name of consultant

[jackrussell]

I have urticarial vasculitis, I have had it for 20years without any real problems,I am taking anti histamines, however since october last year i have had 8 very bad flares and am having a flare now, i am seeing a Rhuematologist who has done all the relevant test, and has prescibed Prednisalone 30mg but has anyone found a treatment that seems to work in stopping it in the first place , as i dont feel the Prednisalone is having any real effect ,other than to give me some confidence that something is being done, and i do feel that i need to move on from just having a stab at it with the Prednisalone when i have a flare I have to say that like a number of other members , I find it very hard to get my head around this sudden change in my illness, i try very hard to stay posative,and dont like to give into it,but i don,t know where i go from here, because i do so feel ill when i have a flare, Also does anyone know of a consulant that deals with urticarial vasculitis and which hospital they are at, and would i be able to ask for an appointment, I am currently attending Northampton General Hospital.

[John_Mills Volunteer]

You could ask your GP for a referral to the Birmingham University Hospital or Addenbrooks in Cambridge. Both hospitals specialise in all types of Vasculitis. Perhaps you need something more than prednisolone but only a consultant with a special interest in Vasculitis would be able to advise you. If you have an understanding GP maybe make an appointment and talk over things with them.

[Sarahjh2004]

Hi,

I have Huvs, a form of urticarial vasculitis. i am under a brilliant consultant who has supported me and strived to improve my condition. Although Huvs is very rare he has treated before. If you have UV i would definitely recommend him. He is currently writing a third paper to got me treatment and whenever admfitted for my flares appears at my bedside. He is also in charge of all teaching at the hospital so has clout which means things get done quickly.

His name is Professor Davies and he is based at The Royal Sussex County Hospital though also works out of Guys (i think).

I don't think i would be here today for him.

Good Luck and if you want further information please let me know.

X

[Dbis22]

Maybe The Nuffield in Oxford. Send me a message and I'll let you have the name of my Consultant there. My understanding is that he is well equipped to handle all manifestations of Vasculitis. The Nuffield is very accessible and an easy drive from the Northampton area.

Let me know if I can help!

[jackrussell in reply to Dbis22]

thankyou for your reply, Is the Nuffield a private hospital? Oxford is an easy drive for us( i dont drive )so i would like to have the name of your consultant, i dont know how knowledgeable my consultant is on vasculitis, but so far i,ve only been given Prednisolone which really hasnt helped much, and certainly isnt calming the vasculitis down, i,ve had 1 flare a month since October last year.

[KathyW]

I am under the Rheumatology Department of Christchurch Hospital which is a bit far from you Jack. However my consultant did host a seminar with consultants from around UK and used me as an example of a complex diagnosis. I am sure the good consultants around the country do keep in touch with each other and share information in this way. Good luck

[Winter64]

Hi Jack, I have urticarial vasculitis and also chronic urticaria, dermographism, delayed pressure urticartia and angioedema. I see immunology, gastroenterology and rheumatology, as they all treat the different bits I have problems with!

Rheumatology and Immunology told me that unless there is organ involvment the treatment for both UV and urticaria are the same in people who dont respond to antihistamines like me. last resort are the immunosuppressants such as cyclosporin.

At the moment I take 360mg Telfast, 1000mg tranexamic acid, 100mg Dapsone, 4mg Periactin and Ad-Cal twice daily.

I have had this for 7 years so a way to go to catch you up yet I flare on and off quite regularly and even all these meds dont seem to stop the cycle of flares I have, but as long as my skin behaves itself, because I get the giant wheals all over my body rather than the smaller ones on my legs, no-one has tried to deal with my flares even though I feel absolutely rubbish, its as though its just an accepted part of having this condition. I still work but its bloomin hard, I start work at 7am because I get worse as the day goes on and finish at 3pm and Im often in bed by 6pm, so this is a late night for me at 7pm

I would recommend having your vitamin levels checked I found out that I am B12, Calcium and Vit D deficient and this is quite common with chronic urticarias and autoimmune stuff.

Other than that take John and Sue's advice and if you can travel to see David Jayne at Addenbrookes, then try to see him or his team. I have seen lots of people on here swear by him as the best. I cant travel very well so I stick to my local hospitals but I sure wish I could when Im being passed from pillar to post and not getting any proper answers!

What sort of symptoms are you getting with your flares if thats not too personal a question?

Karen.