Cause: Toxic Epidermal Necrolysis

[PhoenixEyes]

Hello all, I've found reading this forum very helpful and wanted to join. Any insights / thoughts welcome.

I suffered Toxic Epidermal Necrolysis, a severe form of Steven-Johnsons Syndrome. Before this I had zero problems with my eyes, now they're painful and blurry every day.

Most recently I got lower punctal plugs and may be offered uppers/cautery. An amniotic contact lens was mentioned but it depends on how I get on with the plugs.

[Hokucat]

So sorry to hear what you have been going through. Have your doctors mentioned autologous serum tears to help give your eyes the nutrients it needs to heal? These are eye drops made from your blood plasma, which has much the same properties as your natural tears which nourish and protect your eyes.

Also, I've read scleral lenses are very successful helping SJS/TENS patients. I wear mines at least 12 hours a day to help me with dry eyes likely from Sjogrens Symdrome (autoimmune disease), and I could not have the comfort and function as well as I do now without them. Here is a link to the Boston PROSE scleral lenses that gives a good overview of the lenses, and as it relates to SJS/TENS:

http://www.bostonsight.org/PROSE/PRO...hnson-Syndrome

Lastly, I really believe healing from the inside out is important. I used to have severe dry "sandpaper surface" eyes with zero Schimer and TBUT scores, and with thick meibum oil and blocked meibomian glands. But after making changes to my diet, I'm so much better. For me the key was drinking fresh lemon juice in green tea twice daily...this seemed to give my immune system what it needed and help my glands properly function, to finally overcome my condition. Below is study on the powerful effects of lemon/tea, and how it helped me after several years of suffering. For you, the diet changes and/or treatments that work may be something else, but you will get better too once you find what you need.

http://www.purdue.edu/uns/x/2007b/07...rruzziTea.html

http://www.dryeyezone.com/talk/forum...evere-dry-eyes

[PhoenixEyes]

Hokucat, thanks for your reply.

Autologous serum drops and scleral lenses haven't been mentioned yet but I have read about these on the forums here, it seems tough to get on the NHS but I'm noting it down if everything else fails. Having never been a contact lens wearer before I dunno how comfortable I'll be and I kinda hope I won't have to have lifelong contacts, but then I was also nervous of dropping stuff in my eyes and am now way past that.

I actually looked into green tea before for another issue I had in the past, I remember reading that the theanine in it has an antioxidant and nerve calming effect, you can also get it as a supplement. There's a lot of research done on l-theanine and I heard great things from people. Unfortunately it didn't have a noticeable effect for me in the past but I could always try again in the future. I am currently taking vitamin C on the advice of an eye doctor.

I have actually changed my diet a bit after the necrolysis to add more greens and such to try and help my skin.

[Hokucat]

You're very welcome! FYI, when I drank green tea without the lemon juice, I did not see any noticeable improvement to my health either. But with the lemon/green tea combo, that's what worked for me, and seems to be supported by the Purdue study.

That's great you are adding more greens to your diet to help your skin condition. Prior to my eyes getting really dry, the skin all over my body, arms, legs, face, and lips got severely dry, cracked, and scaley. This was resolved by drinking freshly juiced vegetables 2-3 times a day for a few months (chard, collard greens, red and green kale, parsley, beets and beet greens, cucumber, carrots, butternut squash, and apples). From what I've read, juicing vs eating veggies yields many times more of the nutrients needed to get and stay well, as one would need to eat a huge amount of vegetables to get the same amount of nutrients. But eating them does give the fiber juicing does not, so it's all good. Anyways, I still juice once a day, as well as eat lots of greens, and limit sugar, gluten, and dairy. This, along with the lemon/tea has gotten my overall health to the best it has been in many years.

Good luck to you finding what works for you. You're on the right track being on this forum and asking questions!

[PhoenixEyes]

That's great news about your dry skin. I've had a dry skin condition called eczema since birth so I know it can be painful. After 2 decades trying Dermol Lotion finally gave relief!