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

Showing 1 response by mahler123

I’m a recently retired Primary Care Physician.  I don’t have experience with the drug.  I can say that if it really caused a significant-like one in 5000 chance- of causing permanent hearing loss it wouldn’t have been released.

  You have to realize that anything that happens to any patient while they are in a trial, has to be reported.  I suspect one or two people taking it in the trials went deaf because they were going to go deaf anyway.  If it really caused deafness the company would be afraid of some mega legal judgment against them.

 

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