New from Utah

[goose1970]

Hi my name is Stephanie and I'm 40 I was diagnosed with WG in May of this year. I was so happy to find this web site. My journey has been like many others that I have read about on here.

In March I thought I had an ear infection and went to the dr. was prescribed antibiotics after 10 days no improvement. Then I got strep throat another antibiotic which cleared up the strep but not the ear. I was referred to an ENT. I was feeling terrible. I was having night sweats, fevers, chills. He decided I had a sinus infection so another round of antibiotics and a steroid started to feel better for the week I was on the steroid. After I was off the steroid I started to feel terrible again. A month had pasted and 5 different antibiotics later no one could figure out what was wrong with me. In May I had a terrible cough and started coughing up blood went to t the Dr. again and they decided that I had pneumonia and did a chest x-ray. They then sent me for a cat scan and I had to go back to the Dr. to be told they thought I had lung cancer. I'm not a smoker so I couldn't believe that I had lung cancer. But they said it had mataisized (sp) from some where else. So I was scheduled with an pulmonologist for a brochoscopy I went for that and they couldn't get the tube down my nose because my sinuses were so swollen. I had a smart Dr. she ordered a anca test and then they decided I had WG. I started treatment on May 29. I was truly scared I thought I was going to die, but after 2 days on meds I was able to get out of bed and shower that was truly a miracle. I've been on cyctoxan, bactrim, priolsec, and preds. for about 6 months now. I am changing from cyctoxan to azathioprine. I'm really nervous because a new medicine always scares me.

I'm a mother of 4 beautiful daughters and I've been married for 20 years. My family is great. They have been very supportive. I'm still so glad to have found this group because as supportive as everyone is they have no idea how I feel. I'm happy to read your postings and see that I'm not alone in this. Since I don't look sick people think I'm fine now. Everyone was relieved it wasn't cancer, but this is not much better. So i hope to make some lasting friendships on my journey through this awful disease and look forward to having your support.

[Psyborg]

Welcome to the board, I also get the "you don't look very sick" thing a lot. Even when I was really not doing well, if they didn't know me from before they acted like I was making it up. You've found a great place for support and information, I've learned as much here as I have from my doctors to be honest.

[Jack]

Hi Stephanie and welcome to the forum.

It sounds like you managed to get diagnosed before too much permanent damage was caused and you have responded well to the ctx. Your other drugs all seem to make sense too so hopefully you are being treated by someone who knows what they are doing. This is not always the case.

The switch to Azathioprine is typical and if your Wegener's is under control it should not present any problems. You need to get off the ctx as soon as you can, but things need to be stable first. Hope you continue to make good progress and I look forward to seeing your posts on the site. We'll do our best to answer any question or just listen if you are having a bad day. Unfortunately Wegener's is quite good at throwing you the odd bad day. Or even more! But most of us come through it some how.

[Sangye]

Hi Stephanie, nice to meet you. I'm glad you got diagnosed before major damage was done and that you're responding well to treatment. Here's some info for you What the Newly-Diagnosed Need to Know .

I believe there is a Vasculitis center in Utah now. JanW has the info.

Boy, we all sure understand the "you don't look sick" thing. Very difficult part of this illness. Our society only thinks of cancer when it considers terrible diseases, but at least with many cancers there's a chance for a cure. Given that Weggies often spend years on harsh drugs and suffer damage from the disease, the drugs and other complications, I don't understand why people sometimes tell us "Well at least it's not cancer." You'll certainly learn to do a lot of explaining!

[pberggren1]

I'd trade this Wegs in any day for cancer.

[Jack]

Don't speak too loud, you can very easily get both you know.

Cancers come in all sorts of shapes and sizes. I would not wish some of the bad ones on anyone and certainly would not swap.

[Sangye]

I wouldn't swap, either. They both stink in different ways. I think the only thing people with cancer have that Weggies don't is the understanding of pretty much everyone--doctors, laypeople. Everyone knows what cancer and cancer treatment is about.

[elephant]

Welcome Goose, and we are here to support you and feel free to ask questions and vent out frustrations. Sounds like you have a nice family and good support!

[janNaz]

Hi Stephanie....welcome! Yes, you have found a forum filled with such invaluable information about WG from wonderful, caring individuals. I know that I would be lost without it. Reading your story brought back memories of my initial symptoms, which started last Christmas...almost a year now. Can't believe its been that long and progress is definitely a slow one, and bad days are a given, but I've learned patience and having a positive outlook are very important. Just know that you are not alone!

[JanW]

Sorry, not swapping with cancer!

Welcome Stephanie -- yes, at the Symposium they spoke about a new center for WG being established at University of Utah. I have not looked into it (I live outside of NYC and see specialists here), but I'd imagine that you could get information on the Vasculitis Foundation's website. I know that I, and many others on this forum, would suggest seeing a WG specialist to manage your care, if it is at all possible.