Just diagnosed

[XliddybX]

I everyone I had been diagnosed with lupus SLE for two years and have just been told I do not have lupus but vasculitus. Please could someone explain what it is to me in no medical lingo . Xxx

[RichardE Volunteer]

Hi,

Vasculitis is a similar disease to Lupus, which might be why your clinicians have changed your diagnosis. Like Lupus, it's an autoimmune disease and basically it causes inflammation of the blood vessels. This can affect and cause problems with various parts of the body including the skin, joints, kidneys and lungs.

There are nearly 20 different types of Vasculitis and they can be quite different depending upon what blood vessels are affected. Has your clinician told you that you have a specific type of Vasculitis ?

We have a website with a lot more information that might be useful to you :

vasculitis.org.uk/about-vas...

The website may raise more questions for you so please feel free to ask away on here and I'm sure someone will find an answer for you.

Vasculitis UK also produce a half yearly magazine and shorter e-News mailshots for our members. The magazine contains articles on Vasculitis, written in plain English by clinicians as well as VUK trustees and members, personal stories and updates on events and fundraising activities.

If you'd like to receive these please send your address and contact details to [e-mail]

Finally, just bear in mind that everyone with Vasculitis has slightly different symptoms and problems and the disease can vary in severity depending upon type and whether you get the appropriate treatment in good time.

All the best,

Richard.

[AllyGY2013]

Hi,

Like you, I was diagnosed as having Lupus, having been tolded originally that I had rheumatoid arthritis, then the rheumatologist changed the diagnosis in January to Vasculitis, I now have a working diagnosis of Wegeners (October). It seems to be slow process to detect and then define which type of vasculitis it is.

I found the route map on the vasculitis.org.uk website very helpful as well as the members of this site; I read the posts of others because I may not be able to contribute on a particular subject but it makes me aware of symptoms and side effects etc that I need to watch out for.

We are all individuals but there are similarities.

Welcome to the group!

I hope now that you have a starting diagnosis that you will get the right treatment to help you.

Best wishes,

Ally

[Sarahjh2004]

Hi sle is very similar to HUVs because they share the antibody marker of anti c1q antibodies. Richard and I both have been diagnosed south this do please feel free to ask me and i am sure Richard any questions. X

[XliddybX in reply to Sarahjh2004]

How do I know which type I have without asking my specialist.

[AndrewT]

As has been mentioned above; weather you have 'lupus' or 'vasculitis' is like arguing weather you have 'winter vomiting' or 'food poisoning'. At the end of the day does it actually matter a er, erm fig! Both are autoimmune conditions and, as such, are quite (even very) similar, which is probably why you were mis-diagnosed in the first instance. Equally the treatments, i.e. Immuno-Suppressant Therapy, is also much the same. Basically you were in the right 'ball park', from the start, so don't worry that the exact diagnosis has been 'tweaked' a little.

I hope this is of some help, to you, if only to reassure you that your treatment was, more or less, right to begin with.

Best wishes

AndrewT

[roobarb]

Hi xliddy

I had diagnosis of SLE 6 or 7years ago, & also have the overlapping BOGOF illnesses of raynauds, sjogrens & APS. More recently I was diagnosed with vasculitis from lesions on my fingers, toes & legs. But, like you, I don't know what type it is yet.

In reality the lesions have been coming & going for as long as I'd had SLE symptoms, which is 15 years now. But they were never there for the rheumy to see.

I hope to find out more from my rheumy next week, but as AndrewT says the treatments are basiclly the same, & these illnesses often go hand in hand. So I get the impression that its a case of one size fits all.

Others on here will know more, but I understand it is the ANCA test that is important with vasculitis. As opposed to ANS in lupus.

Very best wishes. X

[Sarahjh2004]

Hi xliddy...I hope you have received some answers since your post. I just wanted to highlight that not all treatments are similar. Richard and i have both for Huvs (similar markers and same antibodies as Sle) which is very rare even for vasculitis but our treatments, medication and management are very different. Saying that our presentations are also differ. I have stay in hospital treatment over a 6 day period every 10 weeks where as Richard is managed at home. .

Good luck x