Uveitis treatment opinion please

[Udupik]

I have been an intermediate uveitis patient ( vasculitis of the eye) for about 18 months now. Have had several steroid implants in the eye and has been on methotexrate injections for 6 months now. But the oedema due to vasculitis is coming back repeatedly. So seems like I have 2 options now in terms of immunosuppressants.

1. Take 2 g of mycophenolate ( daily)

Or

2. Move to biologicals

Based on your individual experience, which one would you advise ?

I'm favoring biologicals more as mycophenolate is the same family as methotexrate( although supposed to be stronger than MTX) , which hasn't worked for me.

Many thanks

[Grizzly-bear]

I had a different induction experience to you so my experiences aren’t totally comparable, but my maintenance has been rituximab and low dose Prednisolone and the vasculitis in my eye hasn’t returned. It has been 18 months clear on rituximab.

[AmyS1]

Biologics have been very good

[thekeys46]

Hi, I have scleritis. The only thing that works for me is the biologic Humira.

Every time I have had to come off it the scleritis returns.

Xx

[tisme2]

Hi. I've had a very good response to my GPA I've been on Mycophenolate now for last 9 years and I am now only taking one 250mg pill in the morning and one evening time without any issues so far. It's worked for me, but I can't advise which would be best for you I'm sorry, that advice you need from your doctor. I've was never given a choice it was chosen for me by my Doctor and Its worked for me. All the best to you, and sorry I have'nt been more helpful.

[ZiggyDiego]

My GPA started with uveitis among other things. Because I had lung involvement as well I started on cyclophosphamide which helped the uveitis. After that I had azathioprine, which I couldn't get on with, so then I had mycophenolate. I relapsed on that with scleritis which was much more painful than uveitis. I went onto rituximab at the end of 2017. Since then I've had a flare of the scleritis in 2020 but nothing since then. Rituximab has been amazing and I wouldn't be without it every 5-6 months. I did have glaucoma from the steroids as well - rituximab has enabled me to come off the steroids, so my pressures are in normal range again now without eye drops. Hope it works for you.

[Udupik]

Thanks everyone for your inputs. Quite helpful . One more question. Is there any test which can tell the Dr what kind of immunosuppressants ( DMARD/biologics etc ) will work rather than navigating through the entire spectrum of options available, before finding the one that works for you?.

[ludo]

Mycophenolate worked for me and got me into long term remission but everyone is different. Good luck I hope whatever you have brings you into remission

[Udupik in reply to ludo]

Thanks Ludo. Did you also have uveitis for which Mycophenolate worked?

[ludo]

No, I didnt. It affected my sinuses and lungs. Good point.

[Alicewebb]

hi hun.

I’ve been on mycophenalate now for years and years but I’ve recently been in hospital for 5 months 😢. Be aware to try to stay away from infections as it really really lowers your immune system. I caught 6 infections in that time so the drs took me off it and my Vasculitis has come back with a vengeance!!! I had a severe reaction to a medication starting with Aza it caused severe faecal diarrhoea and caused a bowel blockage!! NOT GREAT!!! ANOTHER surgery because of the Dreaded Vasculitis!!! Good luck though with whatever you decide xx

[Udupik in reply to Alicewebb]

Hope you feel better soon Alicewebb