#1

About 3 months on and I’ve had this slight hoarse voice since the first week which has rather progressively persisted and slightly worsened- it’s just well, almost like a new but worse voice change. Almost (but not near as bad) along the lines of RFK Jr. Just this dry hoarse, other person kind of voice and also a bit difficult to modulate the volume of my voice (I’m a bit loud now). Taking a break from Rapamycin 10mg now about 10 days and it has failed to abate. Anyone else with this issue or ways to counter it? I wonder what it’s root cause is. I presume it’s just my immune system dipping down and being in a minor state of being ‘pre-sick’ like when one gets a hoarse voice just before (and during) getting sick…

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#2

Three months seems like too long a time frame to attribute this to being (pre)sick… since you mention RFK Jr., I recall reading his voice condition has neurological etiology. Definitely sounds serious enough to see a specialist over, do hope you can get professional help.

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#3

I heard RFK got that from a vaccine? My doctor’s wife has the same thing. I’m curious if it’s true.

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#4

I wouldn’t presume anything. If it was me, I’d pause the rapamycin until the horse voice cleared up. If it didn’t clear up after a few weeks, I’d see a doctor.

What is your weight? 10mg/week is a moderaly high dose, especially if you lower in weight and / or female.

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#5

@hunterama1 As well stated above, you do not want to let something potentially serious slip through the cracks.

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#6

What RFK Jr has is rare (spasmodic dysphonia). There is a much more common condition called muscle tension dysphonia. And sometimes differentiating between the two based on symptoms can be difficult and requires evaluation from a voice pathologist. Although there are refractory cases, MTD generally responds well over time to voice therapy exercises while SD is usually chronic and managed with Botox injections into the vocal fold area every few months or so. Having a few drinks has been reported to temporarily improve SD for up to a few hours in some patients.

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#7

My weight is 207 and I’m 6’0. 51 yrs. I suppose I shouldn’t have mentioned RFK Jr - I’m fairly certain it’s not some neurological condition- I have read that hoarse voice is a known side effect of rapamycin and I just sort of accepted it. Sounds like most people aren’t getting this side effect though. I read the recent article posted on here as to sulforaphane as a possible or plausible substitute for rapamycin. So I’m looking into this. What a bummer. Maybe I should lower my dose to 5mg as another alternative. I’ll stop until the hoarseness goes away then. Maybe just eat some broccoli sprouts. (!) I will update this post when it clears up and if not in the next couple weeks will see doc.

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#8

@hunterama1 Did you start Rapa at 10 or gradually work your way up?

#9

Just checking the official list of side effects - and you are right - its on the “less frequent” side effect category. I’ve not heard of anyone else having this problem, but it sounds like someone must have reported it at sometime (though these side effect lists seem to have every possible side effect people might report, so I’m not sure how valid they are, and if they are compared to placebo ).

You can see the side effects people here are reporting: Side Effects of Rapamycin (part 2)

And you can see the Mayo Clinic list below that are reported in Transplant Patient populations:

Check with your doctor immediately if any of the following side effects occur:

More common

  1. Accumulation of pus
  2. anxiousness, unexplained
  3. backache
  4. black or red, tarry stools
  5. bleeding from the gums or nose
  6. blurred vision
  7. body aches or pain
  8. bone pain
  9. bruising
  10. burning or stinging of the skin
  11. burning while urinating
  12. burning, dry, or itching eyes
  13. burning, tingling, numbness, or pain in the hands, arms, feet, or legs
  14. change in mental status
  15. changes in skin color
  16. chest pain
  17. chills
  18. confusion
  19. cough
  20. dark or bloody urine
  21. deafness
  22. decreased urine output
  23. decreased vision
  24. difficulty with breathing or swallowing
  25. dilated neck veins
  26. discharge from the eyes
  27. dizziness
  28. drowsiness
  29. dry mouth
  30. earache
  31. excessive tearing
  32. eye pain
  33. facial hair growth in females
  34. faintness or lightheadedness when getting up from lying or sitting position
  35. fast, slow, or irregular heartbeat
  36. fever
  37. flushing or redness of the skin, especially on the face and neck
  38. general feeling of discomfort or illness
  39. increased hunger
  40. increased menstrual flow or vaginal bleeding
  41. itching, pain, redness, swelling, tenderness, or warmth on the skin
  42. lack or loss of appetite
  43. large, flat, blue, or purplish patches in the skin
  44. loss of sexual ability, desire, drive, or performance
  45. loss of voice
  46. muscle pain
  47. nasal congestion
  48. nausea or vomiting
  49. numbness or tingling around the lips, hands, or feet
  50. pain in the chest, groin, or legs, especially the calves
  51. painful cold sores or blisters on the lips, nose, eyes, or genitals
  52. pale skin
  53. prolonged bleeding from cuts
  54. rapid heartbeat
  55. rash
  56. red or dark brown urine
  57. redness or swelling in the ear
  58. redness, pain, or swelling of the eye, eyelid, or inner lining of the eyelid
  59. ringing in the ears
  60. runny nose
  61. seizures
  62. sensation of pins and needles
  63. severe constipation
  64. severe vomiting
  65. severe, sudden headache
  66. slurred speech
  67. sore throat
  68. sores or white spots on the lips or in the mouth
  69. stomach cramps, pain, or upset
  70. sudden decrease in the amount of urine
  71. sudden loss of coordination
  72. sudden, severe weakness or numbness in the arm or leg
  73. sweating
  74. swollen, painful, or tender lymph glands in the neck, armpit, or groin
  75. tenderness, pain, swelling, warmth, skin discoloration, and prominent superficial veins over affected area
  76. tremor
  77. ulcers on the lips or in the mouth
  78. unusual tiredness or weakness
  79. vision changes
  80. weakness or heaviness of the legs
  81. white patches in the mouth or on the tongue
  82. yellow skin and eyes

Less common

  1. Bloating
  2. change in size, shape, or color of existing mole
  3. hoarseness
  4. mole that leaks fluid or bleeds
  5. new mole
  6. pains in the stomach, side or abdomen, possibly radiating to the back
  7. skin ulcer or sores

Source: Sirolimus (Oral Route) Side Effects - Mayo Clinic

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#10

I started at 10mg right out of the gate about 5 months ago. No side effects at all but then after about a month I noticed mild hoarse voice. This has persisted. Usually it’s just 3-4 days after I take the 10mg and fades down and back to normal so I figured it was a dip in the immune system but the last 6 or so weeks it’s been constant hoarse voice and has stuck around in the last 10 days since I stopped. So I’m getting a bit concerned about my opera career. (joke). I’m a little surprised no one else has ever brought up this topic.

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#11

Many of us here recommend starting Rapa at 1 or 2 mg a week and increasing as tolerated. But first address the hoarseness.

#12

An unexplained persistent hoarseness (> 6 weeks) in someone aged 40 is serious and concerning. In the UK it is enough to place you on an urgent two-week cancer pathway to be seen by an ENT specialist.

You should not assume that it is a side effect of rapamycin, Especially given how it’s an ‘uncommon’ side effect. The hoarseness starting with the start of rapa may be purely coincidental.
As far as I’m concerned, Your persistent hoarseness being a side effect of rapamycin is a diagnosis of exclusion, Meaning it should only be reached once other serious possibilities have been excluded.
My post isn’t to scare you. In terms of pure probability, it may well be a side effect of rapamycin or other non-serious causes, But this should only be concluded after you get examined by an ENT specialist.

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#13

Scott Adams was able to cure his spasmodic dysphonia with surgery, and says that many do not know there’s surgery available to do so. Like RFK Jr does apparently not know it.

#14

He likely is aware of the surgery. He’s mentioned Botox in the past. Botox into the vocal cords is generally only administered at select university clinics; usually it’s research hospitals doing these surgeries. Despite that, Botox is the most common treatment. A patient’s local ENT physician generally doesn’t manage treatment for SD. The patient is often first evaluated by their local ENT, and referred for voice therapy for likely muscle tension dysphonia. When voice therapy for MTD fails, the ENT may start to suspect SD and refer them to a specialized voice clinic that generally handles both Botox and surgery referrals.

This comes from Mount Sinai:

“Reported three year success rates [for surgery] range from 50 to 80 percent with these modifications. So surgery, while it can be an excellent form of treatment, is not for every patient.”

#15

It has nothing to do with RAPA per se, and no you do not have spasmodic dysphonia. It is rather a state of being/having a cold that never fully materializes. I had something similar when I started rapa. In my pragmatic mind, I read it to mean that there must have been an internal SOB virus that would rear its head because of the immune suppression by RAPA, but i killed that bastard and I’ll show you how, Ok do this for a full week:
take 3000MG of Vitamin C and 3000mg of L-lysine, once in the morning and once in the afternoon. Your voice will return to completely normal by the third day. If you want to get it faster fixed like second day, you can actually add another dose in the evening. Basically, 9grams of each divided in three doses throughout the day.

p.s. I did take 3000mg’s of Vit C and same Lysine twice yesterday and also twice today, but I did because the weather here decided to go from mid 70’s last week to 40’s these past two days, and every time that happens those flu viruses march in droves lol.

#16

And there’s the problem with the internet.

#17

Can you speak more to your experience with the hoarse voice? What is/was your dosing protocol when you got the hoarse voice and how long did the hoarseness last? How did you decide to take Vitamin C and Lysine?
Your experience could be relevant to others trying higher doses.

#18

I was doing 5pills with GFJ and only when i started RAPA for first couple times.
As for Vitamins C and Lysine, I’ve been doing that in Very high doses of each (6-9 grams of each per day divided in 2-3 times) for last 17 years. It kills the flu/cold virus almost instantaneously. BTW I only take such high dose when is the flu season or if I feel the first signs of the cold. Otherwise, I take 2000MG’s of each 3-4 times per week.

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#19

Thanks for sharing, I recently got a sore throat after taking 2mg rapa with berberine and nuts.

Though “hoarseness” was listed as a less common side effect, there were very related symptoms “loss of voice”, “slurred speech” and “sore throat” listed as more common side effects in the Mayo Clinic list. Hoarseness might just be a more severe manifestation of those symptoms at higher doses.

#20

Wrong, I get ZERO symptoms at higher doses of 10mg plus GFJ and EVOO. Any side effect I ever had was always on lower doses such as 2-5mg’s and weirdly the lower the dose the higher the side effect occurrence. I think i know why but too lazy to explain. In a nutshell though the Mtor inhibition in different part/organs of your body is triggered at different doses. Therefore, you’d have varying effects on low doses as opposed to higher. In other words, in lower doses, you’ll have an imbalance of Mtor in your different organs, thus plenty of side effects. While at high doses all your organs and their mother get their Mtor inhibited (a very healthy and a good thing) thus your body thrives, and you have ZERO side effects.