Vasculitis UK

Could my newly diagnosed enlarged heart really be Vasculitus, as I have been left untreated for 3 years by my GP and local Hospital,

I have been left untreated for 3 years with Systemic Vasculitus, I cant take inflammitorys as it makes me bleed, I cant go on steroids my doctor and Rhumatoligist tells me as I am overweight, and Friday I got called to the Doctors only to be told I have Heart Disease and my heart is enlarged and my lungs show congestion (just got over Pneumonia Nov, taken weeks to get rid of it). After two days the shock finally hit me, now I am beginning to wonder if this could be my Vasculitus, I have been feeling ill with it for ages, the sheer lack of energy tirdness, headache and occasional flu like feeling, am wondering if this could be a possibility, my GP doesnt always get it right, can anyone tell me a little about Pulminary Vasculitus, can you live with the damage it does and for how long? does it mimic Heart disease at all? I am just trying to digest all this, its bad enough having Vasculitus, dont need anything else on top of it, I realise I need a specialist but just wondered if anyone has or has had it and can tell me a bit, many thanks!!

2 Replies

Hi Ezrela

There are a number of the vasculitides which can affect the heart. Maybe you don't have a second disease but the one disease which is manifesting itself in different ways.

Have they actually given your vasculitis a name other than systemic vasculitis?

Maybe it is time that you were seen by a doctor specialising in vasculitis and getting a second opinion. Why should you not have steroids because you are overweight? Is there some other problem? I know a number of overweight vasculitis patients - and they were overweight before they started on the steroids.

If you would like to have details of where you could be seen by vasculitis "experts" let us know where you live. The best place is Addenbrooke's in Cambridge. Birmingham is also very good, and there are some others up and down the country. Sometimes you don't have to travel so far to see a good doctor. Have a look at "Hospitals" in the top green band and see if anyone has mentioned a hospital in your area.



Hi Patricia, yes thank you for your reassuring advice, Im rather hoping it might be my Vasculitus as opposed to what my Doctor said Heart Disease, I looked up a few places which only said the words Pulminary Vasculitus then thought, if I have this disease, it could be likley, lets hope it isnt as bad as it seems, I am at presant going off to Guys Hospital on 14th February a week on Wednesday, a long way to go for me, but my daughter insisted I went there as her friends mother has Lupus and got treated and is now on Rixitub the new drug used, my daughter says it is expensive she works for NHS, I would like to be transferred to Addenbrooks once they have sorted me out as its nearer I am in Bedfordshire, I havent been told what kind of Vasculitus I have, they havent really done a thing for me here at Bedford Hospital its disgusting, its been 3 years now I beginning to wonder what damage is done, at least I will get treated anyway. Once again, I am thankful for your advice, when Ive done two or three visits to London I will ask for a transfer, I am just relieved that you are thinking also it may be Vasculitus connected, that at least is treatable unlike Heart disease which cant be, Thanks Patricia, Best Wishes Roberta


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