Heart & breathing problems

[Derek]

Hi everyone. I have limited WG, diagnosed in 1989,. I have always had ANCA & PR3 showing in blood tests but most of the time not very high, but always present. ESR up and down but never reaching a normal (whatever that is) level. The latest blood results show for the first time Anca and EST below the normal range. Which is odd as in 2008 I had chest pains and had a stent fitted to one of the heart arteries, in 2009 I had another stent fitted due to heart dieases. IN march this year I was getting bad chest pain and was breathless even when walking. I had another angiogram which did not find anything. My WG doc is now concerned that my heart might be effected by the wg and put me on 40mg pred to see if it made any difference. It did I was a lot better and did not have to use the angina spray. It also improved the blockage in my nose and ear. Sorry if I have rambled but I was wondering if anyone else had
1. Heart problems
2. Active WG will the ANCA/PR3 & ESR levels were ok.

Thanks

Derek

[chrisTIn@]

Hi Derek. I like the humour of your 'Things to do today'...
I have 'Limited WG' too, and sometimes I am so tired that the time between getting up and going back to bed is short.

My ANCA is still elevated, allthough my Wegsdoc said I'm in remission.
(Apparently remission doesn't automatically mean 'symptomfree'.)

Good to hear that the Pred makes you feel better.
Hope you can find the answers to your questions here...

[Jack]

I have not got anything very constructive to add other than the fact that Wegener's can affect the heart, but in most people this damage does not produce symptoms. Also, ANCA is not a reliable indicator and can only be used together with other indications to aid diagnosis and monitoring.

I must say that I am very much against the use of the terms "Limited Wegener's" and "in Remission" because they are so open to interpretation that they have little meaning. For example, you can have Limited Wegener's one day and a short time later it can become serious enough to be life threatening. I consider myself to be in Remission, but I take a huge number of drugs and can't walk so does it mean anything useful at all?

[Sangye]

Derek, I don't have heart involvement, but I'm wondering why your doc didn't do an an echo of your heart. That's usually what they do to check for Wegs involvement. I don't know anything about stents, though-- maybe you can't have echos or maybe it isn't going to show what they'd be looking for.

I just wanted to say I've had very active disease with normal inflammatory markers. I also wanted to say I agree with everything Jack said. Technically I have Limited Wegs, but it tends to cause alveolar hemorrhage-- one of the most deadly and difficult to treat complications!