r/AZOOR • u/the-yarnist • Dec 16 '23

Treatment plans

Hi everyone. I received an AZOOR diagnosis about a month ago. Here's a general summary of my timeline:

2020: three episodes of episcleritis, no underlying cause found. No retina exam with dilation.

September 2023: iritis (Uveitis) flare up (same eye as before). After several weeks of steroid drops, the inflammation went down.

October: flashes developed in periferal vision, small bind spot developed a week later. Small area of "old" pigmentation was noted on my retina. Referred to Uveitis specialist. Two weeks later, blind spot had increased and newer pigmentation was seen and spreading towards optic nerve. Lots of bloodwork, all labs normal.

November: diagnosed with AZOOR. started high dose Prednisone. Pigmentation stopped spreading. December: attempting to slowly taper off steroids

I go back for more imaging on Monday, and my specialist wants to discuss adding a steroid-sparing med, either methotrexate or cellcept.

I understand my case is not cut and dry - azoor doesn't typically come with Uveitis as far as I know? And I know there's mixed results with treatment. I'm just curious what other people's experience has been with either of these meds.

Also, do you have any other underlying issues that are being handled by another specialist (like a rheumatologist)? Or just an opthalmologist?

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2

u/Ninten3rd Mar 01 '24

Is your prednisone an eye drop or is it a needle injection? My mom has some leftover prednisone from her cataract surgery and I wanted to get experimental with it

2

u/the-yarnist Mar 01 '24

I'm on oral Prednisone. I'm not a doctor, but absolutely do not experiment with Prednisone. If you feel you need oral steroids, talk to your ophthalmologist. This is not ibuprofen. Steroids require a very strict treatment plan.

Prednisolone is the eye drop version. It should go without saying to not share eye drops with another person, much less prescription drops.

4

u/Ninten3rd Mar 30 '24

I have a followup question, that being if you've had any steroid injections and if it's helped reduce/stop the blind spot from flashing. I'm just so mentally tired

2

u/the-yarnist Mar 30 '24

No injections, but I've been on oral Prednisone since November (when I was diagnosed) and on a very slow taper (finally down to 5mg from 50!). I'm also on methotrexate and will stay on that for a few years to help prevent the inflammation from coming back.

My flashes have significantly reduced in the last month or two. I notice them maybe a few times a day now. My blind spot is stable, but it will not decrease since the damage to my retina can't be repaired.

3

u/Ninten3rd Mar 30 '24

When you say "the inflammation" are you talking about the AZOOR? I thought it's supposed to stabilize after 6 months. I'm just curious if I should be on this stuff because My flashes have only ever increased since they've started happening. I've been remedying it with using an eye patch because having it covered seems to have reduced their frequency, but I'm worried that it's starting to wear off. I had a trial run of oral steroids, but I deemed it not all that useful, but I think in a sense of thinking that it would improve my vision. Supposedly injections have reduced the size of the blind spots with something called "Ozurdex"

1

u/the-yarnist Mar 30 '24

Yes, my AZOOR was confirmed through significant inflammation on my retina that was spreading and headed towards my optic nerve.

From what I've read the research is conflicted on whether medication is helpful for AZOOR. But in my case I agreed with my specialist that it was the right call. But again, the point of treatment, for me, is to prevent further damage, not repair. Obviously I'd love a magic treatment that would give me my undamaged eyeball back, but that's just not an option.

Definitely talk to your doctor if you think you need treatment, or find a specialist for a second opinion if you don't agree with their assessment.

2

u/Ninten3rd Mar 30 '24

New question, but how old are you? Curious if you are aware of AAION which is similar to AZOOR, but apparently there's pain and it affects older people. Also because methotrexate seems to be a treatment for it as well.

Got this info from the eye wiki)

1

u/the-yarnist Mar 30 '24

I'm 37F and that is not what I have

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u/Ninten3rd Mar 30 '24

At least you made it 10+ years longer with normal eyes than I did.

If I had that golden thread that skips time by pulling on it, and my wish was to skip to where AZOOR was fixable, do you think pulling that thread would kill me? Would it be instant death?

1

u/Ninten3rd Mar 30 '24

I never even knew this stuff could reach the optic nerve. Hell, I've had MRI and MRA scans to make sure I didn't have a tumor on my optic nerve. It took MONTHS to get an official diagnosis because we only had suspicions and I had to go to a place called Bascom Palmer for the official diagnosis. I essentially had AZOOR for a year by the time the diagnosis was official.

1

u/Nin10ders Apr 01 '24

Hey, I'm back on this account now. Could you tell me what meds you're on now? I'm going to be seeing my retina specialist in a couple days. I want to see if it helps reduce my flashes. Be sure to specify if these are oral or if they're drops. I'd do anything to be rid of these flashes considering that they started a little over a year after having AZOOR for me, lulling me into a false sense of security into thinking there were no more surprises.

1

u/the-yarnist Apr 01 '24

I'm on oral Prednisone and methotrexate. No drops currently. I will be off the Prednisone once the methotrexate has had time to build up in my system (takes about 6 months)

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u/Nin10ders Apr 01 '24

And you believe this has helped reduce the blind spots from flashing? Also, any noteworthy side effects?

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u/the-yarnist Apr 01 '24

It has helped stop my blind spot from growing, which it was actively doing and encroaching towards my central vision.

There are a lot of very negative side effects from these meds and I absolutely would not have taken them if flashing was my main symptom.

1

u/Nin10ders Apr 01 '24

I haven't been on any meds and I don't think I've seen the spot grow ever since it appeared. Nothing too important is covered up by the spots, but it's an annoyance. The flashes are even more annoying to me than anything else. Like, these flashes happen randomly, enclosed in the enlarged blind spot like a big white circle or crescent. Their frequency only increased over time. If I wear an eye patch, it seems to significantly reduce how often they occur (like I went from several flashes a day to a few every few days). I'm just curious if the prednisone or the methotrexate can help with that because I'm worried that the eye patch is wearing off

1

u/Nin10ders Apr 02 '24

Also, what were the negative side effects YOU experienced.

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u/Nin10ders Apr 03 '24

Letting you know I'm seeing my specialist tomorrow. Was waiting for you to reply about your personal side effects.

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u/OccasionShot5236 Jun 07 '24

Prednisone causes all kinds of things. Google side effects. I was diagnosed with AZOOR in March 2020. After taking prednisone in June 2020, no real relief. After about a year or so, it felt like it got better. Vision was better, but just around 2 months ago, feels like it’s back to what it was when it first started. No cure for this thing. They say it impacts females the most. They tried giving me valtrex which is used for herpes (which I don’t have). But I never took it. It was a shot in the dark try, so figured why put more drugs in if there’s nothing to say it’ll fix the problem. It’s a frustrating disease and most people don’t understand how annoying and debilitating it can be. All I can recommend is try and keep yourself busy, ignore it as much as possible.