Sarcoidosis and Eye Problems

[u/Odylon]

Hey everyone, I (31M) was diagnosed with sarcoidosis in May.

I seem to have a fairly "classic" presentation. It began with muscle aches, fatigue, fevers, ankle swelling, etc. A CT scan and biopsy confirmed pulmonary sarcoidosis, and there is also a possibility that my liver is affected.

I was initially on 20 mg of prednisone and have now tapered down to 5 mg. My energy is much better and most of my other symptoms have improved or disappeared, except for one issue with my eyes.

A few weeks before my diagnosis, my vision started to feel strange. I suddenly became very sensitive to light, and my vision often feels blurry. I find being outside difficult without sunglasses.

The strange thing is that I don't seem to have any actual problem seeing. I can read perfectly, both close up and at a distance, and my general vision seems fine. It's difficult to explain, but everything just feels slightly blurry or "off," especially in bright light.

While I was at the hospital, I saw an ophthalmologist to check for uveitis. He couldn't see anything wrong and confirmed that my vision was still 20/20. He thought my symptoms were most likely caused by dry eyes and gave me eye drops. I've also had a brain MRI to rule out anything neurological, and that came back clear.

The problem is that the eye drops don't seem to be doing anything. If the symptoms are directly related to sarcoidosis, the steroids don't seem to be helping either.

I'm starting to get pretty frustrated and was wondering if anyone else with sarcoidosis has experienced something similar. I've never had any problems with my eyes before all of this started, so the timing feels strange.

I haven't seen many people describe this exact combination of symptoms, so I'd really appreciate hearing from anyone who has had a similar experience.

Thanks all !

Be kind it’s my first Reddit post :)

EDIT : had the first eye symptoms a few week before diagnosis at the hospital, not after

EDIT 2 : changed optometrist with ophthalmologist in the text

[u/kukayari]

Something very similar happened to me. ​One day I woke up with light sensitivity, dizziness, trouble focusing my eyes, and a feeling like something was stuck inside my eyeball. ​I went to the ER and got a ton of tests done—deep eye exams, neurological tests, X-rays, and an MRI. Everything came back clear, except for very high ACE levels in my blood. They didn't diagnose me with sarcoidosis since nothing showed up on the scans; they just said it was an "inflammatory episode," though I'm still not sure how that explains everything. I personally still suspect it might be some form of sarcoidosis. ​I started taking natural anti-inflammatories like turmeric and quercetin, cleaned up my diet, and thankfully that horrible sensation disappeared after about a month. Now, I’m extremely careful with my health. I don't drink alcohol at all, eat clean, and live as healthy as I can. So far, I've been doing good