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

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.

 

 Magon, it’s wise that you’ve asked about complications. Two relevant clinical citations to your concern:

  1. US Food and Drug Administration. Tepezza Prescribing information. Accessed July 24, 2023. https://www.hzndocs.com/TEPEZZA-Prescribing-Information.pdf
  2. Terry J. Smith, MD, Qianhong Fu, MS, Robert J. Holt, PharmD, MBA. Hearing-Related Adverse Events and Quality of Life Assessments in Thyroid Eye Disease Patients Treated with Teprotumumab. Endocrine Practice. DOI: https://doi.org/10.1016/j.eprac.2023.03.245

All the best!

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