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TSPK In VT

Hi, I'm in my fifties and have had TSPK for a couple of years. My doctor (Doctor A)  initially prescribed steroids which helped wonderfully. Then I developed glaucoma; I don't know if the two are related, but it worries me. Anyway, he put me on Timolol and Restasis, and sent me to Doctor B, a glaucoma specialist 

Things were fine for a while, but when I developed some light sensitivity, Doctor B took me off both meds to "see what would happen." My photophobia got worse. So now I'm back on Restasis, but the light sensitivity has not gone away. It's very difficult to drive or do things outdoors, which is quite difficult, because I'm a very active person.

Soft contacts seem to help, but in a strange about face, Doctor A now says that this might not be a good idea. All the literature I've looked at says otherwise. Anyone have any comment on this? They really make me feel better, so I'm reluctant to give them up.

I'm thinking about going to Boston for another opinion. Anyone have any ideas about 1) what to do about the light sensitivity; or 2) who I should see in Boston? and 3) wearing contacts?

Thanks!

Neshkah
Neshkah Neshkah 56-60, F 2 Responses Apr 13, 2012

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Hello ! -

My son age 9 was diagnosed with tspk when he was 4 years old. He was on steroids for years which now caused him to have glaucoma.
Steroids do not help tspk. They only make it worse. We were seeing some of the finest cornea doctors in the country and even they did not know what to do.
Now we just use preservative free lubricant eye drops (over the counter) for comfort ,-and dark sunglasses.
The eye drops to help slow the glaucoma dry the eye. What can you do if you don't want to go blind?
Sorry - just trying to be positive and hope someday for a miracle cure.
Good luck to you..

Interesting comment about contacts. I have read about contacts as a treatment and don't understand that one. I have my own little experiment going on. In summary my results in the 2 1/2 years since my diagnosis is that I am prescibed Zylet at first upon flare up because it has an antibiotic in it followed by Alrex for 4 weeks starting with 4 drops per week down to one drop each week in the last week. I have not been able to wear contacts at all since my first flare up. Here is my experiment. I wear glasses for at least 60 days before trying my contacts again. Every time without fail within about 3 days I have another lesion flare up. Today my doctor confirmed that I may never be able to wear contacts again. - Don