New to the group

[Vansyckle73]

Was diagnosed at the end of August with Wegener's affecting my eyes, nose, lungs, and skin. Was sick for nearly a year and unfortunately went through 3 surgeries and one hospital stay before being diagnosed.

Have learned a great deal so far through all the posts of my Weggie friends as well as exhausted the searches on the John Hopkins, Rush University, and Cleveland sites. I am far from an expert but I sure have built a foundation of knowledge.

Keep on fighting! We will find a cure. Hopefully we put this disease in its dormant place and we can get back to living healthy and active lives.




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[me2]

Welcome. What kind of treatment are you on now? Has it been helping you?

[Vansyckle73]

I am on cyclophosphamide and prednisone under the direction of my pulmonary doctor. Next week I am meeting with a rheumatologist to start that relationship.

I am considerably better but far from the end of this journey. I use SinuPulse machine to assist with my sinuses, looking into ear tubes to drain the fluid and ring my hearing back, and I am trying to figure out how to breathe better. I lose my breath very easily.

I have noticed bursts of energy more often. Unfortunately they don't last long and I tend to take it too far. I am still learning to manage this.


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[me2]

It sounds like you are on the right track. The rheumatologist is the one to properly manage your wg treatment. I've had my hearing plugged up before and gotten it all back. I hope the same for you. There is also a great chance your breathing will improve quite a bit.
Have you done an introduction in the 'introduction' section here? It would be great to learn more about you if you feel up to it.

[Vansyckle73]

Why is the rheumatologist the right one to manage it? Do they do something specifically different than a pulmonary doctor would? Just curious.



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[me2]

My primary doc of 40 years ago told me that rheumatologist's are the ones to treat wegener's pretty much by default. Whatever the reason, they are the ones that see the most wegener patients and are given charge of their care.
Typically the rheumatologist guides the overall care of wegener's and sends you to specialties as needed. Many people started the journey with an ENT (myself included) because of the high incidence of airway involvement- especially sinuses. Your pulmy sounds like a good one to get you on proper treatment right away and then have the rheumatologist to oversee things.

[Vansyckle73]

I will keep that in mind. My current doc is doing that and so far so good. Very pleased so far by the progress.


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[Titus3:2]

Hi Vansyckle73,I am very sorry that you have this disease, but this is a great place to be if you do.Clearwater,Fl is my old stomping ground. I spent a lot of time at Morton plant many years ago because of this disease.Finally, diagnosed in Gainesville. Pulmonary handled my GPA from my diagnosis in 1988,until it showed up in my cheek,and jaw in 2005.At that point Rheumatology took over the case,and they have been in charge ever since.If it was not for this disease I would still be living in Clearwater. Hope ,you get to feeling better,Keith.

[Vansyckle73]

It ended up in your cheek and jaw? What were those symptoms like?

I hope to remain in the area but I do need to get better. No plan to leave yet, but hopefully we can still make progress and fight this disease.


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[Titus3:2]

The cheek,and jaw involvement was more of a huge inconvenience,than anything else.A mass in my cheek was discovered,and a CT scan showed activity in my jaw.Three different biopsies were performed,before the diagnosis of GPA was made in that area.It can still be visualized on CT,but no real damage done.Everyone here will tell you it can be a very slow journey,but things will really improve.Your breathing will get better.It will surprise you how things will improve,and be almost normal again.I hated it when Rheumatology was added to the list of docs.Give it some time.If you do want someone else's opinion,the Mayo Clinic in Jacksonville is pretty good.It was hard for me to pull up stakes,and leave Clearwater many years ago.I am not suggesting you do that.Hang in there.Other members can give you some good advice.You can always vent your frustration here.Keith