New Member / Son of Patient

[zamanusta]

Hello everyone,

My father had some symptoms about his lungs 6-7 months ago. Doctors worried about lung cancer or tuberculosis first but they have diagnosed Wegener 2-3 months later after he showed first symptoms. Kidneys was inflamed when the diagnosis is put. We lodged in Hospital for 2.5 months and now we are free to be at home (Should be checked once in 15 days). We are having Endoksan, Bactrim, Anti-Potasium and Calcium support now.

I'm glad to be here to know eachother better, to help eachother and share the experiences. My father's illness started as soon as he gave up the cigarette and I want to research if it is related to sudden-giving up of cigarette. That is the another reason for me to be here, to understand the causes of illness and also if there is alternative ways to treat it, such as plants or any other something.

For example he was feeling very tired when we left the hospital but now, we are in a town, which has an high density of oxygen as a result of green forest mountains next to it and now he can walk kilometers! (I heard hat fatigue is related to anemia, because of restriction of bloodcells by inflamation.). An oxygen-high place may help patient to feel better.

I talked too much.

In conclusion, I'm here to share everything, to learn more, to know you and to help eachother.

Warmest Regards.

[Sangye]

Hi Zamanusta, welcome to the group. Don't worry about talking too much--that's what we're here to do! I'm glad to hear your dad is doing better.

Another member recently said they were diagnosed soon after quitting smoking. I think that's purely coincidence, though. There's nothing about smoking that would protect you from Wegener's (or anything else). As far as the cause of Wegener's, no one really knows in most cases. The only proven causes are silica and solvent exposure. The researchers have various theories about other causes of Wegener's-- infection, toxic exposure or genetic--but no real evidence to support any of it.

As far as alternative ways to treat it, unfortunately that is not possible. It can quickly worsen the disease and since Wegs is life-threatening, it could prove to be deadly. I'm a holistic physician and can't use the very remedies I believe in.

[Jack]

Hi. :)
I'm a little concerned that your father is not being treated with steroids in addition to Endoxan (Cyclophosphamide). Single drug use was the early form of treatment for Wegener's and was proved to be ineffective in the longer term, it needs a combination therapy. The fact that your father seems to be doing well at the moment is a good sign, but he will need very careful monitoring, kidney failure and heart damage can occur in Wegener's patients with few symptoms until it is too late. Is he under the care of a Wegener's specialist? This is something we always go on about on this site, but it is so important. It is a very tricky disease that follows no rules and should only be treated by someone having long experience with it.

Please do not resort to any form of alternative therapies. Unfortunately the only proven ways of controlling the disease at the moment are with highly toxic drugs with bad side effects. Remember that you are dealing with a potentially fatal condition here and any mistakes in treatment will probably result in permanent damage or worse.

[Cindy R]

I just wanted to put my two cents in about the smoking. My mom was still smoking up until the time that she didn't have the energy to walk outside. So I wouldn't think that quitting smoking would have anything to do with it. Doctors tell her she's possibly had Wegener's for two years, but just didn't know. Today is the 43rd day my mom has been in the hospital, and they say she can come home tomorrow. Prayers be with you and your family through this.
Cindy R

[Sangye]

I hope your mom comes home tomorrow, Cindy. That's a long time to be hospitalized.

[Lola]

Hi Zamanusta. Welcome to the group.

I wonder if stopping smoking might have been stressful for your dad. If so, it seems possible that the stress could have allowed the previously dormant Wegener's to flare. Just a thought.

[zamanusta]

Hi all (after 3 years),

My father did well, and now he seems very healty. We had 3 operations, 2 of them replacement of spinal bones with prosthesis due to side effects of steroids, and 1 of them is cataract operation, againg side effects of steroids. we are still going on checks, but rarely, once in 3 months, because of fine progress.

I can answer any question about our progress.

Warm regards.

[pberggren1]

I am glad you found us. Please feel free to start a new thread under new member introductions. We would love to get to know you and your father and your struggles with this disease.

[COWG]

Hi Zamanusta, welcome to the group. Don't worry about talking too much--that's what we're here to do! I'm glad to hear your dad is doing better.

Another member recently said they were diagnosed soon after quitting smoking. I think that's purely coincidence, though. There's nothing about smoking that would protect you from Wegener's (or anything else). As far as the cause of Wegener's, no one really knows in most cases. The only proven causes are silica and solvent exposure. The researchers have various theories about other causes of Wegener's-- infection, toxic exposure or genetic--but no real evidence to support any of it.

As far as alternative ways to treat it, unfortunately that is not possible. It can quickly worsen the disease and since Wegs is life-threatening, it could prove to be deadly. I'm a holistic physician and can't use the very remedies I believe in.

Sangye, I've never heard anything about silica or solvent exposure related to WG. Where did you hear that?

[pberggren1]

I know of a case near Missoula in Montana where there were some Weggies diagnosed that were in the mining industry that were exposed to silica I think. I remember reading about it in a VF newsletter many years ago.

[annekat]

I am glad you found us. Please feel free to start a new thread under new member introductions. We would love to get to know you and your father and your struggles with this disease.Phil, I'm just noting that this thread was started 3 years ago under New Member Introductions.

Zamanusta, I'm glad to hear your dad has improved so much in 3 years. Continue to keep us posted. I'm curious, where do you live?

[pberggren1]

So you are right Anne......lol. I must have not been awake that day.....lol.

[annekat]

As for the silica, I've heard of this, but mainly through the forum, and wouldn't be able to say where the proof is. As a potter, who works with silica-bearing substances every day, I certainly have taken notice. Usually the disease mentioned for potters is silicosis, a lung disease that is not related to Wegs. Keeping one's work area clean and minimizing exposure to dust from the clay and glazes is the most important thing. Wet clay and glazes aren't a problem, but inhaling the dry dust is. I think there've been some people on the forum who have been exposed by working in glass factories and the like, and as Phil says, anything related to mining. Silica is everywhere, really, but not always in the dry form.

[COWG]

Phil, My husband has worked for a long time with several solvents. This really interests me, as he is really not well right now. He has bronchial stenosis this last 10 months. I believe you have that too? We are really looking for help here on this forum about the treatment and any hope with this bronchial situation.. In his 12 yrs of WG, this breathing is the worst. We have had 1 RTX infusion and 3 cytoxin infusions. One broncoscopy, looking to do another. Could you tell me about your treatment? Sorry for being so long here.
I know of a case near Missoula in Montana where there were some Weggies diagnosed that were in the mining industry that were exposed to silica I think. I remember reading about it in a VF newsletter many years ago.

[pberggren1]

My breathing is affected mostly by scar tissue in the bronchi. I go for a balloon dilation every 3 or 4 months now. Is this the treatment you mean or with meds as well over the course of years since diagnosis?

[COWG]

Phil,
First, thank you for responding. You are a trooper, doing that balloon dialation every 3-4 months. Good for you...continue to be a fighter.
Yes, Rick had the balloon dialation done where they injected steroids. They are giving him the infusions to reduce WG symptoms, and to try to get on top of the bronch stenosis. Are you on meds as well, or doing infusions? In your experience, what is a long term plan for bronchial stenosis? Will symptoms finally subside?
A big heart of compassion goes out to you.

[pberggren1]

Well, I do get the rtx infusion once every 6 months now as part of my maintenance plan along with daily Imuran of 100mg. Is that what you mean by infusions?

As far as the stenosis goes in the bronchi it is very individual as how the treatment goes. For me it is quite severe in the left lung. My doc said I could go like this for many decades more without having a need for major surgery or lung transplant, but he also said that next year I might need a double lung transplant. I just take one day at a time and enjoy what I have and don't worry about the lungs. The shortness of breath can get scary at times and very frustrating but I know I have good docs that look after me. I know what to expect for the most part now with the stenosis. If no new scar tissue forms then I should be fine for many many more years. It is a scary thought to think of new scar tissue forming but there again I try not to think down that road.

[Alysia]

Well, I do get the rtx infusion once every 6 months now as part of my maintenance plan along with daily Imuran of 100mg. Is that what you mean by infusions?

As far as the stenosis goes in the bronchi it is very individual as how the treatment goes. For me it is quite severe in the left lung. My doc said I could go like this for many decades more without having a need for major surgery or lung transplant, but he also said that next year I might need a double lung transplant. I just take one day at a time and enjoy what I have and don't worry about the lungs. The shortness of breath can get scary at times and very frustrating but I know I have good docs that look after me. I know what to expect for the most part now with the stenosis. If no new scar tissue forms then I should be fine for many many more years. It is a scary thought to think of new scar tissue forming but there again I try not to think down that road.

Dear Phil,
we need you around for many many more years. you are our hero.
if you already survive so much, it means that you are very strong, and that God love you. so are we.
I hope that the worse is over now. I wish that from now on, only good news will come.
my heart and my praying is with you. take care :hug1:

[pberggren1]

I love you too Alysia. If it is up to me I will stick around for a long time yet and hang out with you guys.

[COWG]

Thank you Phil. I will share this with Rick. The infusions are like an IV that Rick does at the hospital. At least that's what they call them here in CO.
Your post encourages me....thank you. I also will be praying for you, along w/ Alysia. I hope it's ok to keep you posted. You are the only person we've heard of w/ Bronchial stenosis. We don't have anyone else to compare notes with, so that's why I joined this forum.
Have a good day :)
Well, I do get the rtx infusion once every 6 months now as part of my maintenance plan along with daily Imuran of 100mg. Is that what you mean by infusions?

As far as the stenosis goes in the bronchi it is very individual as how the treatment goes. For me it is quite severe in the left lung. My doc said I could go like this for many decades more without having a need for major surgery or lung transplant, but he also said that next year I might need a double lung transplant. I just take one day at a time and enjoy what I have and don't worry about the lungs. The shortness of breath can get scary at times and very frustrating but I know I have good docs that look after me. I know what to expect for the most part now with the stenosis. If no new scar tissue forms then I should be fine for many many more years. It is a scary thought to think of new scar tissue forming but there again I try not to think down that road.

[annekat]

There have been more people on the forum with tracheal stenosis... the bronchial does appear to be more rare.

[pberggren1]

I've sent you a private message COWG.

[stephwest]

Hi I am suffering with bulging discs in lower back, is that what your father had before the operation. I also have a torn lower back muscle (very Painful) which my physio said is a side effect of Pred, can you post more details of his back problems due to steroids. Also what level of Pred was he on with the back problems.
Many thanks