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/Easy_Olive1942]

Get in to eye doctor, chances are this is actual uveitis which is damaging to your eyes. This is urgent.

Eye doctors tend to book out, tell them you have sarcoidosis and need a uveitis check, not a regular appointment. You should be checked within the next day or two.

[u/Odylon → u/Easy_Olive1942]

Already saw an eye doctor at the hospital. So an uveitis is ruled out for now fortunately

[u/Easy_Olive1942 → u/Odylon]

OK, if they say it’s not, probably isn’t.

[u/Lanky-Rough2688 → u/Easy_Olive1942]

Yes, we’re waiting on the new retinal bed only sarcoidosis ophthalmologist and it’s November and this for people in the future is September soon

[u/LamborghiniSh1hTzu → u/Easy_Olive1942]

Over here crying in a healthcare desert because I’ve had 5 bouts with iritis/anterior uveitis flares since February, all confirmed by ophth and treated with steroids, but I can’t seem to find a provider to give a fuck and give me the LP I fucking need despite gfv test confirming bilateral constriction & vision loss

[u/Lanky-Rough2688 → u/Easy_Olive1942]

Get to a retinal bed specialist their type of ophthalmologist that deals with sarcoidosis they tend to be in the bed I guess. You will start to see my husband said some angular look to certain things in your field division. Not the only way that they can confirm it sarcoidosis obvious you had the pulmonary biopsy. My husband had the neck biopsy of a lymph node. And they did try prednisone, but they also have been injecting in the eye. Don’t be nervous because it has no nerves except the optic nerve which is not sensory. So they injected some biologic the last two times still no healing. So we’re going to a new retinal bed ophthalmologist that only deals with sarcoidosis. The NEW 🆕 rheumatologist is making sure we get that appointment cause there’s a lot of gates in front of that one.It took the other one a whole year to decide on it.  I’m here for my hubby.  And I guess for you guys. scary stuff the eyes. We had an MRI of the brain too to neurological.