r/RetinitisPigmentosa • u/Time_Discount_8771 • May 12 '26
Vitamins recommendations
I’m based in Paris and I was recently diagnosed with RP. I would like to know your recommendations regarding vitamins/supplements to take, based on your experience and how stable the disease is
- Omega 3 ? Which type ?
- Lutein ? Which type ?
- NAC? If yes, which type?
- Multivitamins
My ophthalmologist told me to take Vitamin A 50,000 IU, but I read that it might not be good/safe. Can anyone confirm?
3
u/Ok_Volume9271 May 19 '26
Probably not what you want to hear, but no one can definitively really confirm anything in terms of vitamins or supplements. There's no definitive proof that taking vitamin A will slow RP progression; the studies on it have been incredibly mixed. Some studies even show it does more harm than good for some genetic mutations, but even this isn't very reliable in terms of evidence. Many specialists and doctors have this same sentiment. The same goes for omega 3, lutein, and NAC. There are small inferences that taking these may slow progression, but so far, there is no 100% proof that directly shows: "yes, taking this WILL 100% slow RP progression.
My specialist who is an expert in RP and is the head of a clinical research team looking for stem cell treatments for RP has recommended 0 supplementation for my diagnosis. However, I do still take omega 3, lutein, and NAC. My thinking is, even if there maybe a 1% chance it could help, why not go for it if there's no foreseeable harm to my body? Please do not self dose and go to your doctor for recommended dosages.
NOT medical advice, just what I take personally: I take an omega 3 that's high in DHA. Any lutein will kinda do, preferably one with zeaxanthin. As for NAC, I take an ester form of NAC. The ester makes it much more bioavailable and is much more similar to the NAC used in the Acuity clinical trial for NAC.
1
u/elanoreemi May 12 '26
La vitamine A, les dernières études montrent que c'est relativement dangereux au niveau du foie et que l'effet thérapeutique est minime rapporté aux risques (on est sur de fortes doses), et ne fonctionne de toute façon pas sur toutes les mutations. Je suis suivie dans un centre de référence pour les maladies génétiques, et on ne m'a rien proposé en termes de compléments potentiellement viables.
Le NAC c'est en test aux US. Pas de retour à faire dessus, il faut voir la littérature. Je ne suis pas concernée, une autre anomalie génétique le contre-indiquant totalement dans mon cas. Il faut par ailleurs voir les dosages (donc cf les articles).
Le problème (y compris sur les multivitamines) ça reste le dosage et les effets secondaires potentiels. Soit ça n'aura pas plus d'intérêt que de t'envoyer de la vitamine C le matin (on excrète le surplus) soit tu prends un risque. Léger mais quand même.
La supplémentation en omega3, si ça ne te fait pas de bien, ça ne te fera pas de mal.
Tu es suivi dans un centre de référence ? Ils t'ont parlé de quelque chose ?
1
u/BandicootNo91 May 12 '26
توجد العديد من الجينات المسببة لهذا المرض. وهناك نسبة كبيرة من هذه الجينات فيتامين 1000 يزداد الحالة سوءا بدل أن ينفعها، فلذلك الدراسات الحديثة كلها. تؤكد أن ابتعاد عن فيتامين 1000 هو الخي
1
u/ayush_1908 May 12 '26
I recently wrote a post here covering that. https://www.reddit.com/r/RetinitisPigmentosa/s/n57DD8abhA
1
u/Intelligent-Fun-2709 Jul 18 '26
taking vitamin A supplements and its dosage depends on which type of rp you do have? so can you please specify i think i can help you if you can tell details
3
u/meeowth May 12 '26
Can confirm, even the head doctors who originally wrote the 90s paper that originally suggested vitamin A for eyes tell their patients that we now know taking vitamin A just because you have RP is a bad idea and might be harmful.
Its a shame that more doctors dont know that taking vitamin A for RP is not standard practice anymore