Newly diagnosed

[Momof3]

Hi, I just recieved diagnosis of WG 2 weeks ago after symptoms for 10 months. I was started on prednisone and methotrexate. I was diagnosed w/o a positive biopsy, I have positive ANCA and protenase3 but the biopsy of the sinus and lungs came back negative. I have been having difficulty breathing since last May when I got strep throat from my kids. I have been praying that this would not be the diagnosis as I have been going from one doctor to another all year, but I guess it is. Now I am trying to deal. So far my kidneys seem unaffected so that is a blessing. I am hoping the meds work quickly and at low doses, I am wondering is remission determined just by symptoms or is the ANCA titer a reliable monitor? I am also wondering if my breathing will ever go back to normal? Will I be living on these meds forever or do you ever get med free? I am on my second rheumatologist and am frustrated with the non-responsiveness of the pulmonologist -I called to see if I can be seen because I can't breath at night when I am trying to sleep and they tell me the next appointment is in 3 weeks- am I supposed to just go to the ED? Does anyone know if moving from one climate to a very different one can trigger this? Is is stress or just bad luck? Is anyone involved in clinical trials?
I guess I am still at the crying, I want my old life back phase. Thank you for this website, it is nice to not feel alone.

[KtheC]

Welcome to our little corner. No you're not along. I went through the same emotions as what you are going through now. It does get better once you start getting better. For me the hospital stay was the worse. The people were great, it was just the lonleyness of it. Sorry but I don't have answers for you but some one here might. Most of all try to keep positive. This helps a great deal.

[Jack]

Hi,
Remission is something we all hope for, but it is not like a switch. It comes on gradually and is mainly determined by how you feel. None of the tests seem to be that reliable as predictors and some of us seem to have opposite results to others.
Wegener's is a very unpredictable disease, we all have different symptoms to varying degrees. Some get better with time, some worse. You have been lucky enough to be diagnosed early and it sounds like no serious damage has been done so your prognosis is better than most.
I'm sure lots of other questions will arise, it all takes some getting used to. Please feel free to discuss anything on these pages, there is a lot of help and good advice available.

[Sangye]

Hi,
Glad you found this forum so quickly after diagnosis! Jack's comments were right on, so I won't go over that part again.

We all sure understand the grieving that goes along with getting a diagnosis like Wegs. Being diagnosed with a chronic illness turns your life into something it wasn't before. You can be okay, though. Don't deny yourself the times to cry, and don't get too bogged down in them, either. You'll find your way.

Is your rheumy a Wegs specialist? That is necessary with this disease. A typical rheumy won't have the experience you need. It's not enough to treat a Wegs patient "by the book." Do you know about the VF Wegs docs?

Can you describe the breathing problem you're having at night?

[mickoko]

Hello and welcome,
Like you I am new to this site but have had WG for some time now. This is a good site with people who understand what we go through.I had found it very helpful just reading peoples stories and knowing that your not alone as I first thought when I was diagnoised with this illness. My advice is to take things as they come and make the most of the good days.
I always feel better on warmer days, but when I asked my specialist to send me to warmer climates he just would not (its worth a try!).
Keep your chin up.

[andrew]

Welcome to the WG club! As Sangye said, this disease is very unpredictable. Remission is something we hope for but don't make it the thing that defines success. Concentrate on feeling better rather than whether you're in remission or not. Excellent that your kidney's are unaffected. Very good news.

I am also wondering if my breathing will ever go back to normal?

You'll get ths response a lot : WG is a strange beast and it affects people different ways. It all depends on the affect it has had on your lungs and how much damage it has caused. Has the doc had any comments on scans of your lungs?

Will I be living on these meds forever or do you ever get med free?

Many people become med-free and yet others take them for life, it's hard to tell. For me they have become part of my life and I can't even remember now what it was like not taking meds every day. There is something we call the 'new normal' which is our new life with WG. It can involve taking things slower than we used to, taking our meds at the right time etc etc but whatever our new normal involves, it's based on how we feel. If we need rest, we rest....never get in the way of a Weggie that needs rest...aye yai yai!!

I called to see if I can be seen because I can't breath at night when I am trying to sleep and they tell me the next appointment is in 3 weeks- am I supposed to just go to the ED?

If you're having issue breathing at night (or whenever in fact), if you can't get in to see the doc today, go to ED. It's not worth waiting for it to get worse. Be as demanding as you need to be to get seen.

Does anyone know if moving from one climate to a very different one can trigger this? Is is stress or just bad luck?

The actual cause is unknown. There is a general consensus (I think) that stress is involved somewhere along the line. Altering climates can affect breathing if lungs are involved. I was diagnosed with WG when I was living in the tropics. It was way harder to breath in the humidity there than it is here, 4000km south.

Is anyone involved in clinical trials?

Not me and no one here that I know of.

I guess I am still at the crying, I want my old life back phase.

Yeah, it gets that way to start with. It's part of the grieving process. Whatever happens and whatever you feel, know that you're always welcome here and you'll always find someone that can relate. You can even just log in to have a scream and a cry if you like (even if it is text-based).

[Momof3]

Thank you all for your calm, words of encouragement. I asked about the climate change because we moved from California to Seattle 6 years ago and I am wondering if the wet/cold/mold increased my tendancy towards a whacked out immune system.
Does anyone use diets or homeopathic stuff to try to control inflammation?
I am slowly moving into acceptance, thank you all.

[Momof3]

I am having a hard time breathing when I lay down. I can't sleep on my side at all anymore, like my lungs get squished and I don't move any air. I can sleep on my back but I have to sit up every few minutes to get a deep breath, that goes on until I am exhausted into sleep. My poor husband! I should probably get my own room. Does this sound like anything you have experienced?

[andrew]

I am wondering if the wet/cold/mold increased my tendancy towards a whacked out immune system.

Probably not but the mould wouldn't help. Try and steer clear of breathing in any of the spores.

Does anyone use diets or homeopathic stuff to try to control inflammation?
I am slowly moving into acceptance, thank you all.

Some Homeopthic remedies can be good but you need to be careful. Check this thread for some more info: http://www.wegeners-granulomatosis.c...treatment.html

I am having a hard time breathing when I lay down. I can't sleep on my side at all anymore, like my lungs get squished and I don't move any air. I can sleep on my back but I have to sit up every few minutes to get a deep breath, that goes on until I am exhausted into sleep. My poor husband! I should probably get my own room. Does this sound like anything you have experienced?

I'm the opposite (hard to breathe lying on my back) but that's because I'm a *cough* 'cuddly' *cough* and not because of the WG

I'm not sure what would cause what you're experiencing. Hopefully someone else here can help you out.

[jola57]

mickoko, hi - welcome - you are in the right place to get as many answers as you need. I am involved in a study out of Toronto - it is a genetic study. Nothing to report as yet.