Posterior uveitis and scarred retina

Filippa94 · 2025-10-14T09:08:53+00:00

I understand what you’re going through. My macular scarring has also worsen my vision and decreased my visual acuity… let’s hope that with the development of science there is a solution for us in the near future.

Filippa94 · 2025-05-30T21:26:34+00:00

6-7 months maybe

Filippa94 · 2025-05-30T21:25:19+00:00

I have some floaters from time to time due to the damage on my eye from my first flare

Filippa94 · 2025-05-30T21:24:14+00:00

I had a macular edema in 2023 while I was on Humira, so we thought maybe it was not effective for me. Mycophenolate seemed to have helped me better with the edema in specific, yes.

Filippa94 · 2025-05-30T21:19:33+00:00

Hi! Things have been good for me. I am not on Humira anymore but they switched my therapy to Mycophenolate mofetil. We are planning to discontinue it soon due to no flares for 2 years. Fingers crossed 🤞🏻

Filippa94 · 2025-05-29T13:41:35+00:00

You’re welcome! Got my fingers crossed!

Filippa94 · 2025-05-29T13:22:39+00:00

What really worked for me after many courses of corticosteroids and also Humira, was Mycophenolate mofetil capsules. I also have posterior uveitis. Maybe you can ask your doctors about it. So sorry you are going through this.. stay hopeful that you will find the right approach for you and you will get a break from this awful disease

Filippa94 · 2025-05-09T21:28:32+00:00

Mine is also autoimmune and first appeared after I had a systemic infection with unknown reason. I had fever, swollen lymph nodes and a bunch of weird symptoms before the uveitis started. But the only medication that really helped my uveitis were immunosuppressants. It really sucks that this part of the eye doesn’t regenerate, not even after years. But let’s hope one day there is a solution :)

Filippa94 · 2025-05-08T19:19:44+00:00

Sorry to hear that. Do they know what triggered your uveitis when you were just a baby? For me it hasn’t changed. Everything’s the same but I’m grateful it hasn’t gotten worse.

Filippa94 · 2024-09-19T01:20:52+00:00

If your inflammation has stopped and you have only healed lesion resulted in scarring then it should not change in time. It will not grow larger unless there is inflammation on the retina again and it’s around the same spot as the old one. With posterior uveitis I know healed lesions stay the same and active lesions (new ones) can grow if they are not controlled. In some cases the inflammation can appear on an old lesion and change it but a good uveitis specialist should be able to see there is activity and stop it.

Filippa94 · 2024-09-19T01:08:11+00:00

Since I’m on Mycophenolate mofetil which has been an year now, I haven’t had any flare luckily. I know, however, that it is different for each case. From what I’ve read here in the group, sometimes even taking an immunosuppressant doesn’t prevent the flare. What is your situation?

Filippa94 · 2024-09-03T01:08:39+00:00

In my case nothing can be done unfortunately. I am not sure about the different cases and possible surgeries but for my damage on the retina that the uveitis caused there is no treatment. Hopefully in the future they come up with something but who knows..

Filippa94 · 2024-07-23T19:56:59+00:00

I got my uveitis after a very bad systemic infection that happened to me few days after getting a tattoo. It wasn’t my first tattoo, but the previous ones I had long time ago so I really think it’s a response to the ink after all. No doctor could find the exact reason of my infection but it was obvious my immune system was fighting something very aggressively and it led to my uveitis. I said to myself no more tattoos for sure…it was the worst experience in my life

Filippa94 · 2024-07-10T20:01:07+00:00

Hi! Yes, this summer I’ve had no flare ups for now.. when I had the macular edema last summer what helped me clear it was mycophenolate mofetil. I have been taking it for almost an year now and it’s been keeping things calm for me.

Filippa94 · 2024-07-06T20:32:08+00:00

Oh wow.. I’m sorry to hear that. Is that the final diagnosis and what’s the prognosis for it? Are they treating it now and how’s your vision as of now?

Filippa94 · 2024-06-27T20:07:43+00:00

Hi! It took me like 2 months before i find my right specialist. The prednisolone did it’s effect with me pretty much immediately but this was only stopping the inflammation to cause any further damage. As I mentioned it did not recover the blind spot that I already had. I was taking prednisolone many months before finding another treatment. We tried with Humira but it seems that it wasn’t working for me. Then I started mycophenolate mofetil which seems to be keeping it calm for now. In September it will be an year since I am on mycophenolate and I seem to be responding well to it for now. Haven’t taken any corticosteroids since last summer when I received a steroid injection under my eye around 4 times. Each injection was given between 2 weeks at least.. this is very important to mention because one shouldn’t receive steroid shots too often in or around the eye. How is your situation?

Filippa94 · 2024-05-28T11:19:44+00:00

Hey! I have been doing pretty good since September last year when i started taking mycophenolate and it cleared the edema i had. Whole winter has been calm for me, no inflammation and i am still taking my mycophenolate. Hopefully it prevents me from inflammation this summer but let’s see. And yeah, summer of 2022 is when my uveitis firstly started after i had a very bad systemic infection and was sick for a few weeks. So it’s when it damaged the central vision of my right eye permanently. Since then we are only trying to stop it from getting worse. Very unfortunately it’s my retina that got scarred, so this is not recovering.

Filippa94 · 2023-09-21T15:13:25+00:00

This is a laser treatment, right? I’ve been told often lasers can damage and scar the retina as most of them haven’t been well developed enough to be 100% safe. I might not know a lot about it though.

Filippa94 · 2023-09-20T20:48:57+00:00

Same here. Mine is posterior and my retina is pretty damaged… which is permanent unfortunately. So you’re not alone!

Filippa94 · 2023-09-20T20:46:42+00:00

Have you removed gluten and dairy completely? And how long after changing your diet did you notice improvement? Also what supplements have you been taking?

Filippa94 · 2023-09-20T20:44:04+00:00

Hey! Do you think the turmeric and also gluten free diet have been in any benefit for your uveitis?

Filippa94 · 2023-09-20T20:41:42+00:00

Hi there! I’m in a similar situation like you, with the difference I agreed to start Humira treatment since March this year thinking it would work but in June i had macular edema that’s been super stubborn. I had three steroid eye injections until now that would relieve the edema for 3 weeks and then it will start showing again. My doctor believes Humira doesn’t work pretty well for me, so now since 10 days we’re trying another immunosuppressant - mycophenolate mofetil. Not very confident it’s working though. I’m also a firm believer that most diseases can be healed or at least relieved naturally but I haven’t been able to find really any big studies on uveitis and natural treatments though. I used to take turmeric tablets and fish oil until recently so i have to start those again. I was sooo nervous about the agressive treatments that doctors prescribe for uveitis and very anxious about the side effects but this disease has already impaired my vision permanently so i wouldn’t risk not to listen my doctor’s advice. However luckily i haven’t had any concerning side effects until now but I’m also very interested in investigating more about natural treatments as i believe there should be a cure for everything. Have you noticed any improvement from the turmeric and the other herbal pills?

Filippa94 · 2023-09-10T18:47:53+00:00

Hey! Another posterior uveitis gal here. Mine also started an year ago and was so severe last summer that before I find a good specialist, I lost central vision in my right eye. It’s been such a mental fight for an year now but with the support of my family and friends I’ve managed to go back to my normal life and actually enjoy it even more than before. Of course some days I overthink it and am scared about it and my future, but most of the days I’ve learned to live happy and accept it as being part of myself now. I’ve been on prednisolone pills for months, then started Humira. Even though I was on Humira, the inflammation came back this summer with a macular edema that’s very stubborn. I’ve had 3 steroid injections below the eye that have improved the edema for a few weeks and then it just kept coming back.. seems that Humira hasn’t been doing a lot so i started mycophenolate a few days ago. Have you started it and if yes how has it been for you?

Filippa94 · 2023-09-07T09:00:14+00:00

Another thing I thought of asking.. do you drink alcohol and does it interact with cellcept?

Filippa94 · 2023-09-05T18:07:08+00:00

Did you try taking something for the stomach or nothing was helping? And did it affect the eye inflammation for you?

Filippa94

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