Please help - confused about treatment (herpes uveitis)

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sew

Please help - confused about treatment (herpes uveitis)

Post by sew »

Hi,
I have recently experienced my first bout of uveitis. I'm 28 years old and have a history of herpes keratitis (first and only bout at 8 yrs of age). I was pregnant at the time of been diagnosed with uveitis and told the cause was unknown. I pleaded with the doctors to prescribe anti-viral ointment, but they refused. I understand the difference between uveitis and keratitis but I figured it couldn't hurt to have the anti-viral anyway. My "gut" instinct was that the cause was the herpes virus and it seemed logical to me to try to control the cause of the inflammation, not just the symptoms. Anyway, I was put on steroid drops (FML) but because the inflammation was progressively getting worse, the strength was increased (I ended up on hourly pred forte drops). It was then discovered that herpes was the actual cause of my iritis/uveitis. I was given anti-viral ointment to use with the tapering pred forte. This seemed to keep the inflammation in-check but didn't solve it completely. I was then given valacylovir oral tablets (500mgs twice daily) to use with the ointment and still slowly tapering the strength/dosage of the steroids. 2 weeks later the inflammation had significantly reduced, then 4 weeks later it had completely cleared! I have been left with a permanently dilated pupil which is very sensitive to light.

My question is; my doctor is insistant that anti-viral therapy is not "standard" for herpes uveitis and that it was just co-incidence that it cleared after being put on the oral treatment. This doesn't seem logical to me, but it that correct?

Also, I'm terrified that this will flare-up in future and could be refused anti-viral treatment again. What should I do?
Any comments would be greatly appreciated.
Thank you.
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Post by Mike Bartolatz »

Your gut feelings are CORRECT. Valacyclovir orally as a preventative IS the current course of treatment for herpes Sx related uveitis. without this the next uveitis attack could be located posteriorly which can lead to Acute Retinal Necrosis (bad stuff/blinding)

please read about herpetic uveitis at emedicine.com as well as at http://www.uveitis.org

somewhere I have a link to herpetic uveitis in one of the forums here. print it out and give it to your uneducated opthalmolgist.
your primary care physician should be able to prescribe the Valtrex for you. provide him/her with the article. then find a MODERN thinking uveitis specialist to monitor your eyes and treat in the future

mike
Mike Bartolatz
Moderator
sew

Post by sew »

Thank you so much Mike! I thought I was going crazy with my instincts!! I feel extremely relieved that I stumbled across this forum of very knowledgable people, like yourself. I will check out those websites/info and find an appropriate doctor who will prescribe valtrex for me.
Thank you again for your wisdom and direction.
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Post by Mike Bartolatz »

Our Specialist list developed at the Ocular Immunolgy and Uveitis Foundation at http://www.uveitis.org has competent uveitis specialist. some on the list only have an INTEREST not fellowship level training so I ask members to tell me where they live and i will provide a name of the BEST specialist in their neck of the Woods. usually people must travel to see a TRUE specialist (retina specialists are NOT uveitis specialists. they are surgeons first and don't take the time required to adequately treat uveitis using MODERN methods.

Take Care,
mike
Mike Bartolatz
Moderator
sew

Post by sew »

Hi Mike,
I logged onto the uveitis.org website and actually asked that exact question.....a specialist near me? I'm in Australia and Dr. Foster recommended Dr Peter McCluskey from the specialist list. I'm yet to contact him since he's interstate from me, but it's good to know there is someone in this country who could possibly help me.
Thanks.
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Post by Mike Bartolatz »

Hopefully this specialist will be able to help. they are few and far between and this is the ONLY specialist I have heard of recommended by Dr Foster there in Australia in the Six years I have been moderating this site.
please move forward with a consult to this Doctor. Herpes related uveitis can blind quickly if it attacks the posterior section of the eye leading to Acute Retinal Necrosis = blindness.

as long as the herpes drug is held at bay by the antiviral drugs you should be ok.

God Bless,
Mike
Mike Bartolatz
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