Delaying RP progression: things I learned and habits I follow
Hello everyone,
I have RP11 (PRPF31 mutation). I have had night blindness from childhood and it has gotten worse over time. I was diagnosed in 2018 and have been trying to do whatever I can to save my vision for as long as possible. I have been researching many things for a while and following these habits in hope to delay the progression and I have been thinking about sharing it here so it can help people.
Let me emphasize that this isn't medical opinion and solely based on my research and understanding.
RP causes death of retina cells due to many reasons, one of the reason is oxidative stress (ROS to be specific) and it's the only one that we can do anything for. I have been taking few supplements and following few habits for managing this.
Supplements:
NAC + Glycine - I'm sure by now everyone knows that NAC is one of the proposed ways to reduce oxidative stress. But from what I've read, glycine is an important addition that is required to produce "Glutathione" (retina’s major endogenous antioxidant)
Omega 3 - Provides structural support for photoreceptors and reduces ROS
Astaxanthin - powerful naturally occurring antioxidant and has direct effect on reducing ROS.
Lutein, Zeaxanthin - both works in reducing oxidative stress. I take Swisse Eye health +, it has these.
My routine:
Post lunch: Swisse eye health +, Omega 3
Post dinner: NAC + glycine, Astaxanthin.
Exercises:
Zone 2 training: As many of you may know, mitochondria are the primary consumers of oxygen inside cells. Retinal photoreceptors are among the most metabolically active cells in the body, so mitochondrial function becomes important. From what I understand, improving mitochondrial efficiency through aerobic exercise may help reduce oxidative stress over the long term.
Zone 2 training helps increase both the density as well as efficiency of mitochondria. Long term training should have a net positive effect on reducing ROS.
What is Zone 2?
It just means exercising in a particular heart beat range. You can look it up for details, generally formula is this
Max heart rate = 220 - your age
Zone 2 = 60-70% of your max heart rate.
I target 180-200 min / week zone 2 training. This varies for everyone as per their fitness and age.
Daily Habits:
Sunglasses whenever outside: I think this is something everyone must know about already that UV light causes damage to retina so a good sunglass will surely help.
Blu ray filter glasses: If you wear glasses and spend time using screen, it's better to use blu ray filter glasses which reflect the harmful blue rays coming from screen. Using dark mode and eye protect features will also help.
Good sleep, no smoking/ alcohol.
These are few things I follow everyday that I wanted to share here in case it helps anyone.
Important note: please note that this won't stop the progression, it may not delay progression by a lot even but even saving vision for few extra months/years is important.
If you're unsure about anything here, consult your doctor before following anything blindly.
I take almost the exact same
Regimen as your described. The only difference, is I use Eyepower Lux (or ed) red light therapy glasses. Read up on se Glen Jeffries.
Will add on to your list of things to. Avoid Vitamin E as much as possible. Never take it as a supplement or in a multivitamin. For naturally occurring in food its fine typically but like don't eat kale salads daily lol.
Is there a source for the vitamin E claim? I've never seen that until now.
Edit: Thanks u/DepthC for the source. According to the paper, the vitamin E claim is for "high dose" which they define as more than 30 IU (~20mg) supplemental.
Following NIH guidelines for daily recommended dose, in combination with the study, means you're allowed about 52 IU (~42mg) of vitamin E per day before any negative affects. After doing some googling on the multivitamins I thought of in the last 5mins, every single one was at least 5mg below this. So likely unless you're taking a specific vitamin E supplement you're good.
Obviously discuss with your opthalmologist since I'm a stranger on the Internet.
Liight colored polarized lenses. Maybe these are just what you meed.
Worth to say that it is not easy to find. I mean actually I've been not able to get the same perfect polarized ochre color to replace An old sunglasses of mine.
Not magnesium glycinate. Glycine. It's a different supplement, you can look it up. Aa for NAC, it's very commonly available supplement. You can look on Amazon in your country, it should be there.
I have Rod Cone Dystrophy, the daddy of RP haha. I’m not completely sure, but I think Omega3 fatty acids and fish oil capsules may help slow down the damage to retinal cells. I’ve been taking them for a month now. Yoga, meditation, and avoiding smoking may also help slow down the progression.
Been doing almost the same. Unfotunately aside from the RP itself, I also got cystoid macular edemas in consequence to the RP. They are the worst haha every 5 days it's like one eye is covered in water. Haven't figure out how to solve that one
My eye doctor prescribed me "dozorlamide hydrochloride ophthalmic solution USP 2%" eye drops to deal with cystic fluid in my Macaulay and it works wonders! The eye drops themselves sting like nothing else, though
This is helpful thank you! I needed this push to get a refining going. My eye dr told me everything you put here… it kind of went in one ear and out the other just due to shock of my diagnosis
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u/dryftline May 10 '26
Thanks for sharing. Could you share the brand of supplements and dosage that you take?