New to site/my son has Wegeners

[MsDonna]

Hello, my name is Donna and my youngest son has had wegeners since 2007. He woke up one morning when he was 13 yrs old with chest pains so bad that he could move. It took 2 weeks to find out the diagnosis and that was done through a lung biopsy. He was in remission from 2009-2013. In September of 2013 he started out with a sinus infection in then turned in to wegener's. He was sick for a couple of months before any of the blood work came back showing a relapse. He had the rituxan infusion treatments and they worked. He was doing fine until October 2014. He started getting sick again and everyone said that he just had a sinus infection. As time went on, he kept getting worse. I and he knew that it was wegeners. Finally in January of this year the blood work, chest xrays and CT scans showed the disease.

He went throught another round of Rituxan but he hasn't gotten any better. The Rheumatory physician and lung physician have no idea why he isn't getting better. What is also disturbing is that they don't know when he shows the symptoms but all the blood work saids he is ok. He doesn't feel like doing much of anything except sleeping and the prednisone has made him eat like crazy.

I'm really afraid for him and me. I lost another son 2 years ago from epilspsy. My youngest son got sick again a few months later. I just need encouragment and hopefully a solution.

Sorry this is kind of long but I have been holding all this in for so long.

Thanks

[im so blessed]

Oh Donna! I cannot imagine the pain you have been through! Losing a child has to be the worst thing to go thru on earth. I am so sorry for your loss! Do you have support around you? That is really important for YOU! For your son with wegeners, does he have a dr who knows wegeners? Also, i have heard that rituxan can take awhile to work...when did he get an infusion? I know people on here who do not show elevated markers in thier blood work, but have symptoms. It can be very confusing. I hope some of them offer thier empathy! Bless you! And please use this site whenever you need an ear! There are alot of caring people on here.

[JeanMarie]

Donna, I am so sorry you & your son are going through this.
I've no medical background, so take that in mind about everything I
say. First of all I agree with everything I'm so Blessed says.

Many doctors prescribe methotrexate or cellcept after Rituxan to
keep the patient in remission. Is your son taking anything besides
pred? Depression is a possibility too. Heaven knows this disease
gives all of us plenty of reasons to be depressed.

Another thing to keep in mind, unfortunately, is sometimes wegs
causes permanent damage that no amount of treatment will reverse. For
example, if his lungs are damaged & he's not getting enough
oxygen, he's going to be tired. Although more RTX won't help in that
case there are other things his lung doc could suggest that might
help. These are all things that he needs to talk about with his
doctors.
I hope this helps—good luck to you both!!!

[annekat]

Welcome to the forum, MsDonna. Good advice has already been given, and I'm sure more will appear. Every case of Wegener's is a little different and we don't all respond the same to treatment. My heart goes out to you for the loss of one son and now having to deal with this insidious illness in the other. Wegs can be tricky, sneaky, and unpredictable. It's good to be on a forum of the quality of this one, where you will almost always get quick answers and insights. Most doctors just don't have the time, or won't take it, to discuss any of it in much detail. That is, if they know anything to begin with. Some of us here go to world recognized vasculitis experts and others are not lucky enough to have easy access to them. I'm wondering where you are located and where your son gets treatment. It's important to know that he is getting the best that is available. Don't worry about the length of your post; it was fine, and I've seen much longer ones on here. Feel free to get as involved here as you'd like, ask any questions, rant and vent, share any news, and make use of the search function to see posts on different subjects in the archives. I hope being hooked up to this community of Weggies will make you and your son feel less alone. Best of luck in figuring out a treatment plan that will work better for him at this point.

[mishb]

Hi Donna and welcome to the forum. The best place to be when faced with this situation.

I am so sorry that you have to be here but on the other hand, I am glad that you are here for your son.
As I said, this is the best place to be, to get many answers.

We are not doctors so we cannot offer medical help but we can advise what it was/is like for us - so you can get a perspective from a personal view point, and who better to get that from, but from those that live with it.

There are some lovely members on here that are or have gone through the same thing with their children, and I hope they drop in and let you know how they managed or what worked for their child.

Even though your son is going through such a hard time at the moment, just remember that we are here for you as well, should you ever need to just scream out loud.

Take care

[Pete]

Hi Donna,

My condolences in the loss of your son. Just can't imagine the pain you've been through.

It's already been mentioned that your son needs a doctor who specializes in GPA/Wegener's. I was diagnosed at Ohio State University's medical center. I was in the hospital for five days before they diagnosed me by eliminating all the other conditions they thought I could have but didn't. I joined this forum about a year after diagnosis. My initial treatment team (pulmonologist leading with an ENT and nephrologist) really didn't have much GPA expertise (about 30 cases/year). I self-referred to a rheumatologist at Cleveland Clinic who now only sees Vasculitis (GPA is one form of Vasculitis) patients - over 700 individuals in a yeast.

I suggest that that you look at the list of consulting doctors on the Vasculitis Foundation's web site. They will often consult with your son's docs at no charge. If there's one reasonably close to your home, I hope your health insurance will cover a visit.

Please look at the different threads on here. Chances are pretty good someone has experienced something similar to your son. You'll also be able to find recommendations, advice, and a safe place to vent.

[whatthewhat]

Hey Donna, I am so so sorry. As one mom of a weggie to another, let me give you a big virtual hug. :hug2:I am glad you found this forum, and I hope your son joins too. Lots of good info, but let me add a few things. From my own experience and what I've seen, pediatric-onset Wegeners can move much faster than adult, making it even more important to keep on top of. I have not heard of anyone getting treated with just RTx and Pred, and it working. With a lack of energy I wonder what his iron levels are; our daughter has microscopic bleeds that cause her anemia. A done last thing, the Vasculitis Foundation does not include many rheumys we know and have worked with - there are good docs not on the list but the main thing is, in my mind, to have a doc (or rather, docs, as almost all weggies see more than just a primary doc and a rheumy but also other specialists too) who is knowledgable (experienced with WGs), up-to-date (on meds but also symptoms and whole person treatments like yoga), aggressive in treatment (monthly blood tests, referrals to other specialists), and able to connect with other specialists - or communicate thoroughly enough so that your son can take info from one doc to another. I hope this helps. -wtw

[annekat]

You can also try the VPAN website (Vasculitis Patients Advocacy Network), just google VPAN. They have lists of doctors recommended by patients in specific locations, many of whom are not on the VF list of specialists.

[MsDonna]

I do have support from friends, family, faith and my Bible study group. My son as a great rheumaory doctor and lung doctor. They are trying their best to find out why my son isn't getting better. His last infusion treatment ended in January, 2015.

Thanks

[MsDonna]

My son has been on methotrexate for several years and has continued to be on during the infusion treatments. I agree with what I'm So Blessed had to say also.
He does have some depression and is on something for it. It is just shocking how he went from last summer from working out every day, going out with friends, going to the beach with family and even going to Las Vegas alone. Then all at once he gets sick.

Thanks for all the information and the support.

[Trish1217]

I just joined this site and my son was just diagnosed 3 weeks ago. He is 18 years old. I am very sorry your son has to go through all of this. I really hope he gets better. I never heard of WG until 3 weeks ago. My son was in the hospital for 6 days with a sinus infection they thought had turned into pneumonia. Watching him get sicker and sicker and having doctors tell us he might have to go into ICU and that his symptoms mimicked HIV was terrifying. Why can't they do more research on this terrible condition?! My son is a senior in high school, with college scholarships lined up, and now I am afraid his future will be compromised. Good luck to you and your son.

[annekat]

Trish, welcome to the forum. I'm so sorry to hear your son has come down with WG at this important time in his young life, when he's looking forward to college. It sounds like it happened quickly and they were able to diagnose it before it dragged on and on and did a lot of damage to his sinuses and lungs. In my case it took 2.5 years of "sinus infections" before it went into my lungs and got bad enough that I was dx'ed. That is not uncommon. In your son's case, they can hit him early on with a good dose of the right treatments, and it could take a few months, but they should be able to suppress the progress of the disease, and he should feel a lot better. I can't say whether it will interfere with his college plans, but he is still young and if it has to be delayed, there is still a great deal of hope he can go on with his life as planned. I know it must be very scary. I'm glad you found the forum and we can be here for you to share our experience and knowledge, and to offer some support and encouragement. I know there are others here who were diagnosed that young or younger. Be sure to search the archives for any aspects of this you would like to know more about. The viewpoints and experiences on here are varied. So feel free to get on here any time and ask away or express your feelings. I wish I could answer your question about the research. I know it is being done, and has been for quite some time. That's another thing to explore in the archives or on the web. There's a trend lately to look at all autoimmune conditions as a group, in hopes of discovering what the "common thread" might be that causes the immune system to go haywire. Look for posts by Marta (see Member list under Community above.) She has been very involved in promoting this idea and has links to her blog and other resources on her posts. Also try the Vasculitis Foundation and VPAN (Vasculitis Patients Advocacy Network) for lists of doctors and lots of other information. Best wishes to you and your son, and let him know from us that there is life after a Wegener's diagnosis.