Me again😏

[mams57]

Sorry but I did have a positive ANCA P I think it was P and have had some wacky WBC counts thru the years, Along with night sweats, low grade fever almost constant and normal body temp is 97.6. During flare times my blood pressure would get very low.
please let me know if I sound familiar medically ( not mentally, I know 🙄&#128514 Thanks much

[Pete]

Yeah, those sound like wegs in a flare.

[annekat]

I think ANCA P can be MPA, a similar disease. But some with WG have it, too, though the usual one for us is ANCA C.
Either way the treatment would be about the same. I'm sure your rheumy can sort things out, if he or she has some experience and knowledge of these things. The sweats and fever are flare signs, for sure. My normal body temp is also around 97.6, not sure what that means, but when it gets up around 98.6 or so I consider it to be a low grade fever, though it's hard to convince a doc of that. I haven't really thought to check my blood pressure during flares. Mine seems to fluctuate a lot under normal circumstances.

[mams57]

Yes, I can't swear to the ANCA P or C but I know it's one of them. I never thought I would say that I'm happy to know that what I'm fighting is autoimmune based but I'm assuming since I'm responding to the Trexall that we've hit the nail on the head, or near enough.... �� Thanks for the welcome, I'm feeling less lonely about it all. I have a great husband, wonderful kids but it really is good to hear about others who can personally relate to all of this......

[annekat]

Yes, I can't swear to the ANCA P or C but I know it's one of them. I never thought I would say that I'm happy to know that what I'm fighting is autoimmune based but I'm assuming since I'm responding to the Trexall that we've hit the nail on the head, or near enough.... �� Thanks for the welcome, I'm feeling less lonely about it all. I have a great husband, wonderful kids but it really is good to hear about others who can personally relate to all of this......

It doesn't really matter which ANCA it is as long as things are progressing and you are responding well to treatment. That's the important part. And feeling less lonely, despite having loved ones nearby, is a definite plus to joining this forum, as we are the ones who understand what you are going through. Best to you, and keep us posted!

[mams57]

Thank you. Truly appreciate the encouraging words. I will definitely keep in touch on the forum.

[mishb]

Hi Mams and welcome.

I just wanted to say that I saw a rheumy a couple of months ago for my husband and I asked him if he had any WG patients.
He said "We don't call it Wegeners anymore" [image a toffee English accent, with a plum in his mouth]
I thought he was going to say that we now call it Granulomatosis with Polyangitis (GPA), but no, he said "We call it ANCA associated Vasculitis"

Well la de da

However, this works for your thread. It really doesn't matter if it was P Anca or C Anca that you had, what you have is Vasculitis........ANCA Associated Vasculitis.

Welcome to the club, but sorry you have reason to be here.

[annekat]

La de da is right, Michelle. Mams, a lot of us still call it Wegener's, especially on here, and you are perfectly OK with doing so. I like it best because it is easier to remember, says exactly what kind of vasculitis we are talking about, and makes an impression. There will always be the complaints that Dr. Wegener had some connection with the Nazis, but as far as I know, the extent of that involvement has not been proven or documented. (I have also heard it called Klinger's disease, because one of his students named Klinger supposedly discovered it.)

[Pete]

No matter what you call it, it's nasty...

[MaxD]

La de da is right, Michelle. Mams, a lot of us still call it Wegener's, especially on here, and you are perfectly OK with doing so. I like it best because it is easier to remember, says exactly what kind of vasculitis we are talking about, and makes an impression. There will always be the complaints that Dr. Wegener had some connection with the Nazis, but as far as I know, the extent of that involvement has not been proven or documented. (I have also heard it called Klinger's disease, because one of his students named Klinger supposedly discovered it.)

Anne, you might find these interesting:
http://www.nytimes.com/2008/01/22/health/22dise.html and
https://en.wikipedia.org/wiki/List_o...i_associations
http://rheumatology.oxfordjournals.o...5/10/1303.full

I personally find the medical community's decision to rename the decision wise. And, as one article notes, both GPA and ANCA assoicated granulomatous vasulitis are used nowadays.

Why would we (i.e. this community) want to stick with Wegeners? Because it's easier to pronounce? Because it's what we're used to? Because that's what older docs learnt it in medical school and keep using? Because we just don't care? Because we're lazy?

I can't think of any other excuses.