So, as it turns out, I have this disease...

[DubahMamma]

Hi All.

I'm newly diagnosed and new brand new to this site/forum. My thread title has pretty much been the opening to my response to queries of our friends/family who have heard that I have been sick. LOL

I was initially thought to have pneumonia, and a 3 a.m. trip to the emergency department with trouble breathing and chest pain on March 28th started our family on this journey. I was in hospital for a week while they worked on figuring out what was wrong (a la Dr. House ) Lung biopsy/wedge resection and all the other fun confirmation tests later, here I am packing plenty of questions on a daily basis.

Just wanted to check in and say Hello.

[Sangye]

Nice to meet you. I'm sorry you're a member, but glad you're a member. You get what I mean.

It's amazing you got diagnosed so quickly. What drugs are you on? Any other involvement besides lungs?

And the most important : Does your doctor specialize in Wegs?

[DubahMamma]

Nice to meet you too!

I guess it is pretty amazing after seeing other people's story's about struggling for so long with unknown ailments. I was sick (like I said, my primary doc was treating me for pneumonia) After about three weeks of being treated and not getting better and feeling just horrible etc. We had the aforementioned early morning E.D.trip for the chest pain breathing issues)

Drugs I am on currently (and the list just seems to grow after each new test I have):

Cytoxan (150mg) daily
Prednisone (60mg) daily
Bactrim

There are a boat load of other "incidental" drug/ vitamins /supplements too, but they, I think, are moreso to counteract to the effects of the drugs treating the Wegs. Bone loss, stomach ailments.

As far as I know, none of my doctors speacialize in Weg's, But the two main docs treating me are a Rheumatologist and a Pulminologist. The pulmonary doc was the one who made his suspicions known that it was Wegener's from the start of my hospital stay. I don't believe that either of them specialize in Wegs, but they both currently treat other Wegs patients (I am the only "active" one right now). I also now have (on top of my primary doc) a fertility specialist, a thoracic (sp?) surgeon and more PA's etc. than I care to shake a stick at! I was also seen by a host of other specialists in trying to rule everything out. (Infectious docs etc).

[Sangye]

Sounds like you're on a typical regimen. Given that you weren't at death's door, I recommend you consult a Wegs specialist ASAP. You may not need to do cytoxan, but non-Wegs docs wouldn't know that. My Wegs rheumy says he would have treated me differently (ie, no cytoxan)--and I was at death's door!

Consulting a Wegs specialist is even more important since you have fertility concerns.

To put things in perspective, I was my local rheumy's 13th patient with Wegs. My current rheumy has 300 patients in one research study alone. The sooner you consult a specialist, the smoother things go. I say this from personal experience and from observing what others have gone through.

Also, why are you on anything for bone loss if you're just starting pred? (Assuming you had good bones prior) It isn't a given that you'll be on it long-term, or that you'll lose bone rapidly.

Where are you located?

[DubahMamma]

Hey Sangye,
I'm sorry I'm going to try and post in a new thread, either I am taking to long to write my post, or I'm in a weird Ground Hog Day computer glitch, as every time I have tried to answer, I get logged out, and lose my darn post!

[pberggren1]

try doing it in MS Word first and then copy and paste to the forum.

[Doug]

DubahMama- Welcome to our sometimes dysfunctional but always entertaining and informative family! We are all here to support you, and take on the chore with love and as much
information we can give! This is an excellent intro to your new BFF, especially since your case seems to be well in control before you suffered some of the awful things it can do.

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