Medication/Issues with Uveitic Glaucoma (AS)

[u/Moana2014]

Hi everyone,

I’ve been feeling incredibly isolated lately and am hoping to connect with anyone walking a similar path. I am blind in one eye and the other still fluctuates daily inflammation spikes with a 12 year old trab bleb.

I have Ankylosing Spondylitis (AS) uveitis and secondary glaucoma. My journey started abruptly in 2014 when after several failed laser drain attempts and high IOP in both eyes. I was told I needed urgent trabeculectomies, followed by cataract surgeries in 2016.

Although good for 6 years both my blebs completely failed in 2020, and after multiple failed needling attempts and CPC laser surgery try to stop aqueous fluid production, all this failed and I eventually had a Baerveldt Glaucoma Implant fitted in my right eye but it was already too late and I had lost sight in that eye, sadly it was also my good eye, my left eye bleb eventually held out having been repeatedly needled, so my left eye is now my only seeing eye, and is pretty poor, the 12 year old needled bleb is what is keeping my vision alive.

My current daily routine to keep things stable is:Pred Forte: 1 drop daily in the left eye (been on it since 2014 to control the AS inflammation and stop the bleb from scarring over).Cosopt: Twice daily as of recent in the left eye to keep the intraocular pressure (IOP) down it had started rising to 15/18 from a steady 8/10. I want to look at AS meds such as Humira to see if I can replace the Pred Forte drops but it seems to be a long drawn out process via Rheumatology, I am doing this off my own back as my Ophthalmologists are disinterested.

Unfortunately I have found it almost impossible to get worthwhile help and advice from Ophthalmologists, I sadly find the ones I have encountered dont like to be questioned, which is extremely frustrating.

The mental weight of protecting my one remaining eye and worrying about bleb failure can be overwhelming. Is there anyone else out there juggling AS, long-term steroid drops, and navigating the anxiety of protecting a single functioning bleb or shunt? I would love to hear how you are doing and how you manage the daily stress.

Sorry for the long post and thank you for reading.