4juls, 4jul Mon, 01/09/2017 - 14:39 TopicNutrition Advice I wonder what are the supplements to help and which to avoid with PXE? Have any supplements helped any others with symptoms? Blessings to you all and thank you in advance. Comment 9 Follow 25 Like Login or register and click again to Like 1 Comments Login or register to comment on this Idea. have started taking Stacey Mokalis, pxe sufferer Tue, 01/10/2017 - 08:39 have started taking omega3supplements for my eyes.That is after my eye doctor insisted.Have you been on some kind of vegan diet?I Not vegan but I do not eat 4juls, 4jul Wed, 01/11/2017 - 19:27 Not vegan but I do not eat red meat & or any dairy for many years (just personal preference). I take omegas too but worry about them thinning the blood. I hear they are great for eyes and maybe the benefit outways the fact that it can thin the blood? I hope so. Hi Stacey. I was diagnosed 6 Erika, has Pseudoxanthoma elasticum Wed, 01/11/2017 - 15:24 Hi Stacey! I was diagnosed just 6 months ago, and I have seen 3 different ophtalmologists until now. I asked each one of them if I should take any kind of supplement (MacuShield, Ocu-Vite vitamin/mineral pill ...) but everytime I was told that this will not be helpful in my case, as basically (quoting one of the Dr.) "it is a defect". As it seems different for you, it will be great to know further regarding this subject. I've asked my retinologist Mary-Elizabeth Garcia, has Pseudoxanthoma elasticum Wed, 01/11/2017 - 18:19 I've asked my retinologist the same question and the reply was, "Well, it can't hurt." Would like to hear from others if they have asked their eye professionals about supplements. I think early on, I basically 4juls, 4jul Wed, 01/11/2017 - 19:23 I think early on, I basically got he same advise..."It can't hurt", when asking about taking vitamins for my eye such as Ocuvite or whatever there is out there. I do take Omegas in my daily handful of supplements. I hear they are good for eyes but also know they can thin your blood. o are we getting eye bleeding Stacey Mokalis, pxe sufferer Thu, 01/12/2017 - 00:04 o are we getting eye bleeding after 40?How many of us were vegan when we got the bleeding?Let's try and see if there is sth common among us when getting this bleeding.Do any of us have heart problems?How were you diagnosed?I was at 5.i have the classic PXE neck marks Hi once again!I would really Stacey Mokalis, pxe sufferer Sun, 02/05/2017 - 11:32 Hi once again!I would really be interested in finding out if eye bleeding occured while following a vegan diet or whether it occured before following a vegan diet.What I discovered lately was that while i was consuming dairy products i had an iron deficiency. Once i stopped consuming dairy products my blood test showed an improvement .Has anyone had a similar problem?My nutritionist says that too much calcium (because of pxe) might be the reason for my iron deficiency. Hi once again!!!I am so, so Stacey Mokalis, pxe sufferer Fri, 04/28/2017 - 13:59 Hi once again!!!I am so, so excited!!As I have mentioned before I got eye bleeding for the first time last August,Up until then I never paid any attention to my diet though I have always been thin.After the bleeding my eye doctor insisted I change my dietary habits by adding omega3 rich fish , like sardines and salmon at least 3 times a week.I also reduced radically dairy products and i took a vitamin d supplement because my nutritionist insisted it will improve my immune system and he topped that with omega 3 cod oil.Guess what! My eye conditiom ,my right eye which has never had bleeding but was in a bad condition has shown slight improvement!!!!!!Has anyone had a similar improvemnt in their eyes?Could it be due to the omega 3 or vitamin d supplement? ] all PXE people should take Jazztune, has Pseudoxanthoma elasticum Sun, 01/06/2019 - 06:56 all PXE people should take VITAMIN K2 MK7. Must be this version of vitamin k2. This takes calcium from arteries and puts it into the bones where it should be. Also, a new treatment has been discovered and is very effective. Read this: https://tech2.org/netherlands/umc-utrecht-discovers-treatment-for-rare-disease-pxe/ Add new comment Add Your Comment Login or register to comment on this Idea.