Seeking vasculitus consultant North Wales

[Maddy43]

I first noticed numerous red marks on my legs together with painful joints and generally not feeling well in December of last year.

I went to see my GP who thought it could be vasculitus and put me on prendisilone,and made an appointment for me to see a dermatologist. I had a skin biopsy in March and was

diagnosed with Leukocytoclastic Vasculitus. I continued to have breakouts of purpura weekly,and my GP kept upping the prendisilone to 40 mgs per day.

I was hospitalised on the 1st May suffering from extremely bad side effects of prendisilone,which caused very painful swollen ankles and legs and a weight gain of 3 stone of which majority was fluid collecting in my legs and ankles, my heart and even around my voice box,which affected the tone of my voice.The dermatology doctor came to see me and I was told to reduce the prendisilone slowly to zero which I achieved by 23rd May at the same time I was put on Dapsone with weekly blood tests.

I am still suffering extreme pain in my legs, which are swollen and red,pins and needles in my feet and legs, knee, ankle and hip joints very painful making it very difficult for me to walk. having been a very active person I feel I have no quality of life.I.am now on 100mgs and 50 mgs of Dapsone on alternate days and still no better,although Ihave had no further outbreaks of purpura.

I was wondering if anyone knows of a vasculitus specialist in or near my area of North Wales, or North West England as there are none at my local hospital Bangor.

Hope someone can help.

[quinnster]

contact dr janice harper royal liverpool 0151 706 3602

[Maddy43 in reply to quinnster]

thank you I will contact her on Monday

[PatriciaAnn]

Dr Harper opened the new Merseyside, Cheshire and N.Wales Vasculitis Support Group on Thursday. She explained to members how the vasculitis service works in Liverpool and, more important, her vision for the future. Dr Harper is passionate about patients being diagnosed and treated quickly and properly and by physicians who know something about vasculitis. I'm sure that in Dr Harper's hands you will get the treatment that you so badly need. Her vasculitis nurses also seemed really knowledgeable about the subject and were lovely ladies.

Try contacting her department on the number Quinnster gave. Don't forget to say that you are requesting a consultation as a result of what Dr Harper said at the vasculitis meeting on Thursday.

PatriciaAnn

[quinnster]

just to let you know also,liverpool has a specialist vasculitis nurse,there are only 2 in the country.

which is great as you have a phone number with a direct link if you have any problems,if you want to pm me i can ring you,and give you more help and details

[Maddy43]

Thank you both for your help. I will contact Dr. Harper on Monday with view to a consultation. I've got lots to questions I would like to ask but need a bit of time to prepare them all, if you don't mind I'll pm you quinnster when I've thought of them all.

Thanks again.

[mvennitti]

This is a a facebook sight for L.Vasculitis. You can post here for some answers. They are a great group. I hope they can them you Be well. laughingnana

facebook.com/groups/4162694...

[Maddy43]

Thank you all for letting me know about Dr. Harper. I have had a consultation with her, and am going into the Royal Liverpool hospital on 6th August for a few days for more tests and a kidney biopsy

[lucindaross]

i go to glan clwyd hospital in bodelwyddan. I went there with the same vasculitis and i find the staff there are great. I now live a practically normal life, and walk 4miles a day. x

[Maddy43 in reply to lucindaross]

Thanks for the info who is your consultant at Glan Clwyd and which department.

What medication are you on

[lucindaross]

im on prednisolone and mycofenolate. i see dr roychowdry there but i think theres another consultant called dr mclean who deals with it too. I now am able to deal with my own meds. eg if i feel tired or get sick i up them then and reduce them if i feel better.

the only problem with immunosuppressants is that they can make you depressed and also make you prone to catching bugs and infections. but compared to the pain i was in and how badly my life was being affected i am willing to roll with it