View Full Version : Autoimmune Inner Ear Disorder
05-09-2007, 11:55 AM
Is anyone here knowledgable about this disorder? I'm worried I might have it. I've had trouble hearing off and on for 2 1/2 years now. Lately, I've had a lot of pressure and pain in my ears. Flushing out my ears and antihistamines haven't helped. The methotrexate I started last month hasn't helped either. I'd appreciate any thoughts you might have.
05-10-2007, 06:51 AM
I'm having similar problems and I'm calling to set up an appt today with
the Neurotologist. The Ear doc said he may suggest methotrexate.
I did a little looking around and the only treatments I saw listed were
steroids and methotrexate.
It is interesting that the methotrexate has not helped and I found an article recently concerning that issue. I do not want to needlessly take this drug.
Hearing Not Preserved by Methotrexate
Background: The immune system sometimes makes a mistake and produces antibodies that react with the body's own tissues. These are autoantibodies. Some autoantibodies may be directed against the inner ear. If untreated, this may result in rapidly progressive loss of hearing in both ears, ending in deafness. There may also be vestibular symptoms such as vertigo and ataxia (wobbliness). Treatment is aggressive steroid therapy.
The Gist: A clinical trial was underway to see if the antimetabolite drug methotrexate could maintain the hearing of patients with autoimmune inner ear disease who had been successfully treated with the steroid prednisone. Methotrexate failed to maintain hearing. The trial was halted.
Comment: This was an excellent clinical trial and a good example of how negative results are valuable. Methotrexate is not an innocuous drug. The knowledge that methotrexate does not help in this disease will spare patients from being needlessly exposed to it.
For related information, please visit the Hearing Center.
Barbara K. Hecht, Ph.D.
Frederick Hecht, M.D.
Medical Editors, MedicineNet.com
Methotrexate not effective in maintaining improvements in hearing gained from prednisone
Oct 8, 2003 -- Methotrexate is not effective in maintaining hearing in patients with autoimmune inner ear disease (AIED) who had been previously treated with prednisone, according to the results of a multi-center study.The study was published in the October 8 issue of the Journal of the American Medical Association.
AIED is a rare disorder that can result in rapidly progressive hearing loss and deafness if left untreated. Because evidence suggests that an altered immune response may play a role in its development, therapy that targets the immune system is considered the standard of treatment for AIED. A number of treatments have been proposed for long-term management of AIED, but lack scientific validation.
High-dose prednisone is known to reverse hearing loss and maintain hearing, but usually cannot be given for long periods of time. Prednisone in combination with other drugs has been proposed as an effective approach to long-term management of hearing loss due to AIED. Cytotoxic drugs were initially considered but many of these agents can have serious side effects that may result in unacceptable long- term risks, especially in young people.
Methotrexate has been shown to improve hearing and balance in Meniere's disease and other hearing disorders and is generally considered safer and better tolerated than cytotoxic drugs. Evidence from small, uncontrolled studies suggested that methotrexate might be helpful in treating AIED. A randomized, controlled study was needed to determine the drug's potential to maintain hearing achieved with prednisone therapy.
Participants for the study were recruited at 10 tertiary care centers around the country. A prospective, double- blind placebo controlled study was conducted with 67 AIED patients who reported progressive loss of hearing in at least one ear and whose hearing improved after one month of receiving high-dose prednisone.
Study participants were randomized to receive either methotrexate or placebo, while prednisone was slowly tapered in both groups. Final hearing assessment was carried out at 52 weeks to determine each participant's hearing level.
The researchers found that patients in both the methotrexate and placebo groups had similar rates of hearing loss. No significant differences were noted in the two groups with respect to standard measurements of hearing, i.e. pure tone air conduction thresholds and word identification scores.
"This randomized, controlled clinical trial demonstrates that methotrexate is no more effective than placebo in maintaining hearing improvements in patients with AIED who had initial benefit from high-dose corticosteroids," said James F. Battey, Jr., M.D., Ph.D., director of the National Institute on Deafness and Other Communication Disorders, which funded the study. "Recruitment into the study was halted as soon as it became apparent that hearing loss was comparable in both groups."
Dr. Battey adds, "The results of this study clearly underscore the need for more effective and less toxic therapy for AIED, and that randomized, controlled clinical trials are necessary to establish benefit."
Source: National Institutes of Health (www.nih.gov)
Last Editorial Review: 10/9/2003
05-17-2007, 01:32 PM
I went to the neurotologist today. He said the hearing loss and pain was
auto-immune related. I have to go get an MRI of my head. I guess to rule
out a tumor. Then back to doctor to discuss any treatment.
Suzanne960, I hope you talk to your Rhuemy about your problem too
and maybe get some relief.
05-18-2007, 10:04 AM
Thank you, Henry. I saw my PCP this morning, who referred me to my ENT, to make sure there's not fluid stuck behind my ears. Maybe I'll get lucky, and that will be the problem.
06-12-2007, 02:39 PM
I went to the Neurotologist today and he looked over my brain MRI and said
"No tumors" :D
He is not going to make me take methotrexate. :D
He just said deal with pain best you can and call him if my hearing changes
It was a good way to start the day.
06-13-2007, 06:46 PM
I was diagnosed with Meniere's syndrome 7 yrs ago and was just diagnosed with possible Lupus in April. My PCP seems to feel that they are related. The ENT that she sent me to agreed with the earlier diagnosis of Meniere's. I know that one or two others on this list have mentioned hearing problems, so hopefully one of them will join this thread. Mine is definitely an inner ear problem, with ringing in the ears, strange noises, dizziness, loss of balance, and loss of some hearing. It might be something for both of you to ask about.
06-14-2007, 06:45 AM
Fortunately, I have not experienced any dizziness or vertigo.
I've got permanent hearing loss in left ear now. High frequency is gone.
Doctor felt it was auto-immune related.
I didn't know about Meniere's syndrome. I looked it up and it doesn't
seem to be my particular problem.
It sounds like a frustrating condition, Marla. I hope your condition improves.
06-16-2007, 07:42 PM
I seem to be stuck with it. Luckily, I don't have the vertigo that makes one nauseous. I just have an occasional bout of dizziness when the wierd sounds start in the ears. Couple this with the joint pain and my knees and hips just suddenly "giving out", and you have one Latin teacher who falls down in front of her class once in a while. I'm up-front with my students, so I explain Meniere's to them and tell them that I truly didn't drink anything interesting with my lunch. They are fairly understanding.
I've lost the low frequencies quite a bit. My husband has rigged up speakers so that I can hear the TV from all parts of the family room, and even the kitchen. I have fun with it when I can't hear the boys in the classroom. Teen-aged boys tend to mumble. When they come up to my desk and mumble "Can I go to the bathroom?" I often have to make them repeat it into my "good" right ear. After a couple of repetitions, I merrily say, "Oh, you need to go potty? Sure, here's the pass." Some of them are so mortified, they stop asking to go, which is my goal, anyway!
As you can tell, I've learned to compensate fairly well. I just worry that one day, it will all (meaning both the Meniere's and the lupus) get worse and I won't be able to drive or teach any longer. In the meantime, I'll continue to have fun!
Hm I always wondered why teachers never liked students going to the washroom. I had one teacher that would never let me go, and I got a really bad bladder infection from always having to hold it in.
06-20-2007, 08:41 PM
Those that have a real reason to go are one thing, but in our large big-city school, it can be a very different reason. We have many who go to the restroom for the traditional "smokin' in the boys' room" (often it isn't just tobacco, also). Many go there to use their cell phones. We have a rather large gang presence, so they go there to tag, or even worse, to fight with a rival. We've had more than a few pregnancies which have resulted from couples meeting in the restroom. The entire school of 3000 people has had to be evacuated several times because of fires being set in the restrooms. We've also had an epidemic of "cutters". These are kids who sneak off to the restroom and cut on their own skin with something sharp. Some of them are actual suicide risks. It would be really difficult to face the parent of a dead child who blames me because I allowed her to leave my classroom. We teachers have a whole list of things that terrify us now-a-days.
Besides this, I REALLY hate when someone is so rude as to get up and walk out when I'm in the middle of an important lesson, rather than waiting politely until I'm finished speaking.
Sometimes teachers seem really cruel, but we usually have good reasons for it!
11-30-2008, 08:36 PM
Hello all - has anyone had any luck with medication, or with the pain subsiding? I've been struggling with pain/tenderness in my ears as well. A couple of times over the last couple of years, I've had my Dr. check for an ear infection, but they don't see anything. Now it is pretty constant, so I'm thinking I should talk to the rheum.
With your experiences, do you suggest I try the rheum or an ENT first?
Hope your hearing has not disintigrated any more. Hope things are well with you all.
12-01-2008, 01:06 PM
Many of us with Lupus also suffer from Fibromyalgia. One of the common symptoms of Fibromyalgia is TMJ. To many, the symptoms feel like an ear infection, but there is not infection, only constant pain.
TMJ (Temporomandibular joint disorder (TMJD, TMJ or TMD), or TMJ syndrome) is an umbrella term covering acute or chronic inflammation of the temporomandibular joint, which connects the lower jaw to the skull. The disorder and resultant dysfunction can result in significant pain and even impairment. Because the disorder transcends the boundaries between several health-care disciplines — in particular, dentistry, neurology, physical therapy, and psychology — there are a variety of quite different treatment approaches.
Do any of the below symptoms relate to you?
TMJ Syndrome Symptoms:
Pain in the facial muscles and jaw joints may radiate to the neck or shoulders. Joints may be overstretched. You may experience muscle spasms from TMJ syndrome. You may feel pain every time you talk, chew, or yawn. Pain usually appears in the joint itself, in front of the ear, but it may move elsewhere in the skull, face, or jaw.
TMJ syndrome may cause ear pain, ringing in the ears (tinnitus), and hearing loss. Sometimes people mistake TMJ pain for an ear problem, such as an ear infection, when the ear is not the problem at all.
When the joints move, you may hear sounds, such as clicking, grating, and/or popping. Others may also be able to hear the sounds. Clicking and popping are common. This means the disc may be in an abnormal position. Sometimes no treatment is needed if the sounds give you no pain.
Your face and mouth may swell on the affected side.
The jaw may lock wide open (then it is dislocated), or it may not open fully at all. Also, upon opening, the lower jaw may deviate to one side. You may find yourself favoring one painful side or the other by opening your jaw awkwardly. These changes could be sudden. Your teeth may not fit properly together, and your bite may feel odd.
You may have trouble swallowing because of the muscle spasms.
If these fit your pain, talk to your doctor about the possibility of TMJ and even Fibromyalgia. Let us know what you find out.
Peace and Blessings
12-05-2008, 10:26 PM
When I read your reply, I was really surprised. Then I was, once again, extremely thankful for your willingness to share what you know. I dug around on the internet and I had a V-8 moment. Thank you :)
So, I saw my rheumatologist this week, and he noted that my vitamin D was also really low, so once we get that corrected, he'll move on to leftover symptoms. 3 months of vitamins. Meanwhile, I'll be seeing an ENT. I'll be very interested in the end to figure out how this all works together, and how they will help me get the ear pressure to an acceptable level.
I am apparently finding out first hand what patience really is all about. And I'm learning that not being in control isn't the worst thing that ever happened to me. It is certainly easier to let go of trying to control things when I have this support system along with me. Thank God for his provisions.
12-07-2008, 03:09 PM
Nine years ago I went suddenly deaf in my left ear. High dose prednisone did nothing to restore my hearing. Doctors still don't know if it was AIED or a virus. Last year I was dxd with UCTD and recently, lupus and Sjogren's. Several months ago I developed ringing in my hearing ear which put me into a panic. I thought it might be from the Plaquenil but the rheumy thought not. I saw two ENTs who couldn't help me. I was put on pred. again but it did not stop the ringing. I was also on MTX at the time. I would also occasionally get a feeling of fullness in the deaf ear. All the doctors suspect AIED. I still have the ringing that comes and goes. I'm on Imuran now and there's still no change. Both the ENT and rheumy gave me a prescription of high dose pred. to take immediately if I suddenly lose the hearing in my good ear and can't get hold of them immediately. I'd like to think it would help, but I'm not too confident at this point.
Fortunately, the audiology test I had nine months ago and again recently show no change. I'm still borderline normal in my hearing ear. However, the audiologist said she sees a lot of hearing loss issues in Sjogren's. Since it has some common traits to lupus, I suspect lupus can be just as big of a problem.
Since some people are helped by taking pred. I believe anyone who has an autoimmune problem and hearing problems should ask their doctor about having a prescription of prednisone on hand for an emergency. Time is of the essence when dealing with hearing loss caused by AIED. I also think that the reason my hearing hasn't gotten worse in my hearing ear is because my lupus/Sjogren's is under pretty good control. That is also very important.
12-07-2008, 09:34 PM
Absolutely! We all have to learn, in our own way, to Let Go and Let God :lol:
I hope that you get some answers and that you and your doctors agree on a treatment that works for you.
I am glad to hear that you have doctors who are sincerely working to ensure that you have what you need when you need it! I am also happy to hear that you Lupus and you Sjogren's is pretty much under control. I hope that it remains that way and that you have no further problems with your hearing.
Peace and Blessings
12-08-2008, 05:48 AM
12-08-2008, 10:05 AM