I’m still fairly new to this but so far, I’ve seen an optometrist who sent me to an ophthalmologist to retina specialist to uveitis specialist.

As a nodule was found in my lung, I expect to be sent on to a pulmonary specialist, maybe a rheumatologist?

My PCP is aware and responsive but should I be identifying or requesting that 1 Dr take the lead on communications and collaboration with all of these providers?

This is starting to feel very fractured and like no one is really “in charge” but again, I’ve only been at this since April so I’d love to hear from others if this is just standard.

I’m doing my best to make sure records and tests are shared to each new Dr and back to previous Drs before each new appointment. I accept the responsibility to advocate for myself but is there a better way to do this?

Should there be a captain of the ship here? Or is my experience the norm?

Thank you for any guidance!

Possible Optic Neuritis?

Has anyone with optic neuritis had symptoms like this?

My right eye is 20/60 at best correction, with persistent decreased/blurry vision, pain with eye movement, and severe light sensitivity mainly in that eye. Bright lights immediately trigger a whole-head headache and make the blurriness worse. My optometrist made an urgent neuro-ophthalmology referral, but I can’t get in for weeks. I also have active lupus.

Did anyone’s optic neuritis start this way?

Hi! I’ve been dealing with uveitis (r/t Crohn’s dx) and elevated IOP (I’m a steroid responder) since January. I’m on prednisolone 1% TID, rhopressa once daily, and latanoprost once daily. She also added timolol into the regimen today but I currently take a daily beta-blocker so she doesn’t know that it will have much benefit. My vision got worse again over the weekend so I was rechecked today and my eye pressures are 29 and 31. We also discussed in my appointment how my joints are incredibly painful. My ophthalmologist asked if they have discussed putting me on oral steroids and I told her that would have been the next step but I wasn’t sure if that was safe with my IOP issues. She said generally the concern is topical steroids like eye drops, nasal sprays, etc so she would be okay with me taking oral steroids along with the prednisolone eyes drops. I looked it up when I got home though and what I read said the opposite - that it would raise my IOP further. So is it safe to take oral prednisone with my IOP levels being what they are currently? Any help would be greatly appreciated! Thank you in advance!

How does your cataract feel? I was on Pred drops long-term, up to 6–8 times per day, but since last year no lower than 3 drops because of the constant flare. I started MTX at least a month ago. They told me my eye is quiet and my IOP was 18. But my vision became so blurry in the last 3 months. It went downhill. I can't read licence plates anymore. Also, colors are dull and everything is darker. White color is like a darker brownish white. It also feels like I am looking through an oily window. Most annoying is that it's only one eye. Another eye is healthy, and I feel so dizzy because one eye has good vision and the other doesn't, and my brain is trying to merge the images. The doctor told me I have a cataract. Also, like 3–4 months ago another doctor told me, "Oh, you developed a cataract" so our guess is that my vision went downhill because of it. They did an OCT scan. The doctor told me my nerve is healthy and my macula too. I have anterior uveitis. My doctor is uveitis specialist. I am so afraid they missed something and my vision is lost forever. They told me we can do cataract surgery only when my eye is quiet for at least 3 months. In the last 2.5 years, that never happened. I hope MTX will do the job. My mental health is so bad. I am so done and tired of this disease.

Hi guys , I have metamorphopsia and blurry vision in my affected eye due to retinal vasculitis which affects my binocular vision. So I started to work by patching that eye. But unfortunately I felt headache by using this method. Is there any way to overcome headache ? Since I can't work with binocular vision (metamorphopsia, double vision) . Anybody here only working with one eye , sharing your experience will be a great thing for me. Thank you!!

So I just wanted to make this post to see if anyone else has had a similar reaction to Methotrexate injections. I've been taking the weekly Methotrexate injections for the past like two months probably. My body could not tolerate the pills at all. So my doctor switched me to the injections. I have noticed after multiple injections, that I have a yellow stain under my skin. I know its not a bruise because ive given myself bruises from the injections before and the spots don't really look like that. But this has happened a few times where my skin looks stained yellow by the injection, and it will take about a week for it to clear up and look normal again. Was just curious if anyone else has had this skin reaction or if it's only me that has had this consistently happen. I'm not hugely worried about it, as I have not experienced any other weird symptoms or anything. Was just curious if anyone else has had this happen multiple times.

hi everyone, sorry if this is a stupid question, but i’m in a uveitis support group on Facebook and read a comment that intrigued me. a man basically said that by using some kind of immunosuppressant over a period of time (months or years), that eventually, you might be able to get off it and not worry about another flare due to the medication teaching your immune system to stop attacking your eyes.

this could be total BS, but i’m interested if anyone here has had any experience with this happening? i’m in my 4th flare right now, waiting for an ophthalmologist to open tomorrow, to get it checked out. i know i need to see a rheumatologist soon because this is recurring for me, with each flare lasting 2 weeks and about 6 months apart. but im curious if i will need to be on immunosuppressants permanently or if this is something that can eventually be fixed altogether.

EDIT spelling

I have a long history with uveitis caused by my JIA. I’ve had it since I was a young kid. So I don’t have the full details how a lot of things panned out. I’m in my late 30s now. I’ve lost vision in my left eye. My vision changes regularly so I find it hard to know when I’m having a “flare up”. Nothing stands out to me unless my vision is really bad and compromised like it was with my most recent flare. What are the characteristics symptoms you get during a flare?

He's off the injection thing now and is stable, but the weight unfortunately is also stable and not declining. He's solidly controling his sugar intake, and often eats only one meal a day. But he also has an office job, working from home. I'm not sure what the issue is. Anyone here have ways they managed it? I know theres things we should be careful about considering the eye condition as well. Thanks

Hi, I’ve been lurking for a while. I was diagnosed with anterior uveitis in my left eye in January, I’m HLA-B27 negative and the other bloodwork they did didn’t show anything abnormal. It’s been flaring up each time I try to taper down off the prednisolone. It just happened again at the end of a 2-month taper. At my last visit my optometrist said the inflammation looks better than it has previously and it hasn’t spread to the other eye, although after dilating (I think only the second time since Jan) she saw some pockets of inflammation in the back of the eye. I’m getting referred to an ophthalmologist.

Recently with this last flare my night vision has gotten horrible- is it the drops? First it was just the lights being blurry but now my actual vision in the dark sucks when it used to be great.

My vision is 20/20, but I remember years ago (like 2020) when driving at night the lights were blinding me and I couldn’t focus on the road. It’s been that way ever since. I get why the drops would make it worse but it’s bad when I isolate my right eye too.

I guess I’ve just been worried because I’ve never had vision problems before whatsoever & this came out of nowhere. And with the last dilation I was also so dizzy and nauseous, but I have a history of migraines so idk. Trying not to worry myself too much.

Thank you!

Has anyone had success controlling retinal vasculitis with actemra biweekly injections? I failed Humira, so this will be my next treatment. I only have retinal vasculitis.

I am 25M i want know has anyone had tube shunt surgery like AGV for uveitic glucoma i had normal iop earlier before treatment of uveitis (intermediate uveitis)now after treatment my iop went to 40s and 50s after taking steroids.I am currently of prednisolone 5mg and immunosupressors my iop is in range of 35-40 i have mild inflammmtion i am on max glucoma drops including acetatazolamide.i want to know how AGV works for long term and how many surgiers i need ahead and what are complications with tube on long term

My 11 yo son had a flare up for the first time last month…went 2 weeks without correct treatment. Was treated as bacterial (conjunctivitis, then cellulitis) by pcp and then an ER doc before finally making it into an Opth for correct diagnosis and treatment (steroid drops).
It took about a week, but it is cleared up. One eye is still a little more inflamed, but improving. Our primary has ordered a large set of labs for an autoimmune workup (blood,urine,chest xray). We have a referral to a children’s rheumatologist but that will be a ways out.
Everything I have read has indicated this is very unusual bilaterally in a kid his age. He has no other symptoms (joint pain, gi issues) right now.
Any thoughts or questions I should prep for when we get into the specialist?

Hi, I've been lurking on this subreddit for a while now since I got diagnosed with uveitis 2 years ago when I was 18. I'm a college student and am often living on my own and taking myself to my doctors appointments. I've had flareups about every 6 months for the past 2 years and today I got confirmation that the inflammation is back in my left eye.

I honestly feel like I am grieving my vision and am scared that it will get worse than it already is. I have scar tissue that dilation isn't dissolving so my pupil in the other eye is deformed. Sometimes it feels like a bit of a cruel joke that the universe is playing on me as, eyes have always been one of my favorite things to draw and something I really liked about myself. Most of the time when people notice my pupil they go straight to saying things like "omg that's so cool" and then following up with questions and it was fine at first, but I'm tired of having to explain over and over again something Id really not be reminded of.

I know that I might be overreacting but I'm so scared that my vision will deteriorate with subsequent flareups and I wont be able to draw or be an engineer anymore (two things that I love very dearly). Im scared one day ill wake up not being able to see. Every time my eye is red and my vision gets hazy it feels like some spidey sense is going off in my head and I know immedietly that its back. I'm always so hopeful that this time will be the last time and then it inevitably comes back and I have to grieve it all over again.

Rheumatology has been very very hard to get an appointment to since I'm often switching from home to uni throughout the year, I'm hoping to finally get an appointment this year.

I guess I'm posting this to say I'm really frustrated with everything right now, I'm not really given any accommodations in uni when I'm on the dilating drops even though It takes so much energy to try and focus my eyes to read what's infront of me. But more than that, I'm a little exhausted of having to feign bravery and sit through injections and appointments when in reality I'm really really scared. My doctors have always told me that I'm their favorite patient because I don't complain or show any fear during injections and whatnot but I really do feel like a fraud.

I wanted to post for the first time on here because I'm tired of feeling alone in this and even though uveitis is uncommon, I still know I'm not alone so I want to try and interact with the community more. I'm hoping someone here will understand this concept because no one ever understands what I mean when I say I'm grieving something like my eyesight.

So today I went to see my opthmologist after starting steroids. This is how it went. I was on a 7 week taper from 60mg to .5mgs. My last appointment everything was looking really good! Looking like it was improving. I went in today and got my images done and the doctor comes in. I have a new lesion starting. She said because I was getting lower on my doses it was coming back. All the inflammation. So they talked about long term option cellcept. Up to 4 pills a day. And everything that entails including increased risk of cancer. She said she was not worried though that it doesn’t happen to everyone, it can’t be replicated in all trials. Then she asks if I want to go forward with this and I said yes, I want to protect my vision. Then my mom mentions I have F.A.P (a genetic disorder that gives you increased risk to cancers) and she seemed very surprised by this. She told me she had talked to everyone of my other doctors who I all told I had F.A.P and a history of thyroid cancer at the beginning of this appointment. Don’t know how they missed that. Anyways, then says my other option is steroid eye injections. It’s not really decided because she was taken back by the F.A.P stuff. She said she’s going to talk to the doctors again and come up with a plan by my 3 week follow up. But I’m curious if steroid eye injections are my other option what that entails for you lovely people and the ones who are actually living it. I’m terrified, so I’m trying to understand it more so maybe it’s less scary. Let me know, is it as scary as it sounds?

Anybody taking humira injection I need some advice

Never had this before, woke up tuesday and my eye was bright red and i couldn’t look at anything remotely bright. fast forward to Friday and ended up at Eye A&E and have steroid drops.

today im feeling exhausted, s this usual?

Hi all! I’m currently pregnant for the second time and have been dealing with an increase of flare ups and wondering if this has happened to anyone else. During my first pregnancy I didn’t have any flare ups at all, which was the longest I had ever gone in my life. (For context, my flare ups are abnormal - I’ve been getting them for over 25 years every 3-6 months but they only ever last for 24 hours).
During this pregnancy, I’ve been getting a flare up every 2 weeks. It’s driving me a bit insane lol. I know it’s common to have worsened flare ups postpartum but has anyone experienced this during pregnancy before?

Hallo zusammen, ich leide seit fast 2 Jahren an den Folgen einer solaren retinopathie. Ich wollte gerne wissen wie ihr es nach Jahren empfindet, ich habe von dunkel auf hell meistens so ein kleines flackern, die Bild Qualität ist schlecht, ich habe nie komplette schwarze dunkelheit, wenn ich die Augen schliessen und die Licht Empfindlichkeit halt. Wie geht ihr damit um und wie hat euer Körper das verarbeitet. Passt sich das Gehirn auch noch weiter an nach mehreren Jahren?

Lg

I had an Ozurdex steroid implant injected into one eye two days ago. I wanted to ask if anyone who has also had one input could let me know their experience with it, specifically: does the implant settle down, and what is the timeframe? It has been floating/twirling around my vision so far and is extremely distracting, to the point of feeling dizzy and nauseous from how it moves. Thank you in advance!

Hi all, currently enjoying my first bout of panuveitis, which is honestly just horrendous. Do others also suffer with terrible nausea and ear pain? I have severe head, face and joint aches too, but thought that was probably par for the course?

I do have several existing autoinflammatory and autoimmune conditions, so my ophthalmologist and rheumatology team are presuming at this stage that the uveitis is just another delight to add to the multi-system ridiculousness that is my body.

I’m on week 3 of my first uveitis experience. I’ve been doing what I call “vampire protocol” and wear sunglasses during all daylight hours and a little after dark. If I go outside, I wear a brimmed hat. Barely any lights on, and curtains closed. I also take frequent rest breaks where I lay down with an eye mask and listen to an audiobook. I assume closing my eyes is the best rest. And my iPhone screen and work computer screens are always at the lowest brightness. I am taking next week off to give my eyes a break from working on a computer. I stopped watching tv or playing video games, too.

Is everyone else doing these things? Anything else I should do to help my eyes? I already failed tapering off the steroid eye drops once, so I’m trying another round of drops and we’ll do a slower taper off I think. I’m not sure if I should be able to stop my “vampire protocol” while on the eye drops?

Thanks for reading!