PKU drug trials - Side effects (Phenylketonuria)
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- เผยแพร่เมื่อ 5 ก.ย. 2024
- In this video I describe my first week on a PKU drug I had never taken before (Sapropterin/Kuvan).
I share my experiences and how I felt while starting the drug/trial and explain why everyone should be mindful of these feelings, especially if you respond very well to the drug or another type of PHE-related PKU medication.
I'm also joined by another fellow PKU adult from Australia who shared their experience of starting PKU drugs aimed at reducing PHE levels. We hope these drugs not only reduce our PHE levels but also give us the extra margin in our protein tolerance level to increase our overall protein from food.
Luckily, that was the experience for me and I'm very thankful.
Thank you to bianca.pku.life (Instagram) for being in this TH-cam video and sharing her experience. If you haven't followed Bianca's Instagram page go check it out. She is an inspirational PKU woman who has achieved so much in her life, she is so helpful and a valued member of the PKU community.
Follow me below Instagram: @Richard_fitpku TH-cam: @Richard_fitpku
#phenylketonuria #pku #kuvan #Sapropterin #raredisease #disease #metabolicconditions
Hi Richard! My son has Pku as well, he is now 11 months old. I just wanted to thank you very very much for doing this. Seeing you gives me the strenght I need for my son.
Awww thank you for your kind words ❤❤
Great one yet again, Richard! Such an important discussion…
Thank you 😊👍
Hey Richard! :)
I started Kuvan in October 2023. My tolerance was originally 8 grams and I’m currently up to 55 grams of protein, and still raising as my phe levels are still coming back in the low 100s. I was lucky to not have any side effects, but on day 4-5 I definitely understand what you mean by having that sense of clarity you’ve never had before.
Also this is slightly odd but at some point in my early 20s I completely stopped dreaming, I didn’t really think much of it then but since Kuvan I have started having dreams every night again, and I can’t help but think that’s linked to my low phe levels again.
I'm sitting around 300 ish at the moment, lower would be better that's for sure. I've never heard anything before about dreaming. It just shows how unique we are and how different it can be for all of us.
Richard, thank you so much for making this video and talking so concisely about your journey on the trial.
It’s so good to hear how after you rode that wave it’s now such a positive affect on your quality of your life ❤
No problem at all, thank you for watching 😊
Hi Richard. My 3 mo old son has Classic PKU. Your story and experience are inspiring, thanks for sharing. We are from Uzbekistan, the government provides with formula, and now our geneticists are trying to buy Sapropterin (or generics) and test them. God grant they manage to realize their plans.🤲
Was it easy to agree to testing the drug, because the tablets are still relatively new and have not been tested for decades?
Although I don’t have PKU, I still feel like I’m living it 😅
Thank you for your kind words. I'm glad to hear your government provides formula. I hope you are able to access sapropterin soon. The drug is the unbranded version of kuvan and that drug has been around for 10 years ish. The UK only just had access to it a year or 2 ago though. I'm very happy on it and feel so grateful that I have access to them too.
I have hyper phe and I'm on kuvan. So lucky I've be able to stop taking all formula and have completely free full protein diet due to Kuvan.
That's amazing 😊😊😊😊
My 7 Year old little girl takes this and it has doubled her protien intake. The first week of her taking it she was waking up in the night constantly and staying awake. Things have settled and we don't have any side effects now.😊
She has 7 tablets every morning after breakfast mixed with apple juice.
If people are able to double protein allowance that's such a huge positive isn't it ❤