Recently diagnosed with Leukocytoclastic vasculitis via skin biopsy had 1st meeting with dermatologist who has now taken bloods to see if i

[nesbitt]

am ANCA positive or negative, then will use those results to determine any treatment i might have, also commented my R factor was raised from other bloods, am i right in thinking if it's positive it means i have something else going on too & if negative it's just skin affected?

[John_Mills Volunteer]

If only it was that simple! LCV is a feature of several types of systemic vasculitis. It can sometimes be a stand alone disease. ANCA results are only a guide, not totally reliable. I'm not familiar with "R factor" - is that Rhumatid factor?

Best Wishes - John

[John_Mills Volunteer in reply to John_Mills]

Should read Rheumatoid factor of course.

[nesbitt in reply to John_Mills]

Thanks for reply John, yes was told the rheumatoid factor was higher than should be!? So LCV is the start of finding out another vasculitis i most likely have? hope they don't hang around with appointments then as i am as yet on no medication it's taken such a long time to get LCV diagnosed.

[Phill66dirt]

Hi Nesbit hope the best for u keep following up as drs recommend. Keeps u running at times and lots of blood work. My ANCA was very high. Meds brought them down but as I was tapering from 60m of steroids a day I had a flair up without labs going up??? Dr said fire can be out but ambers can still be there so dr raised meds back up. As John said systemis vasculitus can effect so many different areas. So that means different symptoms.

[John_Mills Volunteer]

I like that - "fire is out but the embers can still be there"! It is very true.

Vasculitis is a rare and very variable & complex disease. So it's best if you can be seen by someone with lots of experience of vasculitis - to start with, at least. Doctors in local hospitals only rarely have that degree of knowledge & expertise.

John

[nesbitt in reply to John_Mills]

Seems i've got a long road ahead of me, i just received my diagnosis through the post, that's how i found Vasculitis UK & this site there's a lot to learn but am slowly trying to work my way through things, will have a huge long list of questions when i next get to see a consultant, in the mean time you guy's are great for helping!

[Stardustgirl]

Hi Nesbitt, I too have just been diagnosed with this after a biopsy done on my leg. As you say, a diagnosis is such a relief but trying to find out the next steps is proving difficult here too! I think also finding a cause to it would put my mind at rest also, but I've been told this probably isn't going to happen. I've had it since June and been off work for the past couple of months feeling unwell. I also suffer with angiodema which means my face and feet randomly swell up also. It's such an unpredictable 'illness' and is taking some getting used too. I feel like I've been on every medication under the sun! The next step is immunosuppressants which I'm not liking the sound of... Are you finding anything helps you?? Do they have any idea what started yours? Do you also suffer bruising after the rash goes? Sorry for all the questions, just never talked to anyone suffering from it before Its funny that six months ago what I thought was an allergy to washing powder has now turned out to be this!

[nesbitt in reply to Stardustgirl]

Hello Stardustgirl, I'm in limbo right now waiting for more results (ANCA) they said up to 6 weeks for them? I started about 6 years ago with real bad rashes on my lower legs after any form of exercise even a long walk will set it off & i think the sun, although i am beginning to think it's the heat (from exercise & sun) the rash burns real bad, looks awful like I've had boiling water poured onto my legs, & when it eventually fades (up to a week) it leaves behind discolouration, also have painful joints mainly knee & ankle, & am very breathless. I haven't taken anything just told to try antihistamines when i get the next flare up whilst we wait for results. I do hope they can sort you out with something that helps & can make you feel a bit better. It's a bizarre illness that's for sure, i am finding this site brilliant for both no-longer feeling alone & misunderstood & of course the wealth of information, i read a little every day & am slowly educating myself as much as is possible. I had my worst attack which lead to the diagnosis after i started a new job, was on my feet walking around all day after 6th day ended up in hospital very bad painful rash, high temp, very high blood pressure & worryingly fast heart rate, felt terrible, i had to leave job no sooner than I'd started am now claiming ESA & not sure where to go from here please keep me up to date with your progress!

[Stardustgirl in reply to nesbitt]

Thats so interesting as my flare up really happened after a promotion at work and ultimately my level of stress was at a much higher peak than before, and the doctors weren't sure if this was related (hence my being off work). I guess that kind of links to your situation of a new job too... I think the heat does play a part, I know that my nightly bath has been put on hold as I can't bear the heat on my skin. I have tried medication colchicine, dapsone and now sulfalazine and not to mention endless steroids which come with their own undesirable side effects. May I ask your age? Do you have any previous history of illness? Reason I ask is I had swine flu a couple of years back, and since been given the tamiflu injection, my health has deteriorated significantly. This site is a fantastic support and like you I am learning as I go where abouts in the he country are you based?? I hope you begin to get some help for your situation soon. Definitely keep in touch, I would be so Int erected to see how we get on!

[nesbitt in reply to Stardustgirl]

I am 45 now, had my first symptoms (although i didn't realise at the time) when i was 39. I had a skin biopsy in 2012 but i didn't have the active rash at the time just the scarring it leaves behind, it showed inflammation disease but nothing further that's when the Rheumatologist referred me to the Dermatologist who gave me cream for dry skin! I have recently been diagnosed with IBS no idea if this is a common link or not. I also have random pains in my stomach like really sore tender area's for no apparent reason not sure if this is anything to do with it or not! I've never had the flu jab, but think it's advised for vasculitis patients, hard to work out sometimes if thing's are going to help or hinder I am in Cumbria, Lake District, where are you?