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

Hi folks -

What wasn't said, but possibly implied, with my original comments is that potential medical solutions present you with having to make a choice.  And once you get beyond coming up with all the pluses and minuses, you still have a choice to make.  

Pretty simple actually.

The pluses and minuses might be real barnburners in their implications, but at the end of the day, you still get to choose.

By comparison ... my stuff is ultimately fatal, its behavior is well known, its timeline trajectory is well documented, I will predecease my wife and brothers, and my participation in trials with experimental drugs is to quite frankly help out the next generation of sufferers, as my survival is already spoken for.  Boy, that sounded dark.  Time for Metallica's S&M!

On one hand, I would probably give up my left tit to be considering your choices.  

And I get it, what you are facing ain't exactly biscuits and gravy.  

See how it goes.  I appreciate your sharing what's going on with you, because there are not many outlets available to do that anonymously.  I don't think you are seeking advice from a group that couldn't agree on a power cord if you paid it to.  

Sometimes, you just have to vent to the wind.

Good luck.  

Rich 

 

I applaud your seeking opinions with your hobby colleagues. But isn’t this a conversation — rather than an email string — also to be conducted with your healthcare team of ophthalmology, endocrinology, and primary care? If their guidance is too vague or still unsettling, ask for a referral to an academic health center starting with opthalmology. All the best.

What did we do prior to all the biological drugs.for 40 plus years and head and neck trauma .having trained in new york every other night call for 6 years.i imagine I put every part of the body back together.i trained under attending that went to Germany one of 5 to learn endoscopy sinus surgery and those that wrote thyroid textbooks. Enjoy the music and the search.i will always impart medical knowledge.

@wfowenmd I was just introduced to Tepezza as a possibility for me and I'll be going through it with multiple doctors. Here, I'm just discussing my feelings about hearing loss with other people who value their hearing enormously.

@mahler123 Yeah, they've already been sued for misrepresenting the severity of the hearing loss, and that doesn't mean a whole lot (lawyers will do their their thing) but it does mean their website now has a very strong caution against permanent deafness. Probably more for legal reasons than because it's really a serious side-effect. Very alarming to read, but maybe overstated.