recurring uveitis flare ups
i’m 26 and have been dealing with on & off uveitis for over a year now. i’ve had it in both eyes & i’ve been using pred forte steroid drops multiple times a day, along with pupil dilating drops. this is probably my 5th flare up in my right eye and my 2nd in my left.
right when i was finally tapering down from using the steroid drops every hour to 4x a day, my doctor told me to go back up to 6x a day. i know 6x is better than 15x, but it’s still incredibly frustrating.
my rheumatologist has ordered so many blood tests, but everything keeps coming back negative. meanwhile, i feel like i’m stuck in this cycle. if i don’t control the inflammation, i risk complications like cataracts and glaucoma, but the long term steroid drops can also contribute to cataracts & increased eye pressure.
right now, i’m trying to get the inflammation under control, but my most recent eye doctor was shocked that i’m not on systemic medication yet. has anyone here gone on the “pill” for uveitis? if so, which medication did you take, and what was your experience like?
i’m also breastfeeding & i’ve been told i may need to stop as soon as possible if i start systemic treatment. that part is honestly devastating to me. i tried incredibly hard to maintain both my supply (pumping every 2 hours kn the clock for months) & teaching my baby to latch for 2 months in the beginning of this journey. i also understand that some of these medications may mean avoiding pregnancy while taking them & i don’t like the idea of medication being risky.
i’m really struggling with the idea of going on long term medication. i don’t want to have to stop breastfeeding, i don’t want to put off having another baby & i don’t want to feel like i’m dependent on medication for years only to come off it later and potentially have the flares return anyway. (i’m also concerned in the side effects and what it can do long term) at the same time, i’m scared of continuing to rely on steroid drops when my eye pressure seems to be getting higher. it feels like the drops are treating the inflammation temporarily without addressing the bigger problem & being on steroids for so long is starting to affect both my eyesight & my eye pressure.
i feel completely stuck & like i’m running out of options. i would really appreciate hearing from anyone who has dealt with recurrent uveitis, especially anyone who was breastfeeding or had negative rheumatology bloodwork and eventually went on systemic treatment. what did you end up taking, how did it affect breastfeeding/pregnancy, and did it actually help prevent the flare ups long term? also curious to know on the side affects!
i’m also curious if anyone knows what caused their uveitis! i am now hearing that the covid shot is the reason for 20% of the population but curious to know if anyones blood work came back with anything!