Wolff Parkinson White syndrome

[BronteM]

Does anyone else have this alongside their vasculitis? I was diagnosed last week and spent 24 hours on a heart monitor. Told not to fuss by the cardiologist, though she is referring me for more tests. She also felt that it was unlikely for there to be a link with vasculitis, but I hope she is checking this through with some other specialists.

[John_Mills Volunteer]

It does not sound as if WPWS is anything to do with the Vasculitis... thats if it is WPWS..have they given you a definite diagnosis?

It seems it is an inherited (congenital) condition that usuall does not show until later on in life. It is something we have not come across before and would be interested to know more.

It is very easy to assume that every illness is connected with Vasculitis but people with Vasculitis can suffer from all of the "normal" "same" "other" illnesses "normal" people have. . but on the other hand if a doctor/consultant says "something" is nothing to do with the Vasculitis then they must do appropriate tests etc to say what is wrong so that the Vasculitis can be ruled out... Vasculitis can cause so much damage if left unchecked...especially to the kidneys...also the doctors/consultants should always take into consideration all side effects of treatment/medication...as you have said the patient with Vasculitis has to be assertive because I think that unless you live with Vasculitis on a day to day basis or live with someone who has Vasculitis it is very difficult for anyone else to understand, even the consultants, doctors and nurses.... a good Vasculitis Consultant.doctor/nurse will always listen to the patient with Vasculitis to see how they are .....

just take care and I hope you have some answers soon

Susan

[BronteM in reply to John_Mills]

After talking to the cardiologist, I read the leaflet on patient.co.uk and now have a clearer idea of what is going on. I've had a fast pulse a couple of times before (once ten years ago when I had a difficult time with a hysterectomy) so it has probably been waiting in the wings! This time it may have been a reaction to dropping a couple of doses of MTX as the side effects were getting too much. Addenbrookes have put me back on to the MTX, but at a lower dose, and is going to talk me through alternatives next time I see them. As you say, it is easy to connect everything in to the vasculitis while forgetting that one is at an age when all sorts of other things can happen. Though up until now no one had noticed the WPWS on an ECG.

Will keep you updated if I am told anything that could be relevant to other vasculitis patients.