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I was wondering if hearing loss is common with generalized MG, and would like to know what others have experienced. Just over a month ago I started taking azathiaprine and prednisolone in addition to pyridostigmine. A day later I felt as if I had an ear infection, and then suddenly a day later lost total hearing in the one ear. An ENT specialized examined me and could not find a cause for this. He said that it was possibly my Myasthenia or the azathiaprine. A CT scan showed no cause either. I’m puzzled by this and would appreciate any opinions or comments. Thanks
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I have poor hearing due to an acoustic neuroma and general aging, not because of medication. I took azathiaprine for ten days and it made me so sick that I would believe it could cause anything, including hearing loss. I’m doing great on mycophenolate as an immunosuppressant, so there are certainly alternatives to azathiaprine.
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Thank you for your post. I wasn’t happy to take the azathiaprine either but I was really struggling at that time. It seems to have helped me, but I will ask my neurologist about the alternative you mentioned. The Ent specialist ruled out acoustic neuroma. Now just have to get used to the strangeness of not knowing where sounds are coming from and poor hearing.
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I hope you have at least been evaluated for hearing aids. They really helped a lot, even though I have close to zero hearing on the side with the neuroma. It is weird to lose the directionality of sound, but the hearing aids improved that. Of course if you really have zero hearing in that one ear, hearing aids cannot help.
Other than the hearing issue, are you tolerating the azothiaprine? I know, that’s like asking “Other than that, Mrs. Lincoln, did you enjoy the play?”
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I have hearing aids, but the one ear is totally deaf. I am managing with the azathiaprine now, apart from stomach issues, it seems to be helping. But I”m tapering off prednisone for 6 weeks and will then stop. I wonder if the azathiaprine will be a problem then. I’m 69 years old, strong in many ways and can still appreciate the ‘play’. It’s a way of looking at life itself. I do not have a local MG community whom I can relate to, so this is a good forum to learn and share. Thanks.
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I usually lose my left ear hearing during winter. I discovered the follow links some time ago.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5718710/
https://myastheniagravisnews.com/news/hearing-tests-can-help-diagnose-monitor-mg-study-suggests/ -
Dear MG friends,
I am also facing hearing loss, but in stress situations or when I am having much muscle weakness. I am also facing continuous voices in my ears. Is anyone facing migraine also like me? Please share how you manage your life routine? I am 33 and I have to work for my family but my MG always loses my confidence level to zero when People used to laugh at my eyes.
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Thank you Lionel. I have tried to educate myself about MG for several years, and these articles have opened my eyes (though not my ears).
I am going to call my audiologist and find out if my recent tests might need to be redone with the specific tests for MG related hearing loss that are described in the articles you have shared.
Doug
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Azathioprine, along with pyridostigmine, has been a game changer for me. I have experienced no hearing loss, and all previous symptoms are well under control. The azathioprine was added after a serious myasthenic crisis event that had me in the hospital for 14 days. During hospitalization I received the IVIG treatment and was also put on prednisolone, but was able to wean off of it after about six months.
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<p style=”text-align: left;”>Hi Rudolph, I was actually in quite a bad state when I was prescribed azathiaprine and prednisone to supplement pyridostigmine. I am also tapering off the press until I stop them. But my MG symptom’s are being helped. As the doctors said, it was only guesswork on the cause of the sudden deafness. With our illness, so much can affect us, and every single one of us is different. So, we just have to learn and recognize our own situation.</p>
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Hello MG friends ,
I wear hearing aids and can barely hear from both of my ears and it is due to MG, I was on Azathioprine and Prednisone for longest period of time and was going for IVIG monthly. I stopped taking Azathioprine and Prednisone about 6 years ago , due to side effects ( elevated liver enzymes and weight gain) . Stopped IVIG about 1.5 years ago as the effects were only lasting about 3 weeks and I was having to go back for infusions sooner. At this time my MG symptoms have been well controlled with Cellcept, Mestinon and Rituximab infusion every 4-6 months.
Please make sure to get your liver enzymes checked every couple of month ,while on Azathioprine
Relationship between hearing function and myasthenia gravis: A contemporary review – PMC (nih.gov)
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The same thing happened to me, but not as badly (I still could hear a bit). However, it never occurred to me that it might have something to do with Myasthenia gravis (I have ocular Myasthenia). Blaming it on the air conditioning and high humidity (I’m retired and live in Bali, Indonesia), I put on a t-shirt and socks at night and took extra vitamin C with zinc, which altogether helped.
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Hi Thomas, it was only a possibility that MG might be the cause because hearing loss is known to be linked to our illness. But again, we are all different and the ENT specialist did say it may be temporary. So I do hope that we both improve. I know Bali is a beautiful place . Have a happy retirement.
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Hi Dev,
what I forgot to write is that I am “ear healthy” now with a normal hearing. If I have the feeling that the “ear infection” could come back (it happens from time to time), then I take two vitamin C tablets with zinc (100 mg each) as a precaution, which helps.
I also took during the time when I had hearing problems
Ibuprofen (400 mg each) once or twice a day (over a period of about two weeks), which also helped.Identical to your case, I saw three doctors (two of them ear specialists), all of them came to the conclusion that everything was fine with my ear, which supports your thesis that the hearing problems could be related to Myasthenia.
I hope you will be able to hear again soon and I wish you good health.
Thomas
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many years ago I had difficulty hearing could not find anything on hearing loss for many years then I tried looking it up a couple of years ago and bingo they had something on hearing loss and MG I know it was from my MG as somedays I could hear very well and others days I could not. I am on Soliris right now but my doctor wants me on Vyvgart no if and or but about it. Not sure if I will as I react to everything (badly)
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I’d be surprised if it turns out that MG can cause hearing loss. Since MG only affects voluntary muscles, and I don’t know of any voluntary musculature in the ears, it seems reasonable to suspect an MG med, or else another condition or disease.
Mike Stabile
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