Has anyone who has been diagnosed with Wegener's for more than five years, ever been diagnosed with a cardiovascular disease?

[PatriciaAnn]

I haven't Sylvia. Plenty of other things but not cardivascular disease. I've had several ECGs to make sure all is OK.

[PaulBingham]

Hi Sylvia,

I contracted WG in May 2006. During my cyclophosphomide treatment, I had a DVT,which went away with warferin and time.My consultant said that DVT's were very rare, which is not entirely true as one of the stated side effects of Cyclophosphomide is a DVT, particularly if you have spent about two months very inactive in a combination of hospital and home. I came off Warferin in June 2007

In April 2009, my WG relapsed and I was put on a course of cyclophosphomide pills. In August 2009,I then had two pulminary embolisms spendig a week in hospital to sort them out.

My conclusion is that chemo can result in heart and lung problems although.I suspect that the ratio of those having a problem is relatively small although I contend that it is sufficiently significant for consultants to be aware of it

. My advice would be that if someone has had a DVT, then they should be seriuosly considered for being prescribed Warferin for life and certainly if they have to undergo a second course of cyclophophomide.

I am now on Warferin for life.with regular blood checks.

All the best

Paul

[John_Mills Volunteer]

Hi Sylvia, I'm very glad you posed this question. I took cyclophos for 5 years from 2001. (In 2008 I was diagnosed with carcinoma of the bladder, which must have been due to the cyclo. Unfortunately it has now recurred) In 2007, I had a dvt in my leg. I still take warfarin.

The WG affected my lungs and I seemed to suffer increasing shortness of breath after the WG was apparently controlled. WG can cause localised thrombosis, mainly in small vessels, but potentially in any vessels. My consultant, a "chest man", suggested that I might be having "mini emboli" in the lungs due to bits of clot breaking off localised thromboses. It was only speculation, but after I had the dvt & started on warfarin, my breathlessness seemed to improve. So whether my dvt was due to WG or cyclophos, I have no idea.

[Hidden]

Thank you for your replies, it has been very informative. It seems I have a type of angina and a small hole in my heart (patent foramen ovale) which has probably been there since birth. My symptoms were not chest pain but a bit more breathless and tired than usual which I thought was due to WG. I just wondered if there was any connection between WG and heart problems over the longer term. I am seeing my GP tomorrow and hopefullly I will have more information to share. Sylvia