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....

[Linda Ikuta]

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....

I was injected, took oral, and IV prednisone. They were very high amounts. My glucose and B/P were wacked out big time! I was on Methotrexate for over 10 years. My skin is changing on nose and cheek. Methotrexate can cause that. I will be going back for another type of treatment soon.

[vdub]

My glucose and B/P were wacked out big time!
Pred will do that.... Its called steroid-induced hyperglycemia and is very much like diabetes 2. I'm on enough steroids to cause hyperglycemia. I suppose the amount varies from one person to another, but suspect many of us have steroid-induced hyperglycemia to one degree or another. I take MetForminER for the condition and it brings A1C's right down to normal.

[Alysia]

I think that it is possible that pred will not help with certain issues. For me pred was life saver to my lungs and reduces the agony in my joints, ears and colon. BUT it never helped my bloody nose. Never had any influence on it. So if your wg is in the nose, Linda, it is possible that pred didnt help. For me mtx didnt work. Only rtx stopped the bloody nose that I had for about 3.5 years, untill it also became saddle.
Welcome to the forum Linda. You can start a new thread at the new members introduction, if you feel like.

[deanna]

My doctor also said I have limited, no lung or kidney involvement. When I left the office I wondered if all of the virus' and illness' I had were real. For months I was sick, sick and sick. Yes, I am glad that no other involvement now but I am dealing with ear problems and no one is able to come to an agreement about how to manage it. I am on Imuran 75 up from 50, was on 100 but was decreased bc of elevated liver enzymes. I am having some hair loss on 75mg, getting labs soon so we will see how things are. Am a small person so may not be able to handle the 75. Some joint pain.
I am a big advocate for myself and keep on top of things, if I feel that this doctor is not going in the right direction I will seek a second opinion. I am at large teaching facility so I feel I have the best care but you never know. Best of luck to you. d

[little sister]

I was diagnosed May 2015. My rheum didn't use the term "limited GPA" but my involvement was confined to upper respiratory system. Prednisone made me feel better all over than I had in probably 30 years (I'm in my sixties). But that's not my point. Rheum at vasculitis center told me that she feels maintenance treatment is important for the upper respiratory form because it is a little more likely to relapse. I was treated with Rituxamab infusions in July and officially in remission in December. Began Methotrexate for maintenance and slowly weaned off Prednisone (if there weren't any side effects, I would be happy to be on Prednisone forever. All my minor arthritis and energy problems are back without it.) I get tested every 6 weeks and she definitely looks at the results (recently returned from trip where I thought that I might have picked up an UTI so got my labs early and she called me the next day! I did have an UTI.) I don't know if any of you have been told that so just FYI.