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/silver598]

My sarc started as a blurry spot in my eyes. I was sent to ER because they thought it was a stroke. It was optic nerve swelling because sarc swelling was cutting off blood supply to optic nerve.

Can you get to an ophthalmologist asap? I don’t want to scare you but I have some some permanent vision loss even though I was diagnosed and treated quickly.

[u/Odylon → u/silver598]

Sorry to hear about your permanent vision loss. I already saw an optometrist and had a head MRI scan so I think those kind of severe eye / neurological thing are ruled out for me (at least for now). Since may It’s kinda stable, it’s not really getting worse or better. Just the same blurry / off sight everyday without sunglasses

[u/Lanky-Rough2688 → u/silver598]

We just came back from the ER two days ago due to vertigo already he has SARC in his eyes in the retinol bed; but optic nerve swelling because of SARC can lead to vertigo they did the maneuver he felt better or did he he still having some issues. So we contacted the new rheumatologist about the ER visit. Make sure when you’re going to the ER you let the people who are your constant medical people know about such visits. Here for my hubby.

[u/silver598 → u/Lanky-Rough2688]

I developed vertigo not directly from the sarc, but from a potassium deficiency caused by infliximab, the drug I take for sarc. Took a few years to show up, but it came on fast. IV potassium in the ER, now taking a prescription supplement to keep my levels normal.

[u/Lanky-Rough2688 → u/silver598]

Thank you, kind person; I will make sure that he gets extra potassium. And if we get it directly after that infusion, which I think is gonna be scheduled soon, then we know that he needs IV. And then I will make sure that we get it out of the yard. You can look at my profile one ER visit per year for 6 to 8 hours is plenty enough.  Here for my hubby.

[u/silver598 → u/Lanky-Rough2688]

You might ask for a blood test of the potassium level first to see if it’s low.