New here - Ankylosing Spondilitis sufferer (although controlled), + Vasculitis, Possible Polyarteritis Nodosa. On Pred, Sulfasal & Dapsone

[cclarke]

Just looking to share info/advice and experiences with anyone else out there with these sort of ailments

[Deedrah]

Are you taking any kind of chemo meds or just the current ones because you haven't been officially diagnosed with vasculitis!

[cclarke in reply to Deedrah]

That's what I'm on so far. +Ve Vasc diagnosis and suspected PAN

[Suzym2u Moderator Vasculitis UK]

Where are you seen?

[cclarke in reply to Suzym2u]

I'm in Dundee Scotland

[Hidden]

Hi,

I live North of the border as well. I am a little confused about your post, are you saying you have a diagnosis of Vasculitis and ? Polyarteritis Nodosa ( PAN ) given that PAN is a Vasculitis variant ( there are over 18 different types ).

[cclarke in reply to Hidden]

Consultant says definite Vasc, (not sure of the type) and possible PAN.

[Hidden in reply to cclarke]

Dapsone is usually only used to treat HSP or Behcets, not PAN. Sulfasalazine is not normally used to treat Vasculitis.

Sorry, I am still confused. The Consultant thinks you have Vasculitis and PAN or that the variant of Vasculitis you have is PAN?

[cclarke in reply to Hidden]

My Sulfa is used to treat sinovitis which is a symptom of my AS, I've been on this for 2 years approx. The diagnosis from the dermatologist (Apr this year) is Vasculitis Cutaneous (NOS) which he's treating with Pred and Dapsone. He suspects PAN but as of yet undiagnosed/not sure. Hopefully makes sense? Much of this is new to me so maybe I'm not explaining it very well! 😊

[Hidden in reply to cclarke]

PAN is one of the rarer Vasculitis variants. I would question whether a Dermatologist has the necessary knowledge and experience to diagnose it.

There is a Rheumatologist in Dundee who takes a special interest in Vasculitis plus a multi disciplinary Vasculitis clinic in Aberdeen. I think I would want more diagnostic certainty if possible to inform treatment.

[cclarke in reply to Hidden]

Thanks for your comments - my Rheumatologist is good, not sure if she's specializes in Vasc and its many forms, I'm due to see her in September though. From what I can see so far the Pred and Dapsone are working, I'm due to see the Derm in 4 weeks time, but will continue to research in the meantime

[cclarke in reply to Hidden]

Do you have a name for the Rheumatologist in DD with interest in Vasc at all? Thanks again

[Hidden in reply to cclarke]

Sorry, forgot to reply. The Rhuemy's name is Dr Vinod Kumar

[Hidden]

Hi,

The Rheumatologist in Dundee who has a special interest in Vasculitis is Dr Vinod Kumar.

[cclarke]

Thank you 😁