Limited Wegeners

[Kuntzy]

Hi!

First of all, thank you so much for this website. It is an awesome tool for information about WG!

My daughter, at age 22, was diagnosed with Limited WG in Jan 2010 after about 4 months of sinus problems and inability to breathe because of swelling in the trachea area. She is currently being treated by Dr. Urich Specks at the Mayo Clinic in MN. I'm curious to know what classifies a "Limited" diagnosis other than that it is limited to her sinus area. Are there other reasons that it would be classified as limited? Does this mean that her chances of getting it in other areas are less or chances of relapse are less? I cannot find any info out there about why it is called limited. Thank you!

Nancy

[NicShaf]

Limited Wegener's describes cases that don't have kidney involvement. I have Limited Wegs and I've had sinus and lung involvement. Unfortunately, it doesn't mean it is any less likely to flare later.

How is your daughter doing?

[drz]

Hi!

First of all, thank you so much for this website. It is an awesome tool for information about WG!

My daughter, at age 22, was diagnosed with Limited WG in Jan 2010 after about 4 months of sinus problems and inability to breathe because of swelling in the trachea area. She is currently being treated by Dr. Urich Specks at the Mayo Clinic in MN. I'm curious to know what classifies a "Limited" diagnosis other than that it is limited to her sinus area. Are there other reasons that it would be classified as limited? Does this mean that her chances of getting it in other areas are less or chances of relapse are less? I cannot find any info out there about why it is called limited. Thank you!

Nancy

from Medicne net:

Wegener's granulomatosis is a uncommon type of inflammation of small arteries and veins (vasculitis). It classically involves inflammation of the arteries that supply blood to the tissues of the lungs, the nasal passages (sinuses), and the kidneys. "Incomplete" forms exist that only involve one of these areas. When both lungs and kidneys are affected, the condition is sometimes referred to as generalized Wegener's granulomatosis. When only the lungs are involved, the condition is sometimes referred to as limited Wegener's granulomatosis.
Wegener's granulomatosis usually affects young or middle-aged adults. Although it is uncommon in children, it can affect people at any age. The cause of Wegener's granulomatosis is not known.

Under good treatment which you will get from Dr. Specks the chances of damage to her major organs are probably very low.

Sorry about your daughter but glad you found this resource so early on. Welcome to the forum.

[Sangye]

Hi Nancy, welcome to the group. Limited means a lack of kidney involvement. You can have lung involvement--even severe and life-threatening-- and it's still called "limited." What is important to know is that it's the same disease. There is nothing specifically limiting it to the upper respiratory and/or lower respiratory systems. I'm glad your daughter is being treated by Dr Specks. She'll have the best care possible.

[Jack]

You will find that a lot of people on the forum do not like the term "Limited" since it is misleading in its implications and it is not unknown for limited to later become unlimited! It is not as if it is a different disease and the other variations in symptoms are so wide that it is odd for this one to be singled out with a name.

[Kuntzy]

My daughter is doing very well. I am just so thankful that we pressed on, initially, to find out what was wrong as she was treated with antibotics for an infection, zantac for acid reflux and so on. I finally requested a referral from the ENT to Mayo Clinic to find out for sure what was wrong. She is currently on methotrexate and has had no relapse since she started taking it over a year ago. We are hoping that she will start getting weaned off of it in the next few months. After reading some of the stories on this site I realize how lucky she is and how diligent she must stay in being aware of the different symptoms. Thank you so much for your concern! I hope that you are doing well and wish you the best!

[Palmyra]

Kuntzy,

You are very lucky for her to be controlled with methotrexate alone. That is fabulous news, as few that I have come across have been able to control the disease with that mild of a medication. My daughter is also treated by Dr Specks (wonderful human being, no?!) and I applaud the Mayo Clinic at every opportunity. I am so glad you found good care early, and I wish her continued remission. Dr Specks and that entire facility will give you wonderful guidance on how to try to avert bigger problems, and if other symptoms do present, they can address them earlier rather than late.

[JanW]

Kuntzy, your daughter sounds similar to me -- I am also on mtx alone and presented with sinus issues, saddle nose and subglottic and tracheal stenosis (mine mostly limited to subglottic). I too am reducing meds with the hope of a med free remission. I was diagnosed in January 2010. Good luck to your daughter!