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Kathie T. HB User
Lupus and ear probs?

Hi. I've been missing lately. Busy. Anyways going for another round of blood tests. All in all I feel much better, but with summer around the corner, I'll see how I fare with the sun. Some really bazaar rashes (that do not itch) have been popping up. They look almost like blisters that are not puffy, and go away without anything in a few days. Some scarring, but nothing significant. Anyways my main quiestion involved Lupus and ear probs. I have been getting increased pressure in my left ear along with twitchig inside my ear drum that is affecting my hearing. I'll see my EMT, but heard that there is an autoimmune ear disease? Anyways hope all is well! Kathie

 
Old 05-10-2005, 12:59 AM   #2
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help0001 HB User
Re: Lupus and ear probs?

Quote:
Originally Posted by Kathie T.
Hi. I've been missing lately. Busy. Anyways going for another round of blood tests. All in all I feel much better, but with summer around the corner, I'll see how I fare with the sun. Some really bazaar rashes (that do not itch) have been popping up. They look almost like blisters that are not puffy, and go away without anything in a few days. Some scarring, but nothing significant. Anyways my main quiestion involved Lupus and ear probs. I have been getting increased pressure in my left ear along with twitchig inside my ear drum that is affecting my hearing. I'll see my EMT, but heard that there is an autoimmune ear disease? Anyways hope all is well! Kathie
Hi Kathie, I'm glad you are feeling much better. I am suffering from the same problem as you. I also have a fullness sensation in mine and like a twitching sensation. I'm also getting tingling on my forehead an all, and sometimes I feel like i'm burning. As far as I am aware, and following my research, do not quote me 100% on this but I do think auto-immune diseases can create symptoms like this. Especially, because lupus does have some central nervous system involvement. I have just typed your problem into a search engine and come across an Auto-immune disease that does affect the inner ear. There are loads of symptoms, the first being hearing loss, but that does not always happen. But, I think Lupus could be the main culprit for you, especially as you've been diagnosed with it. The technical term for the Ear Disorder is called Autoimmune Inner Ear Disease (AIED)

I hope this helps you. How long have you noticed this for?

Last edited by help0001; 05-10-2005 at 01:03 AM.

 
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Old 05-10-2005, 03:17 AM   #3
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Re: Lupus and ear probs?

Good morning, Kathy T.

I know one woman with lupus who had severe crusty, weepy, itchy ear infections that took months of IV antibiotic treatment to resolve. *Maybe* this was "chondritis" (not sure what label her drs. affixed).

I've read that "tinnitus" (ringing in the ears) can occur in lupus, from antimalarials or NSAIDs. (Personal note: one of reasons I gave up step aerobics was severe ear ringing, pain and dizziness. These appeared when I was moving & it felt as though loud music added to the problem. Symptoms mostly stopped AFTER I started Plaquenil.)

Dr. Wallace writes that "autoimmune vestibulitis" is quite rare. In it, a patient experiences sudden hearing loss, possibly dizziness, possibly visual changes.

Last thought: this winter I was 100% sure ( ) I had severe ear infections, due to pain, ringing, etc. I went to the ENT, only to find I had blocked *sinuses*. My outer ears had gotten very dry---not sure if connected...

I think seeing an ENT is a good bet. Hope you get this resolved soon! Best wishes, Vee

 
Old 05-10-2005, 07:11 AM   #4
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Re: Lupus and ear probs?

[QUOTE=Kathie T.]Hi. I've been missing lately. Busy. Anyways going for another round of blood tests. All in all I feel much better, but with summer around the corner, I'll see how I fare with the sun. Some really bazaar rashes (that do not itch) have been popping up. They look almost like blisters that are not puffy, and go away without anything in a few days. Some scarring, but nothing significant. Anyways my main quiestion involved Lupus and ear probs. I have been getting increased pressure in my left ear along with twitchig inside my ear drum that is affecting my hearing. I'll see my EMT, but heard that there is an autoimmune ear disease? Anyways hope all is well! Kathie

 
Old 05-10-2005, 07:28 AM   #5
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Re: Lupus and ear probs?

I hear you about the heat (summer comming) we will just have to be careful!!!! As far as the ear problems; I suddenly (which it seemed) lost much of my hearing based on hearing test. (I have had three total from different audiologist) soooooo I don't know if having lupus is part of this hearing/ear thing or not??????? We are changing health cared insurance soooo I just hope with my copies and diagnoses all written down by the Dr.'s I seen that I will with their help (hopefully get some real help) I was also dx. with tmep (mast cell disease; it's like uticaria pigmentosa, but different) Withe mast cell disease you have too many. So with me w/lupus too the sun has turned into my not so favorite friend. I get hive/rashes/then scarring/brown spots where the hives or rash occured. I had never heard of Tmep (there are many triggers/symptoms) I looke it up on the internet and basically mast cell disease is where I finally found exactly what I had been dx with, and luckily alot of information. I am not a Dr. just someone who cares. When you mentioned ther hearing thing/and bumps that look like blisters; I thought I can relate. You may have a total different thing going on, but I would tell you'r Dr. everything or be refered to a good dermatologist. Mine told me that tmep is very rare. Mastosytosis...... skin reactions is really the bottom line as far as symptoms (luckily for me right now) I just hope it doesn't become systemic. Sorry for rambling..... My situation like I said maybe totally different. Tell you'r Dr. everything, and ask all you'r questions. You need to know; so you can start on the right treatment etc.... Good luck to you...I hope you feel better, and get some answers to what's going on with you'r situation!!!!!! Post so we will know how things go ok????? I am 44, and dealing with the lupus, and tmep so of course I have good day's and bad days, but it could be alot worse.....Take care.......let us know!!!!!
Kathy in California

 
Old 05-10-2005, 10:38 AM   #6
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Re: Lupus and ear probs?

With lupus you can have hearing problem also.

Last edited by Iwantacure; 05-10-2005 at 10:39 AM.

 
Old 05-15-2005, 12:28 PM   #7
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Re: Lupus and ear probs?

I've been wondering if everone is muttering or if my hearing has stared degrading...so was looking into this a bit.

I know one of the rarer, but still possible, side effects of prednisone can be hearing loss, but I only find it described as "ringing in the ears or hearing loss". Can't seem to find any aditional infomration, so if anyone has any information or has experianced this side effect, I'd *really* like to know more about it.

I did find "autoimmune dendalymphatic hydrops" - an autoimune version of "water on the ear", which might be what you're talking about....it seems to be purely autoimmune, not plaquenil, related.
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Old 05-15-2005, 12:31 PM   #8
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Re: Lupus and ear probs?

sorry, I meant "Endolymphatic hydrops"
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Old 05-16-2005, 08:02 AM   #9
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Re: Lupus and ear probs?

Just to throw in here, there is an autoimmune disease that affects the ears. A prominant, conservative radio talk show host lost his hearing as a result of this disease. I don't remember the name of it but DH is addicted to this radio show host and when he comes home I'll ask if he remembers what R*sh Limb**** has. I know this man has undergone implant surgery to give him back some of his hearing. I don't think ear problems should be just dismissed if you have any autoimmune thing going on.

May God Bless and Keep Us All
Patience 50

 
Old 05-16-2005, 03:10 PM   #10
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Re: Lupus and ear probs?

To Everyone, re: HEARING LOSS.

Just encountered today an article stating that VASCULITIS can cause hearing loss & other problems. This disease can occur with lupus, or "standalone"; and it also can affect a very wide range of organs & systems.

But, of course, there are probably umpteen reasons for hearing problems, including simple genetics...

Wishing everyone well! Vee

 
Old 05-16-2005, 05:15 PM   #11
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Re: Lupus and ear probs?

Hi Kathi~ Isn't it bizarre when some strange, new symtom pops up?
Four years ago I suddenly began having a "fluttering" in my right ear that was made worse by certain tones (i.e. phone, microwave, certain musical instruments). It's like a bass drum banging in my ear. I don't think my actual hearing capacity was diminished and it wasn't painful, but was highly annoying, disconcerting and ruined my enjoyment of music and movies.

Finally after 6 months, I saw a hearing specialist who said it was "tympanic inflammation", usually caused by a virus that produces excess movement of this membrane. I guess there are med.s that will reduce the symtoms but the side effects didn't seem worth it. The good news is that it seems to have gotten somewhat better in the past few months on it's own.

I forgot to mention this ear thing to my rheumy so I have no idea if it's lupus related.
Hope your problem clears up soon!!
Good Luck!
Kiley

 
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