2. misc-audio
  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
magon OP
49 posts
 

@wfowenmd By the way, I keep thinking people will think magon is related to Maga. It's just Mike + Audiogon and I selected it long before Maga existed. 

Anyway, thanks for the links. I see that the people with hearing issues reported quality of life increase after treating Thyroid Eye Disease. It's true that my vision could potentially improve tremendously. Right now I have a great deal of eye strain in trying to get my eyes to converge and I can only converge them looking straight ahead. I can't look to the side, up, or down and see anything reliably. That means my neck has become stiff, which is not a good combination with my chronic pain issues. And potentially all that could improve. Not to mention my eyes hurt like hell (the eye muscles; hurts to move them; common symptom of TED). I have to tape my eyes closed at night. 

But beautiful music, with good highs, is so important to my life. I mean like the most important thing in my life other than close friends/relationships. The most existentially comforting, numinous thing in my life. I can't imagine losing the highs, let alone significant hearing loss. That would decrease my quality of life just as much as vision problems.

What I can't find is a report on the severity of these clinical study hearing issues and whether they resolved after the infusions were done. They only mention a. certain percentage had hearing issues, and other places say that they could be minor hearing issues which resolve within a few months of stopping the infusions. 

wfowenmd
87 posts
 

A seasoned academic physician will be able to retrieve the info you seek. Such tasks often comes with their job 😉

magon OP
49 posts
 

@rar1 Well you definitely have my compassion for your situation. 

Everyone has something in their lives they feel is or might be a disaster. And sometimes we lose perspective, because not every person's disaster is equally disasterous. Billionaires worry about losing 10% of their money or bad public relations. That's what qualifies as a "disaster" to them, despite someone facing your issues thinking that's nothing. 

I just think losing my hearing would be a disaster. That's my perspective, however much it might not be seeing the big picture. Also, most hearing issues people had were minor, so maybe I'm worrying too much. I have at least 20 years of life left, probably more (I'm 56; I've already had a stroke though) and I don't want to spend those years without hearing. But that's what I worry about right now.

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