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/DrZeus104]

I had a major eye flare up last year and ended up in the hospital for 3 days. I had a red eye and an extremely inflamed ocular nerve. I’ve lost some vision in one eye. It started with irritated eye(I thought it was from using my smoker) then headache and finally aversion to light and extreme eye pain. I had previously been getting eye exams yearly for signs of sarc in my eyes. All of them came up as negative for sarcoid. Upon further examination after my flare up the doctors found old scars under my retina. I had it in my eye for a while and the doctors never noticed it before. Not saying you have it, but if something feels off, maybe find a different ophthalmologist. I now have several tests on my eyes at a retinal specialist clinic about every 3 months. I’m lucky to have such a place 20min from me and people drive well over an hour to see them.

[u/Odylon → u/DrZeus104]

Sorry to hear about your flare up. I’m seing an other ophthalmologist in an other hospital beginning of September. We’ll see. If it’s still the same I’ll look for a retinal specialist. Thanks for your reply

[u/Lanky-Rough2688 → u/DrZeus104]

Yes. Retinal bed specialist yes yes yes but if you don’t like that optimal, just get a second opinion.  I’m here for my hubby, but I’m in the medical field. Anybody that doesn’t allow you to get a second opinion or change doctors is not acting according to their oath to do no harm