Is Valtrex Helpful in Treatment of Acute Zonal Occult Outer Retinopathy?
October 23, 2010
A small study in AJO demonstrated a nice response to Valtrex in these AZOOR patients. This suggests that the Herpes virus is indeed the culprit. Although AZOOR is rare, a larger, prospective study might be nice.
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36 Responses to “Is Valtrex Helpful in Treatment of Acute Zonal Occult Outer Retinopathy?”
Dr. Ari,
My local university neuro ophthalmologist has agreed to see me for followups. I don’t have to travel to Iowa! Things are looking up.
Best regards,
Cynthia Smith
I want to add that if you are going to try to be seen and decide to fly to Iowa, buy trip insurance. My appointment was changed several times. (8-1, 8-8, 8-15, then 9-1)
Cynthia
Back to the flashes–They are now more of a colorful tap-tap-tap. Not the bam-pow of that dark with blue or sometimes orange/red/green/yellow/purple sledgehammer gonging your eyes. I don’t think the doctors really understand that.
Valacyclovir is a help, not a cure. I am OK with that. You have to decide what is right for you.
Cynthia
And, for the record… As I have aged, my genital herpes outbreaks (1970’s) had decreased in frequency. I hadn’t been on any kind of medication for it for years. I noticed increased outbreaks with the AZOOR, but I didn’t put 2 and 2 together until reading this report.
Yours,
Cynthia
Dr. Ari,
I forgot to add that my strength has also recovered with using the valacyclovir. AZOOR fatigues you and tires you out. I am back to my pre-AZOOR stamina.
I still have day and night flashes that come and go, but they are weaker.
Cynthia
Dr. Ari,
I began valacyclovir in April of this year in response to repeated genital herpes outbreaks. I noticed an immediate improvement in my AZOOR symptoms. The improvement was not a coincidence. My AZOOR flashes were getting worse at that time and I thought I might be beginning the attack phase again. I understand that the clinical evidence of improved visual acuity is thin supporting evidence.
Best regards,
Cynthia
Oh, the improvement I see with occult early AZOOR is improved light tolerance. I used to have to sit at my kitchen table with a cap on because the light was harsh. Not any more. I used to change my light bulbs out around the hose regularly because of the glare; not anymore. My night vision is better and the flashing is reduced. It is a start. I go along waiting and hoping for my next herpes outbreak.
Best,
Cynthia
Dr. Ari and friends,
Husband and I got back form Iowa tonight. Today was my big day at the U of Iowa. I was gone over with a fine toothed comb. All of the latest equipment was applied. I didn’t have to see pink as long with their test! I am still lousy at the visual field. This one had what looks like a big washer for a bolt that you tap on a table. Well, the light snakes around in the first test and when you blink you cannot tell if it is two light times or one. But, I got used to it and did better with the other eye. etc etc.
I have much info to digest and I shared info and exchanged ideas with Dr. Sohn, who has more experience with AZOOR you can see rather than occult AZOOR. (However, I have mild (early) rpe changes with my AZOOR eye).
He emailed my internist because I have herpes and I use valacyclovir when I have outbreaks. I don’t know what he said. I can tell you that I see improvement when I take valacyclovir with my herpes. I wish I had a higher dose for a longer time, but Dr. Sohn did not supply his own prescription. I guess this is all I get.
Be encouraged by my experience. One of us is bound to break through. I hope one of you is inspired by this and tries again.
Best regards,
Cynthia
I forgot to mention that I had to supply my vision fields since my AZOOR began, which my regular ophthalmologist easily faxed over. I also had to have a CD made of my 2014 OCT and then used FEDEX to send that. They didn’t ask for my MRI. I don’t know what tests will be done; just the usual 3-4 hour window the doctor gives himself.
Dr. Ari,
My experience thus far at the U of Iowa is hard to summarize. Connecting with Dr. Mahajan and Dr. Stone was an important thing for me to do. Not all of the staff has heard of AZOOR. And, I arrived at their doorstep without a direct referral from another doctor. I referred myself. I introduced myself to Dr. Mahajan via email and as things went along I dealt with Dr. Stone’s nurse. The 2 doctors picked the doctor I am about to see.
I was determined, polite, and clear about my reason for going there. I want the valacyclovir. I read the 2 doctor’s report and understand the experimental nature for ophthalmology. I referred to the report often.
Cynthia
Dr.Ari,
Thank you again for being heard. I hope that I am a good patient. I know that ophthalmologists are not experts in autoimmunity or virology. When you have AZOOR, you are scared because of the visuals and how you feel. The visuals are as Dr. Gass, et all described. (Bubbles, Bursts etc.) I would crawl to Iowa for relief. My husband and I are driving…5-6 hours one way. We have a hotel near the U of Iowa.
Best,
Cynthia
Dr. Ari,
I have read that a virus is capable of fooling cells into autoimmune reactions. So, it is a fact that a virus can do that and more.
I understand that ophthalmologists are not all up on the latest viral studies and are not virologists. Therefore, that very important point is missed.
Cynthia
Dr.Ari,
I am the same Cynthia Smith from April 18, 2016 and August 5, 2016. I want to thank you for this website. You care about us and less about yourself. I am old and have seen many things in my life. I continue reading about AZOOR and the AZOOR (AZOR) constellation. I think it is important to know where one is in relation to its many facets. Most doctors don’t know what they are doing. It is sad.
Cynthia
Dr. Ari,
To make a long story short, I was unable to see either Dr. Mahajan or Dr. Stone at the University of Iowa because they are doing research until about February of 2017. I was assigned Dr. Sohn and will see him in September. I will let you know how things go.
Best regards,
Cynthia
I have been diagnosed with AZOOR, and losing my periphery very rapidly. Im praying it doesn’t move to my center vision. Ive understood that its unlikely. Have you ever known anyone to lose complete vision with AZOOR? I see Dr Lee Jampole at Northwestern Eye Center in Chicago who diagnosed me right away. Is Valtrex a type of immunosuppressant?
I have spent hundreds of hours reading about AZOOR and would like to find someone as knowledgable t talk to. I am not a doctor, so all of the test jargon is beyond me. I do understand the syndrome. When I ask questions I am pooh-poohed as being a worrier because I am in one eye and still occult. In my most recent conversation I was told only to come back when he can see something. He obviously is unfamiliar with Gass’ number 13. Needless to say after that and his refusal to consider valacycliver for me – even later on- I will be finding a new doctor. Comments, Dr Ari? I have had AZOOR since Jan.2014. I have chronic photopsia and am aged 63.
