Anyone else have Episcleritis and Glaucoma?

[destiny234]

I have steroid induced open angle glaucoma diagnosed in June this year. I have had an autoimmune condition called Relapsing Polychondritis for 20 years and this has affected my eyes resulting in overuse of steroids. My dilemma is I need to use a maintenance steroid drop (dexafree)twice a day in each eye to keep the episcleritis at bay (doesn`t always work). This of course increases pressure. My ophthalmologist is happy to go along with this for now since his introduction of Trusopt drops twice a day has reduced eye pressures from 19 to 13 in both. I am also on fixapost once a day and have been for 20 years. I also have severe dry eyes which require other drops.

When I have an episcleritis `flare` I have to go on a tapering dose of the steroid eye drops over a week or so, this is very worrying now I have glaucoma, but the only alternative is to go back on DMARDS and my ophthalmologist has mentioned it briefly. I am reluctant to though due to past experience of becoming neutropenic. I don`t feel that for the rare- ish occasions i have an eye flare that it is worth taking DMARDS all the time with all the side affects that come with them.

Does anyone else have a similar problem/experience they could share with me? Many thanks

[Shinal_GlaucomaUK Administrator]

Good afternoon, I am sorry to hear you have glaucoma from taking steroid eye drops. It is worth talking to your ophthalmologist about alternatives but also speaking to your consultant that you are under for Relapsing Polychondritis. I hope there are other people on this forum who can help and relate to you. Kind regards

[Menla]

Hi Destiny, I just joined and found your post. I also have Relapsing Polychondritis and severe dry eyes (most likely Sjogren’s), and I rely on steroid eye drops. I additionally use plasma rich protein eye drops, which are ordered by my eye doctor, then made for me at a compounding pharmacy. I use Hypochlorous Acid spray to cleanse my eyes 2-3x a day and Invisia moisturizing eye drops. I follow an anti inflammatory diet with high Omega 3 fatty acids. Additionally I take Bromelain and Boswelia, lots of Vit C, Magnesium, some liquid Zinc, Quercetin - L-Lysine…. and I take Low Dose Naltrexone at night (which I get from an online pharmacy.)

Dietary changes have been eliminating nightshades and processed foods - most dairy and gluten. It’s a challenge, and this has been a long road of discovery - but I’m feeling pretty good a lot of the time. If my eyes really flare, a few weeks of Doxycycline helps. A humidifier also helps in the winter.

Hope some of these suggestions might be a benefit to you and others!