hello there.

[donna fell]

hello.I,m quite lost at present and not really clear of how this is going to affect me and my future.I miss my work,my health and wonder if i will be able to walk without gasping for breath?Do these granulomas in my lungs subside or do they stay forever?Any and all advice would be appreciated.Just diagnosed this week and "blasted" with i.v pred and chemo.

[Sangye]

Hi Donna,
Welcome to the group! You've come to the right place to get answers and support. Everyone here will help you through this.

Wegener's is very unpredictable, so it's impossible to say exactly how things will go for you. But in general, as you undergo treatment your breathing will improve. The granulomas can heal over time if the Wegs is brought under control. Wegs is like a speeding train-- first you have to slow it down, then stop it, then reverse it. Treatment takes time and it varies widely between patients.

The IV pred and chemo are very difficult. We all know what you're going through.

Right now, I suggest you begin to get yourself as well-informed as possible-- from your doctors, research and fellow Weggies. Knowledge is power with Wegs. You will have to learn a lot about the disease, the drugs, the tests, etc... because you need to stay on top of your docs. We can help you with all that.

Ask anything you want, vent, whatever.... This is your group.

[RCOSSIO]

Welcome to our forum Donna. The information found here will be useful as your encounter with WG will vary. For the most part and I believe almost everyone here will agree the initial treatment is tough...but the good news is that if treated and you monitor yourself carefully you will notice how treatable this disease can be. I am not saying curable, or that you may or may not experience some setbacks, I think we all have.

But with a good Rheumy who understands your disease and treats it accordingly you should be back on track.

Also don't be afraid to question your doc over your treatment. I remember when my Rheumy twice dropped my prednisone from 20mg to 15mg (a 25% drop), i suffered some setbacks. And based on the information I received from others in this forum the next time I decided it was best to drop 1mg a week and now I am at 12mg of Pred without any setback.

[Doug]

Donna- Make a trip to this website for information in the form of Frequently Asked Questions for newly diagnosed WG patients:

Front Page | Vasculitis Foundation

This information will give you a general sense of what you are in for. We can help you by addressing issues specific to your WG.

Remember, this whole business takes time. The farther along you were when diagnosed, the more time it takes your body to heal. I was off work three months. Others were off less; some more. Each case is different, as you will hear over and over!

[onatreetop]

Hi Donna. I am let's say a newbie too. I was lucky enought to find this group that has made everything easier to understand. To hear from others, what they have expierienced is priceless knowledge. I myself didnt have to stop working. It was very hard to get through the first month or so but I made it and all of my clients seemed understanding. After the pred was cut down I felt much better. Didnt sleep much the first weeks. Between worry and meds all I could do was keep moving. I was lucky enough to have been caught early in the WG. So I have to be more aware of myself now that and I do trier a bit easier than before. Otherwise, I have 4 kids 14-6, a husband, my mother staying with us and 4 new kittens( my idea after I started the meds). I work 4-6 hours a day cleaning for other families than come home and do it again. So it can be done. Boy do I sleep better now. Welcome, and anything is possible, really!

[jola57]

Hi Donna and welcome. You are in the early stage of the treatment and it may be rough at times. We are always here for each other and anytime you have a question no matter how little it may be, you will find an answer. As nasty as this disease is it is very treatable, it may take time, sometimes very long time, and a lot of nasty medicines, but we are all still here to enjoy our friendships.

[jola57]

onatreetop, my goodness you clean homes, as I remember I couldn't clean my counter top without changing hands 20 times because of the hurt. How do you do it full time. You deserve a gold star (couldn't find one so you get a nice smiley face)

[Tim Roberts]

Welcome Donna! As a newly diagnosed Wegener's patient, I can very much relate to what you are going through at the moment. My doctor explained to me that the first number of months are worst as the side effects of the drugs, both the chemo and the prednisone, are very difficult and we can all attest to that. This forum has helped me greatly to become informed and certainly, knowledge is power and because the disease is so rare, I do not personally know anyone in my area afflicted with this. I am very fortunate for an early diagnosis and involvement in just one of my lungs but the group is correct that this disease and treatment can vary tremendously from patient to patient. My suggestion is spend some time on the internet and use the knowledge of this group to help you through this. They have helped me greatly and I thank God everyday for their knowledge and support and I have learned more from them than any other source. Welcome to the group and just remember that we will all survive this difficult disease together.

[Doug]

Donna- There are a few places you can find information on YouTube. I posted a few myself:

YouTube - phainopepla95's Channel

Mine deal mostly with Prednisone as experienced by me and where to find information. You've come onto one of the sources I recommend! There are other videos by other people that are equally worth your time to search out.

[onatreetop]

Jola57, Yes the hands hurt but the swelling does go away for the most part. And if I do it long enough I dont feel them anymore! So there! Thanks for the smilly It made me smile.