Ocular Sarcoidosis

[Mikki]

I have been having problems with my eye and yesterday the Doctor at the Royal Free Hospital London thinks it maybe connected to the Vasculitis that I have had for the past six years.

Has anyone had this Ocular Sarcoidosis before with vasculitis or know of anyone that has had it.

Thanks Michele

[jgold]

Can't help directly with your question, but who do you see at the Royal Free?

[Suzym2u Moderator Vasculitis UK]

There have been articles written about ocular sarcoidosis and vasculitis In one report, the authors describe two patients with multi-systemic sarcoidosis and refractory retinal vasculitis who experienced an excellent response to infliximab. Who do you see at Liverpool? link.springer.com/article/1...

[gibson100]

I have MPA and have been under the (excellent) care of Prof.ALan Salama and Sally Hamour at the Royal Free.Although their Vasculitis cliniic is within the nephrology dept. I have found them to be excellent with other non-kidney problems related to Vasculitis.

YOu don't make it clear if you are under their care at the RF.If not you should get to see them asap.

[jgold]

Like "gibson100" I am seen by Alan Salama and Sally Hamour at the Royal Free main site at Hampstead.

If you are not already seeing them, I suggest you seek a referral as soon as possible.

[Mikki]

Hi and thank you for your replies I am seeing Mr Henderson and Miss Forbes at Royal Free. This has all occurred after my cataracts were done. I attend Addenbrookes vasculitis clinic, and I have a referral letter for an ocular specialist there this coming Friday.

[jgold]

I understand from reading this website that Addenbrookes are very good for vasculitis, so if you are happy with the care they are giving you then that's fine.

However the advice given to me by Prof Salama and Dr Hamour at the Royal Free is that if I have any ailment that either seems potentially serious or looks as if the vasculitis is flaring up (e.g a rash) then I should tell one of them quickly - because if it IS the vasculitis that is causing a problem then they want to stamp on it immediately. Alternatively if the problem is serious and is possibly a result of the immune system suppression then they will consider temporarily reducing my azathioprine and / or prednisolone.

On this basis I would recommend that you e-mail your eye photo to your Addenbrokes vasculitis specialist, explain all that you have said on this website (perhaps include the link healthunlocked.com/vasculit... ) and ask if they can see you whilst you are there on Friday to see the ocular specialist.