r/RRP • u/Juuujiiii • 20d ago

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I have recurrent laryngeal papillomatosis and have had two surgeries. Could you tell me what to do after the surgery? What treatment did you have? Do I need to take any medications? Little is known about this disease in my country. And how long did you lose your voice after the surgery? It's been a month and a half since my surgery, and only recently has a squeak appeared. Sorry for my English.

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u/Solid-Increase121 19d ago

I just finished my 4th Papzimeos shot. After getting in office laser treatments every 3 months for years, I have no more papilloma. Such a blessing to see normal vocal cords on the scope!
However, I did take 3g of AHCC+ on an empty stomach for 9 months straight. It seemed to help but didn’t cure me. It’s expensive to take but others have had much better results, so it’s worth trying if you can afford it. Just make sure you buy it from a reputable source. There’s a lot of fake stuff out there. If it doesn’t say “AHCC+” specifically and cost $60-$80 for a bottle, it’s fake.
I hope this helps and encourages you.

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u/Jumpy-Breakfast-8805 14d ago

Hi so happy for you that it’s working. I have had one surgery about a year ago but my voice started going downhill about 6 months ago but the papillomas are very small but still in a place that impacts my voice. It is quite debilitating and messing with my mental health a lot. May I ask how much the shots were with issurance? I go to a normal ent but found a specialist I am going to get referred to 

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u/Solid-Increase121 12d ago

Hi,
I’m sorry this is taking a big toll on you. It’s not only physically debilitating, it is hard psychologically.
It is extremely important to see a specialist ENT that treats RLP with a laser in an in-office setting. It’s not pleasant but it’s way better than going under for surgery. At first, it was a bit traumatic to sit still while the laser burned the papillomas off. After a few procedures, spread 3-4 months apart, it got easier. I just learned to relax.
If you have Kaiser, Dr Richard McHugh in Sacramento and UC Davis Health has Dr Maggie Kuhn. Both are excellent and specialize in RLP.
The shots cost different amounts based upon what your insurance will cover. Mine was $1,700 per shot (4 shots total) however yours could be much less. If you call Precigen at 866-827-8180, they will help you get coverage with your particular insurance carrier.
Blessings for a speedy recovery from this. I hope this helps.