Anyone take Tepezza?

@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.

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

@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. 

 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!

@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.

@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.

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.

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.

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’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.

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. 

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.

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.