Limited GPA

[ohitsacrimebaby]

I have searched for this topic and came up empty, perhaps the wrong keywords?

My symptoms seem not to fit GPA, however coincide with something called "limited" GPA. My question is, what do you kind folks know about this seemingly mythical version of GPA?

[MikeG-2012]

From what I understand, the term limited hasn't been used in a while, because if someone has any of the symptoms, regardless of the severity or number of affected organs, etc., the disease is still the disease.

[ohitsacrimebaby]

That was my thought as well, however my rheumatologist has suggested it's "limited"...

[Alias]

Based on my reading and discussions with docs since diagnosis, "limited" or "non-severe" GPA refers to GPA that has not affected vital organs, such as kidneys, lungs, etc. and mostly affects upper airways and ears. I think both terms are a bit misleading since (while it's certainly better to not have vital organs involved) the symptoms certainly seemed severe to me when I was acutely ill! I have "limited" GPA and still deal with nasty effects of the disease and its treatment every day. If you have "limited" GPA, you still have an autoimmune disease that requires close monitoring and long term treatment.

[gilders]

Limited GPA is probably not a term used as often because you could present with just sinus issues, then later on you may have other organ involvement. Therefore using the term limited could give the impression that you have a form of GPA/Wegener's that will only ever effect the sinuses and that can't be guaranteed.

[NikkiNicole]

I am in the same camp as everyone else. I believe some doctors think it's limited when it's confined to the less life threatening areas. Unfortunately, that doesn't mean that it will stay there forever and ever and ever. I'd be afraid of the doctors getting complacent with someone described as 'limited' and not paying attention to worsening symptoms until it is all too late.
The only strange word my doctor has ever used (and I would be someone that falls into the limited category) is "smoldering". She feels that I never reached remission (until hopefully now) and have always been "smoldering" so she is doing what she can to put the embers out for the time being.

[Alysia]

It makes me angry when docs are using the "limited wg" title. No such thing as "limited wg". They use it when there is no involvement of the kidneys. But it can still cause severe damages. This stupid "limited" title caused my docs not to give me the right treatment about 3.5 years, meantime my nose became saddle and wg became more stubborn. wg can attack more organs in time. I started with lungs and nose. Then the colon. Later ears and joints. And this year also eyes and now checking heart involvement. I am still under the "limited" title...

As for smoldering : this title indicates wg activity which is less intense then flaring. But again the mistake of the docs is that it is not serious enough to treat seriously.
I think that my beautiful Phil was smoldering and this is what caused him holes in the lungs.

Weggies friends, dont ever let your doc dismiss you with "limited" or "smoldring". If he does, either teach him a lesson (like my dr. Learned) or find another dr.

[vdub]

I was initially labeled as limited, but then my 2nd-opinion doctor changed it. I have heard limited mentioned in a long time.

[Linda Ikuta]

Only my biopsy of nose has shown GPA but no one has ever said "limited." I have had GPA now for 15 years. Have been off and on methotrexate. Prednisone does nothing for me. My face is getting worse though.

[vdub]

Prednisone does nothing for me.

I have never heard of pred not doing anything -- very strange. What levels of pred were you on? How much mtx are you taking? When you say your face is getting worse, do you mean it is affecting more than just the sinuses? BTW, glad you joined our little group....