Uveitis

[GirlfromTennessee]

Anyone had Uveitis? I’ve had for about 3 weeks & not getting much better.

I’m on steroids eye drops & have received an IV of steroids as well.

[MaryF Administrator]

HI there, poor you, it sounds very uncomfortable. I have read of others on here having this and it is connected with Hughes Syndrome/APS, quite a few papers written on it. I hope your consultant/GP is monitoring your progress and that the IV sterioids have helped a bit? MaryF

[GirlfromTennessee in reply to MaryF]

Yes have been under the care of my Rheumatologist & my Eye Dr. They both agreed that I gave Uveitis & Scleritis. Will be seeing an Ophthalmologist early next month. The Uveitis I was told has cleared but not Scleritis.

[GirlfromTennessee in reply to GirlfromTennessee]

I’m also on a suppressant called Azathioprine.

[Ladydale in reply to GirlfromTennessee]

Hi I have APS and the gene for uveitis.I have had so many steroid eye drops they caused cataracts and had a replacement lens in my right eye last year. I have had Scleritis and Iritis too. Scleritis treatment is oral steroids as eye drops don't clear Scleritis. If you have the gene for uveitis you will continue to get flare upsI have had it for three years and so many flare ups. My consultant suggested 2 eye drops a day to keep it at bay but it may cause my other cataract to grow in my left eye. I also have the gene for reactive arthritis which are all autoimmune disorders including APS

[GirlfromTennessee in reply to Ladydale]

Oh geez!! I will be starting oral next week, you are correct eye drops are not helping!!

[LindaMorrell in reply to GirlfromTennessee]

Good morning GirlfromTennessee,

I started with eye issues 1991, they did not link it to any auto immune at first.

I had Iritis and Uvitus still have the notes. I can copy and send when I go home Tuesday. I saw a brilliant Eye surgeon who said it just happens. ( later found out I had Systemic Lupus then APS and now MS 2022). Obviously it was the main thing that got me questioning when I couldn't see well with my right eye, with the help of my GP all my other issues. which at the time were minor, we made more investigations as to why these eye issues started.

I was immediately given orbital floor injections in the back fo the eye. "Steroids". In couple of hours my eye started to clear from the huge amount of floaters and debris that was in the vitreous humour. These injections were every day, every 2nd day twice a week then every few weeks to every month.

Once the other specialists. found out I had systemic Lupus and minor issues in my heart, lungs, etc.... I was taken into hospital for 10 days to continue the orbital injections and oral steroids. This was like magic. I healed extremely well with only minor issues little bit of scaring at the back of the eye from the inflammation activity in the eye. Years after a cataract appeared and was removed, with minimal invasion because of fear of starting my SLE again. I was good for a long time but then was diagnosed with APS 30 years later then MS.

Few medical issues through my life but all good. Deal with issues as they arise.

If they haven't suggested injections in the back of eye. I suggest you maybe should mention it. It isn't nice but it works. as the steroids go right to where they are needed. It saved my sight

Good luck with what ever you decide. just make sure you get the best Doctors you can find

They make all the difference to your future

Kind regards. Linda Australia

[GirlfromTennessee in reply to LindaMorrell]

Goodness Ms Linda you have certainly been through the mill!!! I’m hoping to start the oral treatment first & Pray it works for me!!! Was the Lupus & MS all tied i tighter at once??? I see the ophthalmologist on May 3rd. We will see his thoughts…

[Ladydale in reply to GirlfromTennessee]

Good luck

[lupus-support1 Administrator]

Are you seeing an ophthalmologist ie a doctor who specializes in eyes? If so, you need to see them again.

With good wishes,

Ros

[GirlfromTennessee in reply to lupus-support1]

Yes will be seeing early next month.

[lupus-support1 Administrator in reply to GirlfromTennessee]

I wouldn’t wait. You need an urgent appointment.

[luisal]

Hi, very sorry for your new dx. I ´ve been diagnosed with APS (2 +) 15 years ago. Then diagnosed with uveitis some 10 years ago and didn´t improve with Prednosine, Azathioprine. It turned out it wasn´t uveitis (I´ve consulted US #1 Specialist in Cambridge, MA). But I continued suffering pain in the eyes. Finally after going through hyperthyroidism Graves Disease is the last diagnose from an Ophthalmologist/Endocrinologist. My advice will be to check with an specialist in these type of eye condition and not a regular ophthalmologist. Hoping this helps and all the best.

[GirlfromTennessee in reply to luisal]

Thank You, I’m being treated currently with my Rhemy, My regular eye doc, PC Dr & will be seeing an Ophthalmologist next week.

[GinaD]

It was my wonderful ophthalmologist who first suspected I might have APS ( he didn't like the look of blood vessels in my retina) who put me on omega 3pills as well as omega 3 eyedrops. I have been on this regimen for years now and have few optical issues as I age. Those cataracts that were first seen years ago have even (shrunk? or moved?) improved so I can drive at night again with no more headlight glare issues then I had in high school. I know omega supplements can effect INR levels, but now those pills are just part of my regimen. I'm sorry I have no patient hints for you, G f TN, but, those of us on that APS aging road might bring this up with treating eye doctors..

[GirlfromTennessee]

Thanks Gina! I will mention the Omega3 to my Ophthalmologist next week @ my Appt. Glad you are doing well!!

[AZTerritory]

Hi, just joined and saw your post. I have had anterior uveitis on and off for about 16 years, finally experiended a bad flare in 2021 that did not respond to PredForte steroid drops, now on Methotrexate injections weekly for about 6 months, seems to be holding progression at bay. Humira is also used with uveitis per my rheum doc and my ophthalmologist, but insurance makes you try MTX first (icky side effects, may ask to be considered for that.) I hope you are doing well, the photophobia and pain gets old really really fast!