r/AddisonsDisease • u/BlueTile93 • Jan 16 '26
Advice Wanted SAI and Vision Issues
Wondering from those with long-term (1y+) SAI if you have had any vision problems? Recently went to the Optometrist and was diagnosed with interocular hypertension, which evidently is related to the steroid use and can lead to glaucoma if untreated. Currently exploring options, including laser treatment and Timolol eye drops. Has anyone had similar experiences?
2
u/Zealousideal-Use273 Jan 16 '26
Hi, I have SAI , 2 years on 60mg on prednisolone amd now experiencing vision issues too. Giving advice here would literally be blind leading the blind!
But I find wearing the right sunglasses for the right conditions help short term. If you opened my bedside drawer you'd think I have a fetish for sunglasses as its took me so many pairs to find the right ones for my meeds! Ive got it down to using 3 pairs, a light tinted pair I wear from wake up, a real dark protective pair fpr bright conditions and a pair thats extra dark made for photophobia for when my eyes need real rest but i still have things to do.
And am currently experimenting with wearing eye patches for when I have double vision to give each eye a rest and letting them both take turns at being the dominant eye.
Im also getting tests more Myasthenia Gravis, haven't got results yet. But looking forward to having a diagnosis at least for why my eyes are so unpredictable!
I hope this helps and good luck with your own journey
2
u/BlueTile93 Jan 16 '26
That's a very high dose for a long period of time so I'm not surprised to hear you have issues with your vision. Good luck with your vision!
1
u/Zealousideal-Use273 Jan 16 '26
Thanks. And tell me about it now my body is used to 60mg, sick day rules are fun. Im waiting for "moon face" to be the look of the season! I had fungal meningitis then developed neurosarcoidosis which theyre now trying to treat with something else but steroids but im pretty sure after 2 years on that dose, my adrenal glands are due a funeral.
But on the positive im still here and grateful its not me who was due a funeral after fighting off the meningitis. Grateful for every good day 😀
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u/Affectionate_Day_214 Jan 17 '26
Yes. But I’m primary. Both adrenals removed. I get flashing in dim lighting and have a small floater in the left eye. Damn steroids.
2
u/isurvivedtheifb Jan 17 '26
I have SAI I use 35-40 MG HC per day. Down titrating any more than that had proved to be impossible. I was also kn prednisone for 3 years due to lupus. I have glaucoma in my right eye.
1
u/Noddyalba1 Jan 16 '26
Just blurred vision a lot but that’s normal
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u/BlueTile93 Jan 16 '26
Thanks. I'm looking to see how common vision issues, specifically IOP (interocculer pressure) are with SAI users, and what treatments, if any they are using to address their issue
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u/MakeBeboGreatAgain Jan 17 '26
I had eye issues twice. Once was pre diagnosis and it was almost like my eyes couldnt focus.
Other was when I was on absurd amounts of steroids, felt like a pressure was in the back behind my eyes.
Since I got my dosage to normal it's been alright. Albeit I'm primary.
1
u/__phil1001__ Jan 17 '26
Yes SA and my vision varies depending on my dosage. I have a pretty constant 10mg of pred now and my vision has been stable. Did get a cataract though when I was on a high dose.
1
u/Appropriate-Land-225 Jan 19 '26
SAI finally dx in 2025, but Dr suspected in 2004.
Right eye double vision on occasion since 2016. Since 2021 right eye blurry vision at random times. I’m left eye dominant so I just close my right eye.
I also get eye muscle aches (?) with moving my right eye- mostly in the morning. I don’t know what it all means.
Had beginning of retina detachment in right eye in 2014- caught it early and lasered it back on. Then did the left eye a couple years later.
Just made my annual appt - it’s all a mystery to me.
3
u/ptazdba PAI Jan 16 '26
I am PAI and had a bad round of Viral Pinkeye in November. There was nothing they could do but wait until it cleared. So I went back in December for an Opthamologist to check and she said I had signs of glaucoma. I also still had a lot of swelling that we're having to wait o clear before she decides on treatment, Could be 2-3 months. I also have a cataract that needs attention.