My 16 year old daughter just diagnosed

[renidrag]

Boston Medical Dr. Paul Monach and Mass General is Dr. John Stone
Dale

[Alysia]

Hi Ann,
why your daughter is not getting rtx (rituxan, rituximab, mabthera) instead of ctx ?

[annied]

My daughter has gotten rituximab twice and cytoxin once a few weeks ago, and will again this Wednesday. I have not heard of mabthera. She has pulse steroids every other week and takes prendisone daily.

[Lilly]

Hi Ann, I am glad the doctors are trying to keep her ovaries safe. I am also glad she is doing so well. I did well for many years, but I never went into a "true remission", I was treated with prednisone, cytoxan, and Bactrim DS (a new treatment for Wegeners pts who have severe lung infolvement) So I have been on the Bactrim DS for over 20 years, and have never had any problems being on the Bactrim all these years, and my lungs have been good. But any time I had a Flare Up, my Dr will control it with upping my prednisone, then weaning me off when my symptoms got better. It was working well. After 15 years of having the disease, time took its toll on my sinuses, and throat and my nose and eyes. I have had 2 total nose reconstructions because of "saddle nose", I have had several sinuses surgeries over the years, as the tumors that grow end up destroying the flesh in my nose. Honestly, It would take a book to tell all I have been through, but it happened slowly over time, and I was young and kept busy and in shape, and this helps the disease, I think, keep the flare ups down, and a good attitude, and just a positive attitude is good too. I admit this is a mean disease, and I am now on disability, and have a total knee replacemet because of wegeners. I went through menapause when I was 25 years old. I have osteoperosis, and other issues a person 20 years older than I have. I have had to slow down a lot. But this disease is different in every person, even though there are things that are the same, but i am so thankful that I have had the doctors that have treated me, and tried the new medications and treatments. I have had a very fufilled life. And I am still able to do a lot of things, but I have also been through some difficult times. My sinuses are basically gone now, I have glass tubes in the corners of my eyes to replace my tear ducts, that have been destroyed. I have crusting and scarring in my nose and throat, and my voice is very hoarse at nite. I have to irrigate my sinuses daily with medications to keep them from getting infected. The thing that most all of us "Weggies" have in common, is the fact that we are tired a lot, some from the disease, some from pain meds, some from both.......but we do not LOOK sick. People do not understand our disease. So they cannot identify! But websites like this really help you feel that you are not alone. So many people are worse than you, and some are not as bad as you....but we are all in the same boat! I hope and pray that your daughter gets even better treatment than some of us, because scientists and doctors are always finding things to help all diseases..... My mother found a website she thought you may be interested in.....Best hospitals for Wegener's Granulomatosis
(( wegenersdisease.org/Wegeners_hospitals.html))
Wegener's Disease doctors, ... Here you will find the Latest Wegener's Granulomatosis and vasculitis news and events. ...
Boston, Massachusetts. Doctor's:
I know this was a long response, and I was a bit all over the place. I am just tired right now, but PLEASE, If I didnt answer a question, or you have other things you would like to know, just ask me. Thats what Im here for. If you just need to VENT....because you are angry, upset or frustrated, I am here. I am also here to hear the GOOD things too. And I will share mine with you too! I hope we can keep in touch. I will be looking foward to see how your daughter is doing. Tell her to keep her head up, and if she gets depressed or upset, just chat with us! We have been there! Take care~

[Alysia]

I have not heard of mabthera.

mabthera is another name for rituxan.

[whatthewhat]

Hi Ann,

I am so glad you have found this forum. It is so incredibly helpful, and the people are so wise, and warm!

The ped rheum team at Children's Hospital Los Angeles, who see more ped Wegener's than most anyone, are happy to consult on cases, if you ever want your team to have another opinion. Our daughter is treated at CHLA, and we have been very happy with their experience and expertise!

& I agree with the above (Pete? Or Don?): ped Wegener's is different in some ways including how kids heal more quickly! All the best to her, and you,
wtw