r/Uveitis

A few things about Amsler grids you might not have been aware of
▲ 43 r/Uveitis+2 crossposts

A few things about Amsler grids you might not have been aware of

Disclosure up front: I built a free app that includes an Amsler grid, and I'll link it at the end. But everything here works exactly as well with the paper one on your fridge.

I spent the last few weeks reading about home monitoring while building it, and a lot of what I found isn't in the leaflet that comes with the grid.

Same distance, same light, every time. Usually about 12 to 14 inches for a printed grid, but the number matters less than doing the same thing each time. Half of what looks like a change between checks is actually the room being darker, or holding it further away, or being tired at the end of the day.

Keep your eye on the centre dot. Don't scan around looking for problems. The whole point is what you notice in your peripheral vision while staring at the middle. Scanning defeats it.

Write down what you saw and when. This is the part I'd underline. "My vision has been a bit off lately" is hard for a doctor to do anything with. "Nothing on the right eye. Left eye, two wavy areas just left of centre, first noticed the 14th" is a completely different conversation.

Cover one eye. Every time. This is the big one. Your brain is very good at filling in what one eye misses using the other, so testing with both eyes open can hide a real change completely. Test each eye on its own, and do both.

Wear whatever you'd normally wear to read. If you use reading glasses, keep them on. The grid is meant to be viewed the way you view a book.

Consistency beats frequency. A check done properly once a week is worth more than a rushed one every day under different conditions. Ask your own doctor how often they want you doing it, since it depends on your stage and which eye.

Two other things that came up repeatedly and surprised me:

Not every "eye vitamin" on the shelf is AREDS2. The formulation is specific, and plenty of products marketed for eye health don't match it. Worth reading the actual label against whatever your ophthalmologist told you to take rather than trusting the front of the box.

Whatever your doctor told you about when to call urgently, keep it somewhere you'll find it. Most people are told this once, at diagnosis, when they're taking in a lot at the same time, and then it's gone. Write it down while you still remember it.

The app I built keeps grid results with dates, tracks supplements and drops, and prints a one-page summary to hand your doctor at an appointment. It's free, no ads, no subscription, no account, and nothing leaves your phone.

https://apps.apple.com/us/app/avesia/id6796212126

I'm not a doctor and this isn't medical advice. Your ophthalmologist knows your eyes and I don't.

u/rs1222 — 3 days ago

Anterior uveitis

​

I’m looking for people who have experienced something similar with anterior uveitis.

I had anterior uveitis in one eye. Initially, I mainly had redness, swelling and pain, but my vision was not significantly affected at that time. Later, I developed blurred/dreamy vision in that eye.

I was treated with Pred Forte (prednisolone acetate) and Homide/cycloplegic drops for about a month. After completing the treatment, my eye is much better in terms of the inflammation/pain, but I still have blurred vision.

Now my doctor has told me that I need glasses for that eye, around -3.50 D. This is confusing to me because I didn't have such a high prescription before the uveitis.

Has anyone else experienced this after anterior uveitis?

Did you develop a new/high glasses prescription after uveitis?

Was the prescription temporary or did it remain?

Did your vision improve further after the inflammation completely settled?

How long did it take for your vision to return to normal?

Did you have an OCT or other tests to find the cause of the remaining blur?

I’m especially interested in hearing from people who had a similar sudden change in vision after anterior uveitis and steroid/cycloplegic treatment.

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u/Stalwart786 — 3 days ago

Ozurdex implant

26F ,Hi anyone has experience in ozurdex implant in both eyes?

Does it one time implant or 2 .does it get remission for long time after that?

What are its side effect? How to tackle that?

Really very much side effect of 1 year of steroids & immune suppressant tablets.So thinking of this solution.

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u/Curious-sapiens — 3 days ago

2 years with uveitis

After struggling with uveitis for 2 years
Yearly 3 flares
I see one main thing is the significance of inflammation is important here
I would like to know how others are suffering
Is it anterior or posterior or intermediate ?
How many cells would you see if you get a flare?

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u/Educational_East_882 — 5 days ago
▲ 2 r/Uveitis+1 crossposts

recurring uveitis flare ups

i’m 26 and have been dealing with on & off uveitis for over a year now. i’ve had it in both eyes & i’ve been using pred forte steroid drops multiple times a day, along with pupil dilating drops. this is probably my 5th flare up in my right eye and my 2nd in my left.

right when i was finally tapering down from using the steroid drops every hour to 4x a day, my doctor told me to go back up to 6x a day. i know 6x is better than 15x, but it’s still incredibly frustrating.

my rheumatologist has ordered so many blood tests, but everything keeps coming back negative. meanwhile, i feel like i’m stuck in this cycle. if i don’t control the inflammation, i risk complications like cataracts and glaucoma, but the long term steroid drops can also contribute to cataracts & increased eye pressure.

right now, i’m trying to get the inflammation under control, but my most recent eye doctor was shocked that i’m not on systemic medication yet. has anyone here gone on the “pill” for uveitis? if so, which medication did you take, and what was your experience like?

i’m also breastfeeding & i’ve been told i may need to stop as soon as possible if i start systemic treatment. that part is honestly devastating to me. i tried incredibly hard to maintain both my supply (pumping every 2 hours kn the clock for months) & teaching my baby to latch for 2 months in the beginning of this journey. i also understand that some of these medications may mean avoiding pregnancy while taking them & i don’t like the idea of medication being risky.

i’m really struggling with the idea of going on long term medication. i don’t want to have to stop breastfeeding, i don’t want to put off having another baby & i don’t want to feel like i’m dependent on medication for years only to come off it later and potentially have the flares return anyway. (i’m also concerned in the side effects and what it can do long term) at the same time, i’m scared of continuing to rely on steroid drops when my eye pressure seems to be getting higher. it feels like the drops are treating the inflammation temporarily without addressing the bigger problem & being on steroids for so long is starting to affect both my eyesight & my eye pressure.

i feel completely stuck & like i’m running out of options. i would really appreciate hearing from anyone who has dealt with recurrent uveitis, especially anyone who was breastfeeding or had negative rheumatology bloodwork and eventually went on systemic treatment. what did you end up taking, how did it affect breastfeeding/pregnancy, and did it actually help prevent the flare ups long term? also curious to know on the side affects!

i’m also curious if anyone knows what caused their uveitis! i am now hearing that the covid shot is the reason for 20% of the population but curious to know if anyones blood work came back with anything!

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u/angelclouds222 — 5 days ago

Chronic iritis long term outcome? Worse or stable

I usually have recurrent iritis every year or so that gets resolved however this flare is looking to be chronic.

What happens with long term iritis?

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u/Dangerous_Sound_6511 — 5 days ago

Hit pause?

I have posterior uveitis.

Sarcoidosis has been the leading potential diagnosis for underlying cause. I’ve had 2 different reads of the same chest CT. 1 radiologist finding a nodule in my right lung, another radiologist not finding any indication of sarcoidosis.

I’ve had extreme fatigue, cough, night sweats (every night), persistent shortness of breath. I can live like this but these symptoms are definitely impacting my quality of life, work, and relationships.

The radiologist that reports no sign of sarcoidosis, is in the same health system as the pulmonary and rheumatology specialists I was hoping to see for treatment. But without an indication for them to proceed, I assume I’m not going to be accepted for referrals.

Anyone have a similar experience? Just getting stuck with symptoms beyond eyes and no plan to find a cause?

Does anyone here get prescribed methotrexate or biologics even without ever discovering an underlying cause for your uveitis?

I’m starting to think that for my mental health, I may need to hit pause and just accept that I can get treatment from my uveitis specialist but take a break from pursuing an answer for an underlying cause or treatment for the other symptoms.

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u/Routine-Economist932 — 7 days ago

Cataract surgery

Anyone had cataract surgery while having active inflammation? My eye is so bad that I can’t see clearly. Everything is blurry foggy and darker. At night I see starburst, flare, ghosting. I can’t read text or even see my face clearly from 1 meter away in the mirror.

My other eye is healthy, so my brain is trying to match the two images, and I feel dizzy and like drunk every day.

I’m on MTX, but after 3 months my liver enzymes are higher so we’ll probably need to stop it and try something else. I’m still using dexamethasone drops twice a day and three different glaucoma drops.

I’m so done with all of this. 2 years long flare, never got better. I feel like I’m going to lose my vision or something. My doctor said the inflammation is very low, maybe 0.5+ cells or less, and she isn’t worried about it. She’s more concerned about the pressure.

I have a cataract, but my doctor said it’s not that bad. Still, my vision is really bad. Has anyone been in a similar situation or had cataract surgery while there was still some inflammation? My vision was okay in January only starburst etc and then went downhill in 6 months. OTC is clear, nerves are healthy.

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u/TraditionalAd8376 — 8 days ago

Recurrent uveitis following IVF round

Hi everyone,

First of all, I'm so sorry we're all in this shitty club.

I had my first flare-up around 3 years ago (following a period of stress), and recently had my second flare-up (bilateral this time) following a round of IVF. I'm on steroid drops for 6 weeks.

I'm also experiencing lower back pain, which I've had on and off for over a decade. I've always suspected it's inflammatory.

My doctor ran a series of blood tests and I have a follow-up appointment with her in a few weeks, but found out earlier today I'm also HLA B27 positive.

My mother has arthritis, but has never had uveitis.

Has anybody here had a flare-up following IVF? I wonder if it's the stress or hormonal spikes that may have caused it (or both). As I mentioned, my first bout of uveitis was during a period of great stress, so I feel like it might be a trigger for me. Waiting for my follow-up appointment and hopefully a referral to rheumatology to find out more.

Not exactly what I needed right now in the middle of IVF!

Has anyone experienced the same?

Sending lots of love to you all.

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u/CheekyMargarita — 6 days ago

Snowglobe Vision

Has anyone else had black dots all over their vision? Mine look like target cells and when I’m outdoors it is like I am surrounded by them in a snowglobe. Do they ever go away??

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u/Left-Range8564 — 7 days ago
▲ 18 r/Uveitis

Diagnosed with uveitis at 11, I'm 23 now. Here's my story

​

I've been reading through this subreddit and thought I'd finally share my story. I'm 23 now and was diagnosed with uveitis when I was 11, so I've been dealing with this for more than half of my life.

Over those 12 years I've gone through more treatments and procedures than I can really count. I've had countless laser procedures, LASIK, cataract surgery with lens implants in both eyes, YAG laser, steroid injections into my eyes, years of different eye drops, oral steroids, methotrexate and biologics.

The steroid injections are something I'll probably never forget. Out of everything I've gone through with my eyes, those were easily some of the things I hated the most. The pain afterward was horrible, and it never really became something I "got used to" no matter how many times I had to do it.

There have also been periods where the uveitis completely changed how I had to live my life.

Some of my worst flares happened while I was finishing my bachelor's degree in software development. There were days where my vision was so blurry and hazy that I could barely see what was on my screen, but I still had assignments, exams, projects and eventually my thesis to get through.

Somehow I finished it.

I don't think most people around me at the time really understood how little I could actually see during some of those periods because, from the outside, I looked completely normal. I'd be sitting in front of a computer trying to code or study while basically fighting my own vision the entire time.

Unfortunately, treating the inflammation has caused problems of its own.

I've developed glaucoma/high eye pressure in both eyes, and steroids can send my pressure extremely high. At one appointment my pressures were 42 in my right eye and 37 in my left. So a lot of my treatment has felt like a balancing act between controlling the inflammation and trying not to damage my eyes from the treatment itself.

I've been on methotrexate 25mg weekly for a while and have also been through plenty of prednisone. I was also taking Hyrimoz (adalimumab) injections. They're now switching me to a different adalimumab biosimilar, and my doctors are also working on getting me Acthar Gel twice a week.

At this point the goal is pretty simple: find something that keeps the inflammation controlled long term and hopefully reduces how much I have to depend on steroids.

After having this disease for 12 years, I've also become extremely aware of my vision. I notice every new floater, every little change in brightness, haze, colors or peripheral vision. I've probably covered one eye and then the other thousands of times just comparing them.

My right eye especially has taken more of a beating. It's hazier and blurrier than my left, certain colors don't look quite the same through it, and I've noticed changes in my peripheral vision. Even after all these years, when something changes there's still that immediate thought in the back of my head wondering whether another flare is starting.

The hardest periods haven't necessarily just been the procedures or medications though. It's trying to build a normal life while all of this is happening in the background.

I spent a lot of time worrying about what I could or couldn't do because of my eyes. Eventually I realized I couldn't structure my entire life around being scared of another flare.

So I kept going.

I finished my bachelor's during some of the worst flares I've ever experienced. I built a career in tech and now work full time staring at computers all day. I drive, travel, go out, work on my own projects and try to live as normally as possible.

I'm doing pretty well in life right now, but uveitis is always somewhere in the background.

The biggest unknown for me is the future. I've already dealt with this from 11 to 23. I've had cataracts, glaucoma, surgeries, injections, lasers and years of immunosuppressive treatment before most people my age have ever had to seriously think about their eyesight.

Sometimes I wonder what my vision will look like at 30, 40 or 50. I don't think that thought ever completely goes away.

But after 12 years, I've also realized there's no point spending the years where I can see worrying about the years where I might not.

I'd really like to hear from people here who were also diagnosed young and have been dealing with uveitis for 10, 20 or even 30+ years. How has your vision held up over time?

I'd also love to hear from anyone who has gone through a similar combination of methotrexate, adalimumab/biosimilars, steroid injections or Acthar Gel and eventually found something that kept their inflammation stable.

I've never really talked to many people who actually understand what living with uveitis long term is like, so I figured it was time to finally share my story.

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u/lisichupoo — 11 days ago

Uveitis in pregnancy

Hi everyone,

I'm in my first trimester and I've had a flare-up. So far I've had 5–6 flare-ups, occurring once every year or two. Usually it gets better with prednisolone drops, or prednisolone plus atropine. This time it happened during pregnancy, and my doctor started me on prednisolone three times a day, but it isn't getting better. She's asked me to see a uveitis specialist, but the appointment is two weeks away. I'm a bit scared about what might happen, especially because I think very few drops are approved for use during pregnancy.

Has anyone had a similar experience?

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u/DisplayOk9824 — 10 days ago

I feel hopeless

Been in a flare up for 2 years now. I feel so hopeless, in my late 20s, can’t work/drive. My life is at a halt seeing everyone else move on with their life. Not sure what the cause is from, assuming stress. Now have cataracts in both eyes. I feel like my doctor is just doing trial and error. Currently tapering prednisone, and taking amjevita injections weekly. Suppose to be taking prednisone drops but I feel like it’s just making my vision worse. I just feel like giving up. Say try not to stress but how can I not when I sit at home all day with nothing to do but think about my life and what I can’t do.

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u/Dizzy-Function-6471 — 10 days ago

I hate this

I was diagnosed with intermediate uveitis/parsplanitis about 6 years ago. We have tried methotrexate and corticosteroids, both together and separately, in injections and tablets, but nothing has had any effect.
After that, we tried mycophenolate mofetil, but unfortunately that didn’t help either. I was also on adalimumab for a while, but I developed a very rare side effect: my optic nerves swelled by more than 20%.
I’m currently only taking mycophenolate mofetil, but my vision is getting worse and increasingly blurry every day. I can no longer watch TV or do my schoolwork on a computer.
I’m honestly exhausted and feeling really hopeless about this.
Does anyone else here have intermediate uveitis? What treatments helped you, and where did you finally get help?

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u/Snolkat — 11 days ago
▲ 5 r/Uveitis+1 crossposts

Humira not working for Uvitis (JIA)

I've been taking Humira for about 10 years now and I think it stopped working. My uveitis is coming back every 2 weesk for the last year or so. I've been also taking Decotin for a short while and it helped but it came back after i stopped using it. They have decided to up my dosage to 80mg every two weeks 3 months ago but my Uvitis still activated. I'm scared now what my options are and how I will feel on them. I'm 25 also. Anyone in similar situation has any advice? I'm also a designer so I'm really scared fir my vision in the future.

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u/ShinyRed00 — 13 days ago

Exhausted

Hi

Has anyone notice a correlation btw a flare up and being absolutely exhausted?

My uveitis came back in my bad eye, and ever since I’ve been literally exhausted and needing to nap at least once a day.

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u/Lankylamama — 13 days ago

thoughts??

I was recently told that if i continue having frequent uveitis flare ups, i may need to consider azathioprine (imuran).

since 2018, I've been having around 1-2 flare ups a year. between 2018-2022 the flare ups were more severe and required months of treatment (eyedrops and prednisolone). nowadays the flare ups are very mild and will usually require a month (at most) of eyedrops. then i'm good.

i absolutely hated my experience with prednisolone, and i'm so glad i'm not on it permanently!!! however, my doctor recently said that if i continue having frequent flare ups, i should consider imuran.

I’m mostly worried that Imuran will be similar to prednisolone in terms of side effects and how it makes me feel.

Is 1-2 flare ups a year considered "frequent"? I understand that a month of recovery with eyedrops isn't ideal, and could cause a lot of harm in the long run, but I have my eye pressure checked regularly..

i just feel that the flare ups are manageable... and while spending 1-2 months of the year on recovery isn't fun or ideal, i don't think it's that bad.

Any advice or thoughts would be appreciated!!!

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u/Reasonable_Star2005 — 13 days ago
▲ 5 r/Uveitis+1 crossposts

Uveitis/trockene Augen welche Befeuchtungstropfen/Gel könnt ihr empfehlen

Ich habe extrem trockene Augen so arg das auch die Sehschärfe drunter leidet.

Ich habe schon so viel probiert ..momentan nutze ich Hylo Dual Intense aber die sind halt heftig teuer.

Was hat bei euch funktioniert ohne zu schmieren oder zu verkleben ? Was nutzt Ihr zur Nacht ?

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u/clemens_nurso — 14 days ago

How long is your usually treatments including taper?

Just want to get an idea, I haven’t had a flare up for a year but i feel like this one is taking longer than usual.

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u/Dangerous_Sound_6511 — 12 days ago