hello everyone

[eileenv]

Hi Jack
I live in the Romford area, i wonder when i speak to the consultant will he refer me on to somewhere else, can you have a high pr3 without a pos ANCA? are they two seperate bloods tests?. I'ts funny i mentioned vasculitis to my dermatoligist when i saw her because when i take a plaster off the area straighy away comes up but she said no it's just where the veins are fragile? anyway i would be grateful for any advice.
Love Eileen

[eileenv]

Hi Janw
Gosh your pr3 was high, how long have you been diagnosed, what are your symptoms sorry for nosey, allalong i thougt i had SLE and now may have wegeners which seems it can be very serious indeed.

[JanW]

I was diagnosed in January, although I have probably had this at least since 2005, when I noticed shortness of breath and was misdiagnosed with asthma.

My symptoms are very mild indeed, especially compared to many on the forum, although I did have surgery to open my windpipe, and I do have a saddle nose deformity on my face. My doc found no granulomas anywhere, and the biopsy wasn't positive for WG (I mentioned the biopsy in my last post in this thread). My main problem is and ankle 'injury' that won't heal, that may or may not be related to WG, and some foot pain on the other foot (which could be WG or caused by guarding the injured ankle). I have almost no nasal inflammation at this point, and my throat is fine after the surgery (I will likely have to have it done again). I am on 3 mg weekly of mtx, just to see if its tolerable for me (initially it spiked my liver enzymes and my rheumy pulled me off it pre-surgery). I see my rheumy next week. But I feel great, really, except for my feet.

[Col 23]

glad to hear your feeling great Jan.
cheers Col 23

[Col 23]

How are you going eileenv
cheers Col 23

[eileenv]

Hi janw,
Was you diagnosed with wegener's because of the saddle nose deformity? did you have a positive anca? I hope your foot gets better soon Jan, i'm waiting for my appointment with the ent to come through.

[eileenv]

HO Col23,
I'm not doing to badly, jiont pain and fatigue are my main problems at the moment just waiting for my ent appointment to come through. I se your in Australia where abouts?. My sister is in Adelaide, how long have you been diagnosed i haven't yet had a firm diagnoses.

[Col 23]

Hi Eileenv
Im in Perth Western Australia. Dx in Dec 2009. Still trying to get my head around it.
RA, Lungs, eyes, fatigue, head, skin but lucky no kidney involvement at this stage.
Wish you well at the ENT appointment.
Col 23

[eileenv]

Hi Col24

I was wondering how wegeners was effecting your skin? is ju st itchy or have you got leisions why i'm asking is that my rheumy reffered me to a dermatoligist for an opinion and she diagnosed dicoid ezcema which i don't think it was.

[Col 23]

Hi Ev
Skin very dry, soles and palms of feet and hands dry and puscular spots at times. (Always was told it was psoriasis) rash under one armpit recently that looks like heat rash with lots of spots, dont know what that one is about only came up 3 weeks ago. Doesnt hurt just looks unsightly.
cheers Col 23