Vasculitis of the eye: I have vasculitis of... - Vasculitis UK

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Vasculitis of the eye

Udupik profile image
7 Replies

I have vasculitis of the eye and have steroid implants in the eye. Now the ozurdex implant is wearing away and the oedema is back in the eye. The immunosuppressant ( metothexrate) which is I was using for 16 weeks has not managed to stop the oedema. Till ozurdex was present, oedema was at bay. Now that it has gone , the immunosuppressant was supposed to do its work and it hasn't. Any ideas on what is the way ahead ?

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Udupik profile image
Udupik
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7 Replies
Grizzly-bear profile image
Grizzly-bear

Are you on any maintenance dose of Prednisolone? I used steroid eye drops initial and am also on low dose Prednisolone and six monthly rituximab. Mine hasn’t flared again in my eye (though I get flares elsewhere - usually nose and knees).

Udupik profile image
Udupik in reply toGrizzly-bear

Thanks for your response. Do you have vasculitis of eye too ? Has riruximab helped..? yes I'm on a small dose of predisolsone.

Grizzly-bear profile image
Grizzly-bear in reply toUdupik

The eye is one of the places I have vasculitis. Mine was widespread at the time of diagnosis (eye, ears, nose, kidneys, esophagus, stomach, joints).

Because I was in kidney failure when diagnosed I was hit with a lot of treatment so hard to say what worked at getting it under control exactly but mine cleared up in my eye quite quickly with:

- Methylprednisolone via IV for 3 days

- Cyclophosphamide (1 round)

- Rituximab (two doses two weeks apart then every 6 months)

- steroid eye drops

- Maintenance dose of Prednisolone

So I can’t be sure exactly what got it under control in the first instant, but maintenance rituximab and prednisolone seems to have kept it at bay for over a year now. Haven’t had steroid eye drops in over a year.

Udupik profile image
Udupik

Ok. Good luck and thanks

Dingledaw profile image
Dingledaw

Don't know how long you've had this, but if it's recent, as in started in the last 3 years, then maybe Paxlovid after the current study is done? Eyes are an immune privileged site.

Udupik profile image
Udupik in reply toDingledaw

Yes..in past 1.5 years. Is there a link to the study that you are mentioning?

There is some argument that the uveitis could have been triggered by covid or the vaccine.

Dingledaw profile image
Dingledaw

I'm aware of the study being done but it's only just started and due to complete in a year's time. See link below. There's no mention of the eyes, but it may turn out there's viral persistence which could explain any of the sequelae My eyes keep flaring up: conjunctival no uveitis. That happens and always in conjunction with increased SOB. The eye hospital couldn't name my inflammation and said they'd not seen it before.clinicaltrials.gov/ct2/show...

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