New to this site, with so many questions! Any help would be very gratefully received.

[roobarb]

I've had lupus for many years, with Raynaud's all my life. For the last few years I've had reddish-purple dots coming & going on my fingers & toes, but never there when I visit the rheumy to be able to show them. I now know they are petechial haemorrhages.

They were there for my last visit in December & she said they were vasculitic lesions. She told me to let her know if I got any sores on my fingers tips, & hey presto within 2 weeks I had them on fingers tips & underside of toes. So she upped my prednisolone dose slightly.

At the same time I had protein in urine, so had an urgent referral to a nephrologist. My initial tests seem to be coming back OK, so hopefully no treatment will be needed for this at present.

Can I expect a formal diagnosis of the type of vasculitis from my rheumy at my next visit? Will this involve more tests? Or is it a wait & see situation, as happened with my lupus?

Does vasculitis tend to follow a fluctuating pattern like lupus?

Will the sores improve as the weather warms up? If it ever does!

Could vasculitis be contributing to difficulty concentrating? I can't read a book or play the piano any more, which had become my main hobbies since lupus restricted my physical activity.

And finally, is there a vasculitis support group in the North West of England? I live in Chester.

Many thanks in advance for your answers. X

[RichardE Volunteer]

Hi. I have HUV (Hypocomplementemic Urticaria Vasculitis) which is very similar to Lupus. But your symptoms sound different so I wouldn't assume you have the same. Hopefully your consultant will be able to give you more than a general diagnosis of Vasculitis but if it is purely secondary to Lupus then I'm not sure if you'll get a definitive name.

If you have a look at our website you'll see that there are currently about 20 recognised forms of Vasculitis, all with differing symptoms and problems. Many are hard to diagnose and may well require further investigations, tests and biopsies to confirm a diagnosis. The web address is here :

vasculitis.org.uk/

Many of us with Vasculitis can have protein (and blood) detected in our urine which can indicate kidney involvement. Low levels are not necessarily of great concern but can be another symptom that requires investigation, possibly by way of a kidney biopsy. But from what you say they are not overly concerned with your kidney function.

Vasculitis can indeed flare and fluctuate. Many of us have their disease controlled and go into a drug induced remission that can last many years. Some even manage to reduce their medication. But everyone is different and the disease may return and some people struggle to control it at all.

Some symptoms may improve with the warmer weather but again everyone is different.

Fatigue can be a problem for many people with Vasculitis if that's what's causing you problems with concentration. But do mention this to your consultant since in very rare cases there can be central nervous system involvement with Vasculitis.

Sorry, there's an awful lot of information here. Do remember that everyone's disease is different and you most likely will not develop many of the symptoms that you might hear about.

Finally we have a support group in Merseyside and a contact person in North Wales that might not be too far from you. We have a list of support groups here :

vasculitis.org.uk/about/fin...

All the best,

Richard.

[roobarb in reply to RichardE]

Thank your Richard for your very comprehensive answer.

The website is great, but difficult for me to get through all the info at the moment with my concentration levels being poor. I know it's there when I need it though.

Hopefully I will gain some insight from the posts & questions on here.

Best wishes. X

[RichardE Volunteer in reply to roobarb]

You're very welcome. Just shout if you come up with any questions and we'll do our best to help.

Regards,

Richard.

[hamble99b Volunteer]

hi roobarb, welcome.

we meet at the Liverpool Royal Hospital. I'm not sure when the next one is.

have you looked at the route map to vasculitis book? it's available as a download.

regards,

sandra.

[roobarb in reply to hamble99b]

Hi Sandra, & thankyou for the information. Are meeting dates posted on here?

[hamble99b Volunteer in reply to roobarb]

yes. and I think it's Susan from Chester and Quinnster who organise it.

[SusanCh]

Hi I have Vasculitisv(WG) and I live in Chester. I have treatment locally as well as Addenbrookes and London. I am happy to contact you privately and help you if I can.

I am also support group person for Chester and area

Sue

[roobarb in reply to SusanCh]

Hi Susan

It's great to know there is someone near by I can get in touch with. Are you treated by a rhuematolgist for your condition, or is there a different sort of specialist for this?

As Richard has said, my case will probably be classed as secondary to lupus. So I'm not expecting a referral to anyone else. But it would be nice to know, in case things change in the future.

All the best. X