What types of doctors best diagnose vasculitis & any underlying causes?

[Ajanowiak]

A biopsy recently revealed that the issues I've been having for the past few years are linked to leukocytoclastic vasculitis. I am seeking out a rheumatologist for a second opinion before starting steroid/immunosuppressant therapies. What other types of doctors should I seek to find out the cause of my vasculitis? Any and all information shared about leukocytoclastic vasculitis would also be much appreciated. (Also, I'm based in the US, but haven't come across an online support forum here yet.) Thank you!!!

[Ayla Volunteer]

Welcome to our website! I believe leukocyctoclastic vasculitis is also known as hypersensitivity vasculitis and there is information about this on the Vasculitis UK website, within our Route Map information publication. Here is the link:

vasculitis.org.uk/content/d...

As for specialists - I think your rheumatologist is the best qualified to help you but maybe others on this forum can advise further. Good luck!

Ayla

[Ajanowiak]

Thank you, Ayla!

[Winter64]

Hi, I have positive biopsy for leukocytoclastic vasculitis, mine is linked to urticarial vasculitis as I have other urticarias and angioedema. I see Rhuematology, Immunology, gastroenterology and chest clinic consultants for my various symptoms, but I am in the UK.

There is a facebook site for leukocytoclastic vasculitis, if you cant find it let me know and I will send you link. There is also vasculitis UK site on facebook. Both give lots of help and support with the random symptoms and conditions that come along with vasculitis along with this healthunlocked site.

If it helps I dont currently take any steroids or immunosuppressants, I take Dapsone 100mg, Doxepin, Ad-Cal and tranexamic acid and at times add in other meds depending on flares, I wanted to start with the least strong meds and work my way up, which I have been doing sice 2007 but it will depend on the type of condition, what damage is or is being done to your organs if any etc for you and your docs to decide best meds. Also look to get your Vitamin B12, D and calcium levels checked as they are often low with autoimmune conditions and these can cause problems all on their own.

Best of luck Karen x

[Ajanowiak in reply to Winter64]

Thank you, Karen!

[RichardE Volunteer]

Strictly speaking I don't think Leuocytoclatic Vasculitis (LcV) is actually a specific type of Vascultis. It's more a general term for small vessel Vasculitis, particularly where the skin is affected. When there's systemic involvement, as the others have pointed out, it is usually possible to define it as a specific type like HSV, Urticarial Vasculitis or HSP etc.

But anyway, to answer your question, it will depend on what other organs (if any) have been affected. If you have kidney problems then you may need to be under the care of a Nephrologist. Otherwise you would tend to be seen primarily by a Rheumatologist. But as Karen says, some people also see immunologists and even other specialists for stomach problems, lung problems or ENT problems. It all depends on what's been affected.

As the others have said we have the Vasculitis UK website and also a Facebook group that you would be most welcome to join too :

vasculitis.org.uk/

facebook.com/groups/1635100...

But there is also the Vasculitis Foundation in America if you also want to have a look for more local support :

vasculitisfoundation.org/

facebook.com/groups/vasculi...

Jim Bornac (based in the US) also runs a great group with lots of links to medical articles :

facebook.com/#!/groups/3325...

All the best,

Richard.

[Ajanowiak]

Thank you, Richard!