I’d like to get the general impression from the group on this paper showing a dose dependent negative impact on cochlear cell health by Rapamycin. Anybody have anything more recent or in humans that follows this up? : Inhibition of mTOR by Rapamycin Results in Auditory Hair Cell Damage and Decreased Spiral Ganglion Neuron Outgrowth and Neurite Formation In Vitro - PMC
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I was diagnosed with Auditory HC damage which resulted in some (30%) hearing loss after being on rapamycin for 14 years. Now my dose is very reduced in comparison with what I was taking when initially prescribed. I wish I knew about that side effect earlier. Unfortunately no care provider mentioned that to me (wondering why).
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I’m really sorry to hear of your experience. Do you mind sharing your dose and length of time at that dose as well as what lower dose you are on now? How long after starting Rapamycin did you notice a change in hearing? How did it initially present?
I’m a big Rapamycin fan and current user but I feel it’s neccessary to look at the downsides as critically as the benefits.
If you had known, what would you have done differently?
I ask because I’m evaluating what dose to take going forward. I have access to auditory assessment tools and plan to monitor hearing at least every quarter. I have a baseline assessment before Rapa started to use as comparison.
I think not many have seen this study. It seems unknown to other Rapamycin prescribers I have spoken with.
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My dose is for kidney transplant, so it wouldn’t apply to you. But the lesson learned is that suppressing mTOR too much and ignoring side effects ( even minor) could be dangerous, especially long term. The dose is everything!
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What would you consider such minor side effect?
Mouth sores, acne. For me, it’s an indication of overdosing. And overdosing for a long time will definitely create problems.
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I don’t know but there are also these studies that found the contrary (and are in vivo vs yours in vitro)
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Thanks for these Arhu. Reassuring. Hoping to find some in vivo human studies in future. I think there is less risk of hearing loss using rapamycin pulsed, low dose and not with other anti rejection drugs as in the case of tranplant patients.
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