PXE International promotes research that is driven by, and centered on, people affected by PXE. PXE LAB is a forum for PXEers and researchers to brainstorm, collaborate, and develop a research study on nutrition and exercise.

PXE Diet

Alex's picture


Because I'm more at risk for heart problems I am following a vegan diet with occasional fish. My cholesterol and all my other numbers ar great.



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Stacey Mokalis's picture


have reduced dairy products and I have increased my intake of sardines salmon and small fish in general.I feel much better.Has anyone tried increased intake of zink??

Elizabeth Terry's picture

Anyone else vegan or vegetarian? I'm thinking about it as well. What have you experienced are the benefits? Anything specific to PXE?

Stacey Mokalis's picture

i once again.I'm neither vegan nor vegetarian.I just tried not eating that many dairy products and I noticed an improvement to my arm which had quite a bit of red bumps.They turned light pinkish and I also increased my intake of magnesium.I eat avocado and tomatoes dry figs and so on.H


animal's picture

Hi Ellizabeth, I am 41, an ex smoker and was overweight! Not a good combination for someone with PXE (as we know).

I had two courses of injections in my left eye and one course in my right eye (here in NZ, they stop the injections after a course to see if it has worked).

I actually saw a comment on the PXE discussion board from someone saying they had gone vegan and it had worked wonders for them. I decided for my health (ethical reasons etc etc) to try it. Since I have became vegan, I have lost eight kilos, feel better than I ever have (this heappened within two weeks) and I started jogging about five months after I went vegan. This stopped my leg cramps too!. I have never had the need for an injection since. 

I would highly recommend it to anyone - what do we have to lose? :-)

Alex's picture

I've been mostly vegan for about five years.  I don't want to get another scan so I'm just assuming that since my LDL is 78 and my HDL is 93 at last count that I'm doing well.  I also didn't want to go on statins and now I don't have to.  It's easy except for social situations and traveling. Eating fish makes it easier but I'm a stickler for sustainable fish and no farm raised salmon.  I just try to tell people I'm happy with a serving of vegetables or salad.  If I know it will be a problem ahead of time I eat some protein at home before I go.  Eating fish makes it easier when we travel.  If you order vegetable soup in germany it will have ham in it so I just get fish!   When I waw in Grece in early spring, vegetables were scarce so I ate some of their wonderful cheese for a week and tested my cholesterol when I got home at CVS minute clinic.  Yes, my cholesterol went up.  Not a lot but enough to realize I shouldn't do that.   I think I've really lost the taste for meat now.  I still enjoy cooking it for other people.  While it's hard to know what's going on inside, I think my skin looks better because of the diet.  Happy to answer any questions.

Anne's picture

I eat a vegan diet and have not noticed anything different.  I have had eye bleeds in my left eye and eye shots every 4 months for over 6 years, after I lost my centeral vision in my left eye anyway I now only get shots if there is an active bleed.   So I am trying to help myself with a healthy and whole plant based diet. If for nothing else it does make me feel less sluggish, gives me more energy, and wow if you need to drop the pounds and keep them off it is the way to go.  You want to learn all you can about the foods to eat and to be sure to eat a healhty whole food based vegan diet and avoid the "proessed junky" vegan foods out there.  It is very important to do your homework before begining to eat vegan and it's fun and the dishes you can create are fantastic, the variety is endless.  


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