Hello from a Stevens Johnson dry eye sufferer.

[dryeyedave]

I was a healthy 42 year old man with no health problems when I suffered a drug reaction to a z-pac and developed erythema multiforme, a milder form of Stevens Johnson (in that I only had mouth, nose and eye involvement). Despite the fact I was told my case was mild I was functionally blind for one month. I underwent daily removal of pseudo-membranes in both eyes. I also was treated with a PROKERA ring in my left eye which was ineffective so an amniotic membrane graft was installed in my left eye.

6 months after all this started recovery has been slow and I think it is still moving in a positive direction. I have no corneal scaring and my vision is the same in the right eye as it was before all of this started. The vision in my left eye is a little worse but mainly due to sever dry eye. My right eye is close to normal and the dryness is only mild but my left is much worse. Both of my upper lids are scared but my left is worse than my right. I do not have any lid deformities or dysfunction as most SJS suffers have.

Anyway I have been a lurker for a while and have learned much good information. I have been very aggressive in my treatment an I want to share what I have learned in hopes that it will help others who come here but I will post this probably in the success story section. Please forgive me in advance I have strong opinions and I am not particularly fond of MDs since it is an incompetent GP and ER doc that put me in this state by unnecessarily proscribing a z-pac and in not recognizing a drug reaction that if caught earlier probably would not have progressed to the level it did--but that is water under the bridge. I am not here to shill a doc or product so my reviews will be based on my experience and my opinion.

I pray for everyone here daily.

David

[littlemermaid]

Excellent, David. You will be a fine contributor and help many people with your experience. All my daughter's problems are iatrogenic from drug reactions but she still likes docs more than I do and is working towards being one... It's a strange world we live in ~ we all do what we can. We pray for you too. What is your vision like now - it's wonderful your right eye is near normal? Do you mind saying what your skin is like and how you are treating it?

[dryeyedave]

My vision in my right eye is 20/15 my left is 20/40 to 20/20 depending on how dry it is. If I take my 7eye glasses off and let my left eye dry out it will deteriorate to 20/40 or less so my vision would be normal in my left eye if my tear break up was normal. My right eye vision does not change even without my glasses it is between 20/15 to 20/20 even late at night(thanks to Restasis).

My exterior skin was not effected only the skin on the inside of my mouth, lips, inside of my nose and my eyes and inside of my eye lids. The skin inside my mouth came off in sheets and I developed scabs all around the inside of my nose. I lost all of the epithelium over both corneas. My mouth healed completely with no scarring according to my dentist. I do notice some adhesion inside my mouth that I did not have before but my mouth is no dryer and it is otherwise normal. My nose seems normal. I don't understand why my mouth can fully recover and my eyes lids did not especially since my mouth was really far worse during the acute phase and the epithelium on the inside of the mouth is similar to the inside of the eye lid.

[littlemermaid]

I guess the structure round the eyes is more delicate and specialised and you are healing gently from the interventions. Have you got pain now? Do you still need oral meds?

[dryeyedave]

I am not in any pain so I don't need pain medication. My eyes are annoying but not painful.