Just have to laugh!

[BookNut]

As I posted earlier, my Xolair shots have imrpoved my breathing immensely. Today was the first time I had seen the doctor since I started the shots. She was VERY pleased. My pulmonary function test was much improved, my energy level is back up, and best of all...no prednisone for 27 days and no shortness of breath. Yay!

Then she listened to my lungs. Still the rhonchorous wheezing that started almost 4 years ago. She laughed and said...."If this was the first time I was seeing you, I'd be horrified at how your lungs sound...but I've seen you so much worse that I can recognize the great improvement."

So....feeling "normal" can definitely be a relative thing! I am quite happy now that I can do everyday things without shortness of breath!

[renidrag]

So glad things are working out for you!

[annekat]

Sorry she can still hear the wheezing, but glad that it all seems so upbeat aside from that!

[BookNut]

Thanks renidrag and Anne! The wheezing is constant...but i am not aware of it at all unless I do the kind of breathing that doctors require when checking the lungs. So...as long as it stays stable, it is quite easy to ignore!

[mishb]

I love you bringing us such awesome news

[kaysee]

Glad to hear the shots are working. May you continue to improve and eventually get rid of the wheezing.

[Velma]

Is this for stenosis or asthma or just WG in general?
NO predi!!!! I might need to look into this for myself.

Happy for you and doing my homework now for me! Thanks for the update!

[BookNut]

Velma....I am a rare bird here on the forum. I do NOT have Wegs. I got onto the forum when I was misdiagnosed and fell in love with everyone...so I stayed. I have a rather mysterious case of what my allergist refers to as my "asthma-like illness". I have a 24/7/365 wheeze. NO medicines so far have EVER touched the wheeze. I also have persistent sinusitis and bouts of bronchitis, along with mild bronchiectasis. I had NONE of this till just about 4 years ago. Hence the mystery. I got much worse a year into all this. The constant post-nasal drip would solidify in my chest annd make me so short of breath I couldn't do the slightest activity without huffing and puffing. I was put on pred tapers, which gradually became so frequent that I was on them 13 times in the past 15 months.

Anyway...Xolair is intended for respiratory problems that go along with elevated IgE levels. So, since wegs is associated with underactive immune systems...maybe it would not appropriate. I have some low IG levels and some high. Xolair targets IgE specifically, and is doing a great job for me. i still wheeze 24/7/365....but the wheeze is only when I do the kind of deep breathing required when a doctor wants to listen to my lungs. I can live with the nose blowing and coughing, as long as I am not short of breath.

I posted to let folks know the good news for me and also so people could ask their doctors if it might be worth a try for those wegs who have wheezing and shortness of breath. It might be worth asking. The manufacturer itself will only approve it if your IgE levels are elevated. There might be other criteria as well. It is interesting. The doctors' offices get it directly from an authorized pharmacy. That pharmacy contacts me every month to get my permission for them to ship it to the doctor's office. You would think they were moving gold bars from Fort Knox. It IS expensive. The list price is somewhere around $1200-1500 for a monthly shot. Medicare covers 80% and the company has a good financial help program, so I only have a co-pay of $15.

Probably way too much info for you. But who knows? Maybe it is something that might help.