Has anybody got Holmes Adie (Tonic pupils) in both eyes?

[HoundLover64]

When I first got eyeinflammations 25 years ago, I ended up with a blocked tear ducts, no feeling on the outside of my eyeballs and two dilated pupils that don't become smaller in bright light. The latter is called Holmes-Adie Syndrome, Adie pupil or tonic pupil. It usually affects just one eye. Unusually, I have this in both my eyes which is much rarer. At the time I was told it was not connected to Behçet's but since then, cases have shown there may be a link between the tonic pupils and Behcets Disease and or autoimmune conditions.

Symptoms are my prescription or reading and middle distance has jumped up quite a bit and bright lights bother me. Treatment given was pilocarpine eye drops to shrink pupils but it made my brow stiff and cramped.

I'm just curious to see if anyone has had Holmes-Adie pupils? I'm not too bothered by mine, just wanted to see if folk had a double dose of Adie pupil,

So,

[madrandy]

my right pupil stopped refracting 5 years ago. It’s as big as it can get and light hurts it very badly. It’s the same eye that I lost the cornea in 2017 from to many uveitis attacks. I was blind for 3 years and then I had a transplant cornea but it failed from bechets attacks after two years so now I can only see out of my left eye again.

[HoundLover64 in reply to madrandy]

Oh wow! It seems clear if you had uveitis that it probably included iritis and the iris is a sphincter that opens and closes, it's just a muscle but any scarring can stop the pupil contracting (I'm assuming you meant contracting, rather than refracting? The cornea refracts light, the lens further refracts but as far as I know, I don't think the pupil bends the light? I could be wrong).

I've noticed that my left eye is absolutely numb. I've had so many inflammation of the eye and it was permanently red for about 5 yrs but most often I couldn't get it checked because nobody thought I had Behçet's, saying that the wrong part of the eye was inflamed for it to be Behçet's (iritis, conjunctivitis, blepharitis, scleritis, episcleritis but never told I had uveitis) . Which looking back sounds like nonsense because you can get vasculitis anywhere in the body and not everyone with Behçet's gets any eye involvement anyway.

So presumably if your corneal transplant was rejected, or hot inflamed again, you will have very frosted window vision? If light is really bothering you and you can't always get relief from dark glasses, maybe ask your eye Dr if using a medicine can help to constrict your dilated pupil?

For example, I was prescribed pilocarpone for a while. But because I have an allergy to preservatives I had to throw away my drops after 7 days and get new ones. It became really difficult back then. And I had no idea I could get a yearly prescription card so I was paying full for all my prescriptions whilst off sick on half pay (£6,000 per year).

[madrandy in reply to HoundLover64]

Hi. I’m to tired today to read the full message but I will when I feel better. I’m recovering from my second liver cancer surgery

But yes I’ve had iritis many many times. And what I mean about my eye is that my pupil does not close anymore. It has been wide open for 4 years+ all my doctors said is that it’s broken and my eye doesn’t refract anymore. All I know is I have one black eye and one brown eye and the light hurts it because the pupil stays big. In doctors terms , I was told my pupil doesn’t refract and it’s broken from to much stress from behcets effects.

[HoundLover64 in reply to madrandy]

Mine too. But certain medications can do the job the iris muscle is supposed to do. So you might be able to get help for that. Mine will not close in light, as it's broken, but certain drops artificially get it to constrict.

With a pupils wide open, I got cataracts really quickly.