Any Advice Welcomed! Just Diagnosed!

[Stephanie78]

My husband (35 years old) has just been diagnosed with WG. He is being sent to a Lung specialist and has a CT scheduled for the 26th. The doctor (ENT) did not offer much information on this disease other then to say it is an immune disease and that he would have to be under a Lung Specialists care.
Since the doctor left the results via voicemail at 5:05pm we knew NOTHING about WG. Against my good judgement I decided to "google" it and made the mistake of reading numerous websites. I didn't have the heart to tell my husband most of what I read.
My husbands ONLY symptom is that he has a stuffed up nose. We moved to NC from KS last October was a year ago. As we approached the Spring (Last Spring) he though he had allergies. He didn't see a doctor due to the fact that Allergies run in his family. Since it doesn't get too cold where we live it is not abnormal for some people to have allergies all year round. Over the past month or so it has become worse. He use to run however due to the severness of the stuffiness he couldn't run due to not being able to breathe. He finally went to an ENT thinking he had pollups (sp?) and he put him on an antibiotic as well as a nose spray for 5 days. He had his follow-up this past Monday and it was discovered that nothing had changed. He then sent him for bloodwork and scheduled a CT. Yesterday he received the results that it was WG. I have read a lot on line since getting the results and realize that most patients find out only after they have kidney/renal failure.
Any and all advice would be great concerning this. Please Educate us, not on what you have read but what you have experienced. We have two kids (14 and 7) and the NOT knowing is terrifying.
Thanks!
Stephanie

[drz]

My husband (35 years old) has just been diagnosed with WG. He is being sent to a Lung specialist and has a CT scheduled for the 26th. The doctor (ENT) did not offer much information on this disease other then to say it is an immune disease and that he would have to be under a Lung Specialists care.
Since the doctor left the results via voicemail at 5:05pm we knew NOTHING about WG. Against my good judgement I decided to "google" it and made the mistake of reading numerous websites. I didn't have the heart to tell my husband most of what I read.
My husbands ONLY symptom is that he has a stuffed up nose. We moved to NC from KS last October was a year ago. As we approached the Spring (Last Spring) he though he had allergies. He didn't see a doctor due to the fact that Allergies run in his family. Since it doesn't get too cold where we live it is not abnormal for some people to have allergies all year round. Over the past month or so it has become worse. He use to run however due to the severness of the stuffiness he couldn't run due to not being able to breathe. He finally went to an ENT thinking he had pollups (sp?) and he put him on an antibiotic as well as a nose spray for 5 days. He had his follow-up this past Monday and it was discovered that nothing had changed. He then sent him for bloodwork and scheduled a CT. Yesterday he received the results that it was WG. I have read a lot on line since getting the results and realize that most patients find out only after they have kidney/renal failure.
Any and all advice would be great concerning this. Please Educate us, not on what you have read but what you have experienced. We have two kids (14 and 7) and the NOT knowing is terrifying.
Thanks!
Stephanie

Welcome! Sorry you had to find us but this is best resource you will find on line. I was diagnosed a year ago and you are lucky to get treatment before it got to kidneys and lungs cause many of us weren't that fortunate. With good treatment the prognosis for improvement with an early diagnosis is very good. Check the Vasculitis foundation website for info on finding a good doctor in NC. There are some well respected experts in your area and it is important to have some one with good experience in treating Wegener's to get good results.

Read as much as you can here, search for info on topics of interest, and feel free to ask any specific questions you have.

[pberggren1]

The best advice I can give you is to see a Wegs Specialist directly or get your local doc to consult with one ASAP to confirm diagnosis.

You will have to follow blood work like: CRP, ESR, WCC, ANCA, Creatinine, etc.

Did they do a biopsy of his nose to get the diagnosis of Wegs? I just want to know how they decided it is Wegs. I do believe there is at least one Wegs specialist in Kansas City but am totally sure. I think Dr. Abdou is there but he is retiring I think. He is older and is one of the respected Wegs specialists. But I am sure you will find another one in KC that has worked or trained with Dr. Abdou. His number is: 816-531-0930.

I hope you get answers soon. Why so long to get a CT of chest? Have they done one in the recent past or an x-ray? Is he coughing up blood or mucus?

[Stephanie78]

Thanks for the advice.
The only symptom that he is having is not being able to breathe out of his nose. They have not tested his kidneys, however I have read that most people do not find out until they are in kidney/renal failure?
We are now in NC not in KS. We moved from KS to NC 18 months ago. I'm not sure the specialist they will be sending him to here. The doctor suggested that it COULD be an immune disease on Monday (This past Monday April 11th) when he had his follow-up. He then sent him straight to have bloodwork done. He set up the CT at that time as well (Not sure why he scheduled the CT at the time) They did 2 types of blood test. One was to check levels and the other was to see how the blood settled. They came back abnormal insinuating that he had WG (Again remember I am only going off of what the ENT has said) we just received this information last night. My husband has a call into the dr to get the appointment with the Lung Specialist who may OR may not make the CT a sooner date.
He is not coughing/wheezing or anything of that sort. The only problem he has had is with his sinuses. It began where he felt like his nose was stopped up. He figured that he was falling in his moms history of having pollups (She had to have sinus surgery). When he went to the ENT a couple of weeks ago he said that his nasal passage was completly swollen closed (Hence him not being able to breathe). He gave him a medicine and the only change was that he started having puss like mucus drain out of his nose. He has lost weight over the past few weeks but we are not sure we should associate that with whats going on.
We have no clue if is has become aggressive however I can say that the nose part is the only symptom he has had. Hopefully the specialist can enlight us more. Please advise me of anything he should ask when he goes to the appointment.
Thanks

[drz]

Just ask for some routine tests to make sure it is not active in lungs or kidneys since symptoms may not show up up till much damage is already done.

[pberggren1]

I would get a chest x-ray ASAP just to be safe. Weight loss is a sign of active Wegs.

Nancy Allen is listed with the Vasculitis Foundation as a Wegs Specialist. She is a Rheumatologist in Durham. Her number is: 919-684-2965.

I would get to see her or consult with her ASAP or another Wegs doc in the area. There are only a few Wegs docs around, mostly at Mayo, Cleveland, Boston, JHU.

[Jack]

Please Educate us, not on what you have read but what you have experienced.

A very good thing you will discover about this site is that almost every post is based on personal experience and you can believe it 100%. However, you have to know that the disease is very diverse and no two people are affected in the same way and neither do they react to medication in the same way. This is why it is so important to be treated by a doctor with a lot of experience in treating Wegener's. There is no standard case profile or treatment regimen!

You must get the tests made for kidney function! The initial tests are just very simple urine dip tests and there is no excuse for any doctor to not do them. Renal failure has few symptoms and can occur very quickly. Mine failed while I was being treated in hospital by the ENT department and was terminal before eventually being detected. I now have a renal transplant.

Sorry to sound a little alarmist, but quick treatment is vital to long term prospects.

[NicShaf]

Stephanie,
Welcome to the site, you will find great advice here.

I would suggest a chest x-ray at the very least if they can't get your husband in for a CT for a week or so. I had mostly sinus involvement in the beginning, and they saw my lung involvement on a chest x-ray when they thought I had pneumonia...really, it was Wegs. There were not really any signs of lung involvement, just felt like I had a cold.
And the tests for your husband’s kidneys are very important, like everyone said above. If they suspect Wegs, you should request that these be done ASAP. They were testing mine weekly until recently, now monthly. I was diagnosed in December, started treatment as of January 1st.

There are a lot of scary things on the internet, take what you read with a grain of salt. My husband and I made the same mistake when I was first diagnosed, we read some really scary stuff, and then after talking to my Rheumatologist...after a week of worrying...realized that it wasn't as bad as we thought. It is still a very serious disease, don't get me wrong, but it is treatable, and the earlier you catch it, the better. You will find more useful information here, in my opinion.

Best of Luck!

[Sangye]

Hi Stephanie, welcome to the group. Ditto to what the others have already said. I'm rather shocked that your husband's doctor would just leave a voicemail with such a diagnosis. He should have scheduled you for an immediate appt to discuss the disease and next steps.

Wegs can be a very bad disease and yes, people can lose their kidneys, lungs and even die. But not everyone has all those areas involved. Many people have only sinus involvement. If left untreated, it can progress into more systemic involvement, but you should not assume that he will necessarily have it worse than he does right now. Also, if his involvement is truly only sinus then he likely won't have to do the harshest drugs.

It is imperative to do as Jack and Phil said-- rule out lung and kidney involvement immediately. Neither is complicated and the blood work his ENT did most likely checked kidney function (it's routine blood work). Lung involvement can easily be ruled out with chest x-ray or CT. Even though he doesn't have lung symptoms, Wegs can do silent damage.

A rheumatologist is the doctor of choice to oversee his care, not a pulmonologist. Most important is to get in with a doctor as soon as possible.

Here is info that will help you:
http://www.wegeners-granulomatosis.c...need-know.html

[freakyschizogirl]

Hi Stephanie.
I am one of the ones Sangye mentioned who just has Sinus involvement. I didnt know til way after diagnosis that you could get "limited" Wegeners. I havent had any lung or kidney involvement so please dont worry too much about this until you know, but do make sure they test for it.

Welcome to the forum, the experts on here have given me such good advice which has oftened turned out to be invaluable.

Please keep us updated with your progress.