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  3. 192311-19946

Anyone take Tepezza?

This is a question about hearing loss caused by the drug Tepezza.

I have Thyroid Eye Disease which causes vision problems, and worse makes certain movement-related conditions I have worse. I can function okay at an easy part-time job but I'm about 60% disabled and it's getting worse. A new drug for T.E.D. is available called Tepezza. It's given in 8 infusions. Only 8 are needed. 

The scary thing for me as an amateur musician and music lover is that it can cause what they optimistically call "hearing problems." This includes stuffed ears from eustachian tube dysfunction (reversible after treatment concludes), but also partial or even complete hearing loss (usually at least partially reversible but sometimes permanent). About 15% of the participants in the trial had hearing problems and it seems like most were not the scary hearing loss type.

The thing is, I believe Tepezza could restore me to full employment, and it would be a miracle drug if it works for T.E.D. and creates only minor side-effects. 

Between a rock and a hard place. At least I can sell my expensive audio equipment after I get the hearing aids. 

magon
Post removed 
rar1's avatar
rar1
1,784 posts
 

I can’t see how you are between a rock and a hard place. Sorry. Time to get real though, you’re sick and you have the chance to get better. Your stuff is curable and that is a HUGE plus.

I have been receiving infusions every other week for the past 3 years (75 so far) for an experimental drug (non FDA approved) that will hopefully prevent the onset of one of the fatal conditions of advanced cirrhosis (cryptogenic, decompensated). My stuff is not curable and I am too old and too sick to believe in magic cures. And it’s all good.

My interest in listening to music has definitely fallen off. I still buy CDs and records; I have 2 phono cartridges sitting for the past year that have not been installed. My mood and attitude have always been first rate, my focus has changed though and I am fatigued all the time.

And that is what you will most likely experience, though it’s not listed as a side effect. FATIGUE, like you can’t believe. Plus you have to follow a strict (er) eating regimen, which is true for all illnesses. Helps tremendously to give up the booze, tobacco, recreational stuff ... it all affects the liver. Liver issues affect eyesight (toxins aren’t filtered as effectively).

I get your nervousness and gallows style humor. But you have a way forward. Good luck. Keep me posted.

Rich

 

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magon OP
49 posts
 

Well, my main profession right now is tutoring, and if I lose significant hearing I probably won't be able to do that. Hearing problems will interfere with most jobs. 

Also, I have some mental health diagnoses and PTSD and music is the most comforting thing in life. Also listening to meditation teachers' voices. It's no trivial thing to lose that. 

mark200mph
204 posts
 

There is an alternative to your drug.go find a good ear nose and throat surgeon that does alot of trauma facial and sinus surgery..orbital fat can be reduced through surgery and it is not without risk but in the hands of a skilled surgeon with image guidance intra operative is an alternative.good luck on your search.

howardlee's avatar
howardlee
59 posts
 

Thyrotoxicosis is a disease of overactive thyroid hormone secretion which can have a side effect of exophthalmos (bulging eyes) which the drug company making that medicine for it has made up the name TED the better to sell it on TV. None of this has anything to do with cirrhosis, which is a liver disease of real seriousness. This forum is no place to get information on hearing loss from a drug treatment like you’re talking about. For that you need to consult an endocrinologist or an ENT physician who can give you an estimate on the risk factors involved here. There will be studies with percentages for that specific problen (and for cure rates). It may be the likelihood of what you’re concerned about is quite low ( or the opposite).  Chances are good an ophthalmologist would know this as well. I’ve never heard of this surgical approach but removing fat around your eyes sounds tricky to me and likely temporary. Get some good advice and best luck with your health and your audiophilia. 

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