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 🙄😂) 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 :mellow:

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. :rolleyes1: 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. :rolleyes1: 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_of_medical_eponyms_with_Nazi_associations
http://rheumatology.oxfordjournals.org/content/45/10/1303.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.

[renidrag]

If they had stuck with Klinger's Disease, we could be Klngons.
Dale

[annekat]

Max, I will look at those links when I have time. You don't need to direct them at me specifically, because many on here, including newcomers and their doctors, still call it Wegeners. Maybe it IS because we are lazy. I will freely admit to being lazy. Mainly, I think anyone such as an acquaintance who has never heard of it will remember a name better than a set of blah-sounding letters or long, cumbersome words. I don't mind calling it GPA, and have done so, though I don't find it commonly used in the medical community. If I reply to a post where someone calls it GPA, I call it that out of courtesy to that person. As for "Anca Associated Vasculitis" (AAV?) , that can describe more than one disease, and fails to say which one. Maybe we no longer care about distinguishing between GPA and MPA. I have no problem with people calling it GPA and if that becomes more commonplace, I will call it that more often if not exclusively. It will take time. Let's remember that this is someone's introductory thread, so let's not hijack it, and if you are so concerned about what we call it and why, maybe it should be addressed again, with the links you provided, on a new thread or an old one where this has already been discussed at length.

[annekat]

If they had stuck with Klinger's Disease, we could be Klingons.
Dale The like button has not appeared yet. I would have no problem with Klinger's disease. But we should thoroughly investigate the political background of Mr. Klinger and anyone else we dare to name a disease after! I even heard there was someone before that, I think a Scot, who has been said to have discovered it first. Maybe he would be a safer bet.

[Pete]

The like button has not appeared yet. I would have no problem with Klinger's disease. But we should thoroughly investigate the political background of Mr. Klinger and anyone else we dare to name a disease after! I even heard there was someone before that, I think a Scot, who has been said to have discovered it first. Maybe he would be a safer bet.

Perhaps you remember Corporal Maxwell Q. Klinger of M*A*S*H 4077?? :-0

[annekat]

Perhaps you remember Corporal Maxwell Q. Klinger of M*A*S*H 4077?? :-0 Yes, I remember him very well. I'd only remembered his last name. Now I'm getting confused. Was there a German officer of that last name on Hogan's Heroes? He's who I was thinking of. I think he had a monocle. But I do remember the MASH character...... and just remembered, it was Col. Klink on Hogan's Heroes. We can stop the hijacking now! Sorry, Mams!

[MikeG-2012]

Yes, I remember him very well. I'd only remembered his last name. Now I'm getting confused. Was there a German officer of that last name on Hogan's Heroes? He's who I was thinking of. I think he had a monocle. But I do remember the MASH character...... and just remembered, it was Col. Klink on Hogan's Heroes. We can stop the hijacking now! Sorry, Mams!

Sgt. James Kinchloe a/k/a "Kinch" was the radio man on Hogan's Heros. I watch it almost every night on MeTV (http://www.metv.com/). "I know NOTHING!" (-8

[mams57]

Ba hahaha, Klingons...... Well Done!
Call it what you will, its first name must be Evil....because if left unchecked it thoroughly destroys a human being.....

I do believe I've found a great group. Thank you for the resounding welcomes! :thumbsup:

[annekat]

Ba hahaha, Klingons...... Well Done!
Call it what you will, its first name must be Evil....because if left unchecked it thoroughly destroys a human being.....

I do believe I've found a great group. Thank you for the resounding welcomes! :thumbsup: I think that's part of the reason a lot of us still don't mind calling it Wegener's.... if he was a Nazi, we are naming an evil disease after an evil man.

[annekat]

Sgt. James Kinchloe a/k/a "Kinch" was the radio man on Hogan's Heros. I watch it almost every night on MeTV (http://www.metv.com/). "I know NOTHING!" (-8 You must be right about the radio man but he was on the Allied side, no? I also remember the little French guy, LeBeau. But I was thinking of a guy on the German side, a bald guy with a monocle called Col. Klink, if I'm not mistaken. He was my dad's favorite on the show. And there was a big dopey German guy who called him "commandant" all the time. The Germans were made out to be a bunch of buffoons. You must know more than I since you watch it every night. I'll have to google, but not now, don't have time.

[annekat]

Yep, looked it up, the actor who played Col. Klink was Werner Klemperer. How's that for a German name? Sgt. Schultz was the big doofus who kowtowed to him all the time. You were right about the radio guy, Kinch, of course. I'll have to look it up on late night TV, not sure if I still get MeTV or not but there are other rerun channels.

[Alias]

I tend to call it GPA, which is easier and more current, but so many forum participants call it WG that I do it too when posting here. I think I will stick with GPA from now on.

[annekat]

I tend to call it GPA, which is easier and more current, but so many forum participants call it WG that I do it too when posting here. I think I will stick with GPA from now on. GPA is the best alternative of those mentioned. It does roll off the tongue, unlike Granulomatosis with Polyangiitis or ANCA Associated Vasculitis. I also just tell people I have vasculitis, or an autoimmune condition. But that can mean a lot of things or nothing. Then if the conversation continues, I may say Wegener's, also known as GPA. Adding on Granulomatosis to that may be too much for the average person who knows nothing. My concern is that we are trying to promote awareness for this disease and other vasculitis and AI diseases, and by changing the name that is commonly used, we will be taking a step backwards in promoting familiarity with it.

[vdub]

Since we are a little off track, the program you should watch is Colditz. Just search Colditz on youtube and you'll get a couple different movies and an entire series with 28, 1-hr episodes. Colditz was the real life Hogans Heros only not funny. It is a terrific series. Since its british, you need to watch the first 4 or 5 episodes before you are totally sucked into the program. Once you're hooked, you won't get any sleep until you've completed all the episodes. I had both my kids watch it since it is a real good study in leadership on both the German and Allied sides. The stories told in each episode were based on real events.

I guess we should go back to the original topic now, eh? :-)

[MikeG-2012]

I guess we should go back to the original topic now, eh? :-)

I agree, but for the record its Friday and, "I KNOW NOTHING! NOTHING!" (-8

[Middlesista]

I tend to use GPA but have found some folks in the medical community (have had a few ER visits) have no clue but if I say Wegners a flicker of recognition does cross a few faces.

[Dirty Don]

if I say Wegners a flicker of recognition does cross a few faces.

That's cuz they saw it on page 420 of one of their medical books! Honest, that's what the internist who originally examined me said afterwards: "I saw it on a page of my one of my medical studies". RU kidding me! You don't say that in front of a patient, especially one who's been told how close he came to death...duh, thanks! Just a lil rant! Oh, and the word was Wegener's in his book...along with GPA. Best to all!