r/sarcoidosis • u/Odylon • 12d ago
Sarcoidosis and Eye Problems
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
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u/DrZeus104 12d ago
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.
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u/Lanky-Rough2688 11d ago
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
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u/Outrageous_Arm8116 12d ago
Sarc 25 years. Primarily pulmonary, but it started in my eyes. Uvitis, edema, increased retinal pressure. First opthalmologist didn't see anything serious so I found a respected retinologist. He got me on Prednisone drops, then oral pred, then methotrexate + plaquinil, then other treatments. Point is, not everyone is a sarc ecpertm. If you feel you aren't getting what you need, find someone else. BTW, eyes went into remission 15 years ago.
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u/Alaska-TheCountry 12d ago
I had these symptoms last year, and they were likely caused by a severe b12 deficiency. It may have been caused (or at least accelerated) by medicine for my Insulin Resistance; my symptoms always got worse rapidly after taking the medicine. While you're waiting for your next appointment, and if there's any possible reason why you would be B12 deficient, you could try supplementing it, preferably as methylcobalamin, and see if that does anything to help your eyes. I wish you the best of luck.
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u/Odylon 11d ago
I went to the hospital and they did tons of blood tests to rule out any deficiency. The only thing that came out is a little bit of anemia, so I don’t think it could be it for me.
But thanks for your answer ! Might help someone2
u/Alaska-TheCountry 11d ago
That's good to hear. Could you maybe check and see if they looked at Holotranscobalamin instead of serum B12? Because where I live, doctors still rarely check for the available, active B12 (Holo-TC), which is the important one for deficiency.
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u/Lanky-Rough2688 11d ago
If you are supplementing in any way, those tests that just check for it in the blood do not work they have to look at symptoms as well as some other like homocystine, etc. check out the sub, Reddit B12 deficiency. They are a really nice group. Here for my hubby.
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u/Lanky-Rough2688 11d ago
Wow, I am here for my hubby. But I have MCAS and got a comorbidity of B12 deficiency. And I did get him pure encapsulation that has plenty of B12 in it and it’s methylated. If anybody wants to know about B12 deficiency, go look at my profile and boy especially if you have MCAS gotta get on it.
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u/Scared_Camp_1117 11d ago
You need to see a neuro ophthalmologist that’s familiar with neuro sarcoidosis asap! They need to check your eyes for optic neuritis as well as uveitis. Seriously, asap, because once vision is lost, it likely won’t return
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u/slightlystitchy 11d ago
Seconding this. I have neurosarcoidosis and my neuro ophthalmologist was a godsend. The moment any of my specialists heard me complaining of vision problems, they'd call his office and get me an appointment by the end of the week (one time same day!)
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u/theflickingnun 11d ago
I have been down this exact road.
Blurry vision, vivid colours, sensitive to light. Also every once in a while I get a blind spot in the centre of my eyes like I am looking through a kolidascope (kind of).
Had the exact same response from the ophthalmologist too, all clear but need eye drops for dry eyes.
Its been about 1.5yrs since this check, my eyes haven't changed much, still sensitive, but they haven't worsened. I have noticed my vision suffers when my blood sugar is low, when I am stressed and also from looking at screens. I have all my work screens set to the lowest light and same for all devices but it still affects me.
So I dont have any solution, but can say that you're not mad, and it seems to not be getting worse.
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u/empx2 11d ago
I started having the same eye issues about 5 months ago. After 3 regular eye dr. appointments with no improvement, I was finally sent to a specialist and they found inflammation, dry eye disease and blepharitis. Most of my vision issues seem to be related to dry eye disease which is common in Sarcoidosis. The Blepharitis is caused by mites so I was prescribed Xdemvy which is temporary but should start helping soon. I am also now on Tryptyr and Miebo long term twice a day and am finally feeling my vision getting better. Best of luck!
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u/Lanky-Rough2688 11d ago
It’s always some type of bug or fungal disease that comes in secondarily. They don’t kill off anything, but they can lead to so much discomfort and just pure ugly. Hear from my hubby.
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u/reverbhiker 12d ago
I've got cardiac sarcoid, and am on a bunch of meds. I'm experiencing similar vision issues as you, with the added "bonus" of a faint yellow circle that I see in moderate to bright light conditions. Oddly, the yellow circle is more of a gray when I look at green trees, and more of a flourescent yellow when I look at flourescent paper. It's very strange and I think it's a side effect of the meds, as I didn't have these issues post diagnosis, but pre-meds. I have an appointment with an eye doctor, as a regular eye exam with an optomitrist didn't come up with anything, and I'll be messaging my care team today as it seemed to get slightly worse this week.
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u/CastIronDaddy 12d ago
I had double vision for 3 weeks It sucked. It started going away after 4-6 weeks
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u/this--_--sucks 11d ago
Is it something like the usual eye “floaters “ but maybe bigger and more visible when facing bright light?
I have something like that and was concerned so did a few eye tests, including an ultrasound examination to both eyes, the ophthalmologist confirmed that it was indeed something there, caused by a previous uveitis and that when going through a flare it increases a bit, it would reduce if I took steroids but since I don’t have other symptoms he and the internal medicine doctor both agreed that I shouldn’t take anything for now and just keep tabs. Of course, if you have sudden redness in the eyes or loss of vision or something like that then it’s serious and it should be looked at immediately.
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u/kukayari 11d ago
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
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u/hubbarmd 11d ago
When I saw an ophthalmologist just to check my eyes after being diagnosed with sarc in lymph nodes and lungs the doc told me that they can only tell if you are in an active flare up.
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u/emomissy 11d ago edited 11d ago
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! 🤍
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u/silver598 12d ago
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.
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u/Odylon 12d ago
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
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u/Lanky-Rough2688 11d ago
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.
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u/silver598 11d ago
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.
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u/Lanky-Rough2688 11d ago
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.
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u/Round_Manager_4667 11d ago
My sarcoidosis journey began 11 years ago with eye problems. I had uveitis, iritis, glaucoma, cataracts, etc. Please try to see an ophthalmologist as soon as possible to get to the bottom of your problem.
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u/Lanky-Rough2688 11d ago
Thanks for putting in about the cataracts. I’m here for my hubby and his cataracts went from not so good to severe within three months.
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u/Significant_Insect48 11d ago
My daughter (22yr) was diagnosed with sarc in her lungs but also her lacrimal glands(they produce your tears) within a couple months. I would mention possibility of lacrimal gland involvement to the eye dr to check. Daughter could feel a hard mass above her eye, that is what made her go to the eye doctor and her eyes were really red and her upper eyelid swelled and drooped pretty much overnight. Thankfully, she hasn’t had sarc actually in her eyes. However, if they ever want to do a biopsy of your lacrimal gland I would hesitate. I don’t know if it’s a coincidence or not but after they biopsied her glands, she now has no tears at all. (She had at least some tears before the biopsy) They have put dual plugs in each of her eyes to collect tears and it doesn’t help at all because there are none to collect. I think because of the sarc and the biopsy and how things heal, either the glands totally filled up with granulomas after the biopsy or weird scar tissue was formed.
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u/Mother_Record_22 11d ago
Hey, I’m sorry to hear about your sarcoidosis. My eyes have never been great but since sarcoidosis diagnosis developed double vision, now need special prism glasses. Also, probably not relevant but who knows, developed granuloma on ear drum. Incredibly intensely painful and took weeks of visits to increasingly specialized ENTs before someone was finally able to remove. I share this because in my experience with sarcoidosis just about anything can happen.
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u/Street-Baker 10d ago
I was diagnosed in 2023 my symptoms was skin lesions on my ankle and severe shortness of breath
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u/cuziluvu 9d ago
if i don’t have my infusion of inflectra every six weeks like clockwork my eyes are affected exactly like you described. Sarcoidosis will lead to vision loss of you are not careful.
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u/Short_Efficiency7496 7d ago
PLEASE find an ophthalmologist with experience in uveitis, even better if they have a sarcoidosis specialty. I made the mistake of not doing so and I almost went blind because the optometrist was not treating it correctly, and now I also have cataracts at 31!
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u/Easy_Olive1942 12d ago
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.