Is Valtrex Helpful in Treatment of Acute Zonal Occult Outer Retinopathy?

I was diagnosed AZOOR 7 years ago, and was put on valtrex and zybron eye drops.
I was stable for many years until I had cataract surgery. It has now gotten worse, ie I cannot read unless it is on an I pad or kindle where the fonts can be made large. The words are still blurry, but at least I can see them. I see life through glasses as if they need to be cleaned.
So, after all of this, I am on Cellcept, for autoimmune. This is scary, but we do what we can to see.
Has any out there been on cellcept? How has your experience been? How about steroid shots into the eye

I love to sew, and just bought a Brother Dream machine so I can see. I will love it. I can see all the stitches.
Any other suggestions out there?
Thank you. Barbara

I was diagnosed with Azoor 15 years ago in my left eye and lost all of my peripheral vision within 4 yrs. I would have central vision except for the mountain of inflammation behind my retina. After 11 years I started having double vision which got me back to the doctor and last year Azoor showed up in my right eye. On a desperate search to find a treatment I traveled to a research dr in Iowa and he offered valtrex as a treatment option. High dose valtrex and I have not missed a day since I started taking it. My right eye has not gotten any worse and I ramp up & down on my dose based on symptoms. I have also linked my symptoms ( pain, flashes of light etc) to hormones & stress. The 1-2 weeks following my cycle my symptoms are minimal so I take a low dose valtrex. Starting week 3 I increase dose. My doctor has allowed me to take meds as I feel I need to. I also did research of foods to avoid and foods to eat if you have herpes virus. I have had chicken pox before and fever blisters on ocassion. I have found a big link in diet also. I think that if you take valtrex as soon as possible it can stop disease from progressing but it has not restored my loss in my left eye. I try to avoid stress and minimize the multi tasking. ( I have 3 kids under 9 so this has its on challenges but I am surprised how much more calm I am. Stress triggers virus. Chocolate & alcohol trigger virus. Eating foods high in lysine and low in arsine (sp?) also limit virus from activating. I am in the medical field and after no help or direction I have done the best I could at connecting the dots and do everything I my power with the help of God to stop this terrible disease.
My experience is that valtrex taken in a high dose helped stop the progress, eating a diet of foods that help surpress diet and limiting triggers have saved my vision thus far!

Thank you so much for conversing with me. I really appreciate your time and expertise.

I agree about their reputation and I feel lucky to live nearby, but… They maintain that no one knows what causes AZOOR and there is no treatment. Clearly not true. You know of people valtrex has helped. I also read a study from Barcelona that details candida famata as the culprit in some cases. I also have some vascular issues where my vessels are beading and leaking a but and don’t stretch all the way to the periphery and they are unsure if that presentation when coupled with AZOOR sxs. I have found in life that as good as professionals are, no one person knows everything and you have to be active in your own care. I would like to prevent additional vision loss. I know I have HSV I and II and CMV with a flare coinciding with the exacerbation of AZOOR sxs. To me valtrex seems worth a shot. We’ll see what they say Tues- but I’d love someone who would entertain the possibility that it could be treated.

Thank you. I go back to Mass Eye and Ear next week, but they are under the impression that the etiology is unknown and there is no treatment. So far I have my original blind spot. But I have symptoms in a different area and some starting in the other eye and I’m hoping to prevent more damage. Interestingly symptoms did coincide more or less with a herpes outbreak. Where could I go to find an MD who knows? I’m willing to travel. Thank you

I was stable for 13 years. It has recently begun to spread. Would valtrex help? I have it here for oral herpes. What is the dose and for how long did treatment last?

valtrex is the only treatment i am aware of.

im afraid vision cannot be restored after azoor has taken its toll–it causes too much damage and scarring. i think the best we can do is limit the damage.