do i have wg

[carole1960]

was told i had wg 2 years ago no treatment was given since then i have constant headach neck pain and weeks when im really tierd im con fused as to weather i actuly have this was coughing up blood had some yhing anc p3 can anyone clarifie if i have it please

[Ayla Volunteer]

Carole, in my opinion you need to see a specialist urgently. If you have had a diagnosis of WG then you should be having treatment. Which hospital do you go to? Are you happy with what they are offering you? It amazes me that you have been left without treatment for so long. John and Susan Mills will give lots of help and advice if you get in touch with them. Don't wait!

[John_Mills Volunteer]

If you email John [e-mail] and explain everything to him, where you live, what hospital you are under, medication etc Also your age. John has Wegeners Granulomatosis and is chair man of Vasculitis-uk. You can also phone John 01629650549 anytime and he will advise and help. Take care Susan

[carole1960]

was in hospital for a week had lung biopsey and a scan in a big machine iv had two outpatiants appointments for lung function i was then discharged i was told i dont need any treatment cant say iv been ill since just tierd

i have limited wg

[John_Mills Volunteer in reply to carole1960]

If you have been coughing up blood then you do not have limited WG. Even if you have limited WG you do need medication and monitoring and seeing a doctor on a farly regular basis.

Limited WG - means localised/early systemic disease without threatened organ involvement. (The Vasculitis has not affected the lungs, kidneys, heart or skin) Treatment may include Methotrexate and steroids. Even so, some patients with limited WG are treated with Cyclophosphamide.

If it is not treated properly the Vasculitis can and does progress to the major organs. I have put our email address above and phone number you can contact us any time.

[carole1960]

thankyou very much for replys .i havent had any coughing up blood for 18mounths was given tranexamic acid which stoped the bleeding .i was told to contact the chest dept if i had problems with my breathing i do have some wierd things going on like a feeling of hot water being pourd beetween my big toe my foot really hurts some times when im sitting and sharp pains in my knee all on left side of my body apart from that i am well . i hope it stays that way .im 51 yrs old very active even when im worn out i just ignore how i feel and get on with it i waqs treated at the princes alexadra hospital harlow . carole