I went to hospital yesterday for a screening visit for a drug trial. My consultant picked up that there was something wrong with my right eye! This is new! It was sore and looking quite veiny and blood shot!
Why is it doing this?
He arranged for me to go in today and have IV methylpred? Which I've had, so I'm hoping that it will sort it out! Has anyone else had this?
Thanks Hx
What type of vasculitis do you have and where are you seen?
Hi Suzy, my consultant hasn't specified, other than saying its ANCA positive vasculitis. However my chest, ears, sinus and now eyes are affected. I'm treated at Royal Berks, Reading.
There is a page on the website about eyes and vasculitis this is the link vasculitis.org.uk/living-wi...
I have wegeners. I was seen in reading when diagnosed but moved house and now seen in Basingstoke. I'm not impressed with them.... I'm thinking of trying to ask for a change.
If you're not happy I would certainly look at moving, I'm really happy at reading, I like the consultant I see, he really listens and i have confidence in him and I trust him.
My ophthalmologist at Reading was who got me diagnosed. He was great. Also had joint clinic with rheumatology and nephrologist. They were also good. The 'system' at Reading wasn't the worst bit.
My rheumatologists at basingstoke don't compare... I've seen 3 so far. As I've generally been ok, not been an issue but I think I would like someone i can trust.
I see Dr Flossmann at Reading. I have seen him at every appointment, I haven't seen anyone else. I do have referrals to ENT, neurology and ophthalmology to look forward to over the next couple of weeks tho!
That's who I saw!
I think he's the only doctor I have ever met that I genuinely trust! I'm still under him yet actually, as yet, my kidneys seem to be the only part of me that work properly! How did you get on with him?
I think I also saw dr chan who was great. I ended up seeing some junior drs who weren't quite sure what to do. Generally I felt like I was getting the care I needed there when the consultants were involved. My only issue was in the early days, before I was diagnosed, in eye casualty!
I don't trust basingstoke at all at the moment. One consultant told me when I was rushed into a & e that she didnt know why she had been called by the drs to see me... apparently my bloods had gone crazy and I was quite ill. She didnt seem to get it.
Another consultant was fairly rude when I called recently for advice during a flare. It seems she confused me with someone else, but it was not a good call and I pity the person she thought she was talking to!
This page also tells you about ANCA associated vasculitis vasculitis.org.uk/about-vas...
Brilliant thank you! They feel much better at the moment. I hope it lasts!
I've had 5 infusions of methylpred at the same time as 40mg daily before I started to reduce the dose. Only have 5mg daily now, with MTX once a week and Rituximab annually.
I'm at the moment on.. 20mg pred daily, omelrazole, alandronic acid and seltrin with monthly Bit B12 injections. I'm hopefully *fingers crossed* going to be starting on a trial soon
I too can get Eye Problems, just to add to the 'Fun'! Hope all goes well, for you.
Belated Happy Easter HFox.
AndrewT
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