Vasculitis was Re: C-reactive protein

[Guest guest]

I am being told to take an aspirin a day, which I may begin soon,

although I have an ulcer and many esophageal erosions, so I'm a bit

afraid that will get worse. I definitely will go for the enteric

aspirin though. I'm also a bit afraid because I've had problems with

long clotting times, so going on aspirin even scares me a bit.

My MRA's have been normal, but have only had two (had many more

MRI's). But they still seem to think I could/do have cerebral

vasculitis.

I am on Vitamin K now (LEF kind, not prescription), and that is

supposed to " regulate " clotting - will help clot or reduce clotting

depending upon what the body needs. So I am still wondering about

adding the aspirin to the mix.

I'm assuming you guys have gone to a hematologist? I am thinking of

going to one myself.

Take care,

RH

> RH,

> My sons mito came first. No doubt about that and he does have a

definitive

> mito.

> His vasculitis came along when he was three. He does have a

confirmed

> Vasculitis by MRA. He is on coumadin and asparin due to clotting

disorders and

> cannot undergo angiogram. If he did he would either stroke off

the coumadin (as

> he has had multiple SLE's and 4 pulmonary embolisms) or bleed out

on

> coumadin and you cannot stop a brain bleed. either way the docs

said they would

> probally loose him on the table.

> He has had a MRA every year and his films show the occlsions

clearly and

> they have moved all about his brain every MRA as is typical with

vasculitis and

> the films have been read by neurologists, radiologists and sent to

other

> states to be read by neuroradiloggists and even pediatric neuro

radiologists.

> every one has said vasculitis so basically the angiogram would

only confirm

> what we already know and provide no further treatment options..

> Is your vasculitis CNS also? did you have a MRA?

> The docs all said the vasculitis is due to the mito as the

arteries are

> smooth muscle and therefore subject to mito. I read this also in

one of cohens

> articles, I believe it was Cohen.....

> I sure hope you are not severly affected by this vasculitis , it

can be

> nasty...are tehy giving you anything for it?

> My son is immunedeficient so htey dont feel comfortable with long

term

> prednisone only short courses with IVIG...

>

>

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