New from Utah

[Thakator]

Hi Stephanie,
Another welcome for you - - welcome and may your path down this weggie road be filled more with the good than with the bad. That's one of the positive things about having WG, there can be protracted periods of good. And, I would also add to those above who have commented on the cancer vs WG situation that it does indeed depend upon the type of cancer. In your case, as in mine, the suspicion was lung cancer after a CT scan reveled multiple nodules including one that was the size of a golf ball. My rheumotoligist ordered the scan after my first ANCA test was positive. She told me at that point she suspected WG but wanted the scan for further evaluation because the ANCA test is not sufficient in and of itself to nail down the dx. Lung nodules are a classic WG symptom and thus her suspicion was reinforced. However, before starting treatment she conferred with a pulmonoligist and a cardio-thoracic surgeon who both said that the large nodule looked too big for WG and that lung cancer was likely. They all agreed that an open lung biospy was needed before proceeding further.
The open lung proceedure is a rough one, but a needed one if you're going to be removing golf balls. For me, the pain was worth it - - because the pathology report ruled out the cancer. Good news for sure; the five year survival rate for one type of lung cancer is 14%, for the other type it is 5% .The bad news was that the report confirmed the existernce of WG. So, with the proof of positive ANCA and biopsy in hand, I am now on the path that so many of us on this site are tredding. But this path has a five year survival rate of 87%. A path I'd just as soon not be on, but a path much better than some. Yes, some cancers would be considerably easier to deal with and the dealing would be of a much shorter duration than that of WG, but lung cancer isn't one of them. So please take heart in that at the least.
The best to you, Ron

[marta]

Wow Stephanie,

I am reading your story and it's exactly a copy of my story. I just read it to my mom and her mouth is hanging agape at the similarities. We travelled the same journey this last spring, and it wasn't a pretty one. I just had a flare this last month that I'm trying to get a handle on and I'm so glad to hear that you're doing so well. I was about to switch to Meth just before the flare hit me, but alas. I had a flu shot in October (in which they stuck the H1N1 vaccine, and I'm 98% certain that's what threw me into a flare and in fact that it was the H1N1 shot that got me sick in the first place as I got my first symptoms 2 months after getting that initial shot - I just spoke to another WG patient in Sweden who also got it last year and started her WG symptoms two months after getting the shot).

This is a wonderful forum full of intelligent, supportiveand compassionate people. It has been a life saver for me and has tought me a ton. I have been my own best advocate in the last few months and it has paid off in heaps. I had to demand to be put on cytox a week and a day ago and I feel better today than I've felt in over a couple of months. I have gotten the confidence to stand up for myself with the medical system through reading a lot about this goofy disease, and the support from the people on this forum and their collective experience and willingness to share their horror stories.

Despite the crazy ride we're on, this has been an experience of growth (physically - thanks pred - and emotionally). It has also given me great ideas and projects that help keep my brain cells moving when I can't sleep at night.

Welcome and I hope you get as much out of here as I have.

[vdub]

The U of U Vasculitis Center opened up in 2007 I believe, so is relatively new. My PCP is getting me a referral to it now.

[renidrag]

Welcome Stephanie, I too, when reading your post, was in awe at the similarities to my own journey with WG. I was diagnosed in August of 2009 and went through the same meds as you are on. I remember the first day after my first doses I had enough energy to wash and wax my truck without a lot of pain. I though this would be a piece of cake. Boy was I wrong. I did, however, get through to remission and am presently drug free. Each day is still an adventure, but at least I know my new normal.
Dale

[goose1970]

Thanks everyone for all of your thoughts. I'm really happy to be here. I'm excited to know that I'm not alone in this. This disease is really a strange one and everyday is a new adventure. I have my good days and my bad days. I was wondering though if anybody else has had to deal with shortness of breath. I walk up a flight of stairs and feel like I've run a marathon. Also we have a lot of smog here in the winter and this really seems to effect me too.

[Sangye]

You can walk up a flight of stairs???!!! LOL I still can't do that-- 4.5 yrs after being diagnosed. I don't have the same level of shortness of breath I've had when my lungs are hemorrhaging, though. (Or when they were full of clots) I was on oxygen for 19 months.

Your breathing should improve with treatment. I've noticed that when I get to very low (below 5mg) doses of pred my lungs are more irritated by pollutants and are a bit wheezy. Dr Seo said that often happens with those who've been on pred. The lungs become more sensitive. It can be permanent, as he inferred in my case.

[JanW]

What I will mention as well with shortness of breath is possible subglottic stenosis, that is scarring and narrowing of the windpipe. If you happen to have endoscopy as part of your routine ENT workup, your doc would already no about this, but, if not, it can easily be misdiagnosed as asthma in the non-weggie and as another symptom even in the wegener's patient, because it's not common. Worth checking out, though. I had mine surgically fixed.

[ScreaminMeanie]

You can walk up a flight of stairs???!!! LOL I still can't do that-- 4.5 yrs after being diagnosed. I don't have the same level of shortness of breath I've had when my lungs are hemorrhaging, though. (Or when they were full of clots) I was on oxygen for 19 months.

Your breathing should improve with treatment. I've noticed that when I get to very low (below 5mg) doses of pred my lungs are more irritated by pollutants and are a bit wheezy. Dr Seo said that often happens with those who've been on pred. The lungs become more sensitive. It can be permanent, as he inferred in my case.

I've been experiencing this same thing. Good to know it may just be coming off pred (I'm currently at 5mg).

[Sangye]

It helps to run a HEPA air purifier in your home. This summer we had several days of smog alerts and I had difficulty breathing until I got home.