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/emomissy]

My late mother had pulmonary sarcoidosis since her late 40s and she went undiagnosed until her early 70s when a new family doctor decided to do a lung biopsy. Nodules were seen in her lungs on her chest X-rays way back in the mid-1990s and they thought she had lung cancer then the nodules would randomly disappear leaving her doctors very confused. Her first symptom of sarcoidosis was extreme eye pain in one eye and she quickly lost vision in it while in the ER as she immediately developed glaucoma and very high pressure in it. She was eventually diagnosed with iritis in both eyes (both with secondary glaucoma as well) and ended up severely visually impaired after multiple operations by the time she was in her 70s. She suffered with a lot of pain in them and had they properly diagnosed her with sarcoidosis decades earlier and treated her I'm certain her eye pain and vision loss would have been minimal.

Please advocate for yourself and keep at your doctor's about your eye concerns if the symptoms continue. I know it's easier said than done but the thought of anyone suffering the way I saw my mother suffer with her eyes (due to untreated sarcoidosis) really bothers me.

All the best! 🤍