Retinal vasculitis

[Ricky1040]

Hey all. Just wondering if anyone else has this condition and what i can expect from it. Had it for around. 3 months and im on steroid treatment but doesnt seem to be working. Has anyone had treatment that has worked welll?

[aparkin]

Hi Ricky. I had retinal vasculitis. Was on steroids for 6 months and at the same time I did chemo too as my consultants (rheumatologist, neurologist and ophthalmologist) thought it was linked to my auto immune conditions.

[Ricky1040 in reply to aparkin]

Hey i have had most things ruled out through loads if tests and mine is currently idopathic. But my vison is very quickly deteriarating which is really frustrating as i cant do anything. They are now lowering my steroids as they dont seem to be helping. How bad was yours mate? Did u get it resolved with the chemo?

[Suzym2u Moderator Vasculitis UK]

Not sure if this will help but it was written by Dr Catherine Guly from the Bristol Eye Hospital. "Vasculitis and the Eyes" vasculitis.org.uk/living-wi...

best wishes

Susan

[Ricky1040]

And thankyou suzy. Had a good read and they seem to be doing all the right things with me. Jus nothing is working. I wonder if i am a candidate for the chemo treatment or is that more linked to the auto immune conditions associated sonetimes. As i have not been diagnosed with anything but retinal vasculitis despite lots of testing including bloods ct xray and mri

[Suzym2u Moderator Vasculitis UK in reply to Ricky1040]

if nothing seems to be working and things are getting worse or even if things are not improving, probably best to have some more investigations. If you have other symptoms too maybe ask for a referral to see a Rheumatologist. You can ask for a referral through your GP. Sometimes it takes a doctor (usually a Rheumatologist) to look at the overall picture not just by blood tests alone. Have you ever had a urine test or kidney function blood test?

[Ricky1040 in reply to Suzym2u]

Have had a kidney function but not urine. Seeing my eye consultant today will discuss referal with with

[Suzym2u Moderator Vasculitis UK in reply to Ricky1040]

please let us know how it goes today.

[Ricky1040]

At hospital now. Will do

[Suzym2u Moderator Vasculitis UK in reply to Ricky1040]

I found this from a previous post if it is any help Ricky ...not sure if it will be.. Susan

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"Had it for around. 3 months and im on steroid treatment but doesnt seem to be working"

Hi

Sorry for my ignorance but would you be able to clarify if you're thinking of your vision not improving or something else? or do you feel that there's no improvement in terms of other symptoms? Or are you talking about your vision not improving from the treatment?

Thank you.