Sjogren's Hydroxy and Glaucoma confused about the tests I have!

When I was diagnosed and given Plaquenil I had a baseline eye test, the hospital had an eye clinic since closed. Don't remember exactly what they they did. I also had red eyes, which were found to be totally dry with the test, so had eye drops.and Sjogren's diagnosis.

Then I went I think yearly to a different hospital, always had the drops which dilate the eyes and a field test. I understood this to be looking for damage from the Plaquenil.

Then 3 years ago I had a car accident and banged the left eye, massive bruising lots of tests but told no permanent damage. At same time I was sent to a mobile glaucoma unit. (by who?) the tests seemed the same. I also have relations inc brother with glaucoma. Been there every 6 months.

Then As I kept saying to Rheumy that my eyes get very red with no response,other than 'they are dry' when I saw her registrar she was worried and sent me to a specialist? but linked to a hospital miles away. On the day I went they were not red!!! but he changed the drops to preservative free. and said to go to his emergency clinic if they flare up so he can see them red. But I haven't yet - too far away. And no damage seen by him.

Went to glaucoma unit today and told that 3 years ago left eye seen to be different to right, around a nerve and this flagged up the glaucoma screening. BUT she said they(in this unit) were not testing for potential toxicity from plaquenil, there were better tests for that??? or looking at the red eye problem, only glaucoma. She said that the dry eyes would never cause damage but I should try over the counter drops as they are newer and better than prescription ones??? and consider having tear ducts blocked. and that eye clinics were over run and don't do regular tests for Hydroxy/plaquenil toxicity anymore??? She was insistent that the toxicity needed different tests??? but then who does them??

The confusing thing is that the original tests were pressure, field vision and the photo of the back of eye and those were the same glaucoma clinic tests and these were the same ones done by the consultant I saw for the red eye??? And those are ones offered by my optician. i think...well they seemed the same to me.

So what tests for what? Do I go to them all? on a recent blog it seems many of you use the optician only. i do see that I prob. needed a specialist glaucoma unit at the moment, but she also said that if what they see doesn't change it is normal for me and they will stop seeing me, who should I go to then???

A long blog but there is not one bit of my body I understand anymore!!!

2 Replies

  • I would go to an ophtalmologist who will look at everything in the whole, including your history. He/she will be able to assess in the context of the autoimmune disease you have and the treatment you get for it. You'll get everything checked properly. I went privately I wanted the specialist's full attention but you can ask your GP to refer you to NHS too.

  • Thank you, I will try for the GP referral first, although the benefit of the time you get privately can be worth paying for a session!

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