17 years old, diagnosed three months ago

[katarzena]

Hi everyone
My name is Katarzena, from Europe, 17 years old. I've decided to sign up to this forum since I've been diagnosed with this disease (unfortunately) few months ago.
I have read some stories and after reading them I think I've been quite lucky. Or not?
My Wegener's only caught my sinsues (bloody nose for over a year - the reason why I went to hospital) and nothing else. Lungs fine, kidneys involvment minimal, First month I've been on 32mg prednisone (awfull side effects of course), second on 16, after that one month on 12mg and next week I'll be on 8mg for a longer time as my doctor said. After first month my cANCA went down a half (sorry for my bad english) and doctor was really pleased. She said since my test are really good and because of my age everything will turn out well. But after reading this forum I realised it is not curable. I can only achieve remission and the disease can come back. How sad is that She never told me that. I try to think positive but it's really hard especially now when I've heard that I will never be cured.
I've been on rituximab and cytoxan since I've been diagnosed, I'm almost done with it (4 more treatments of cytoxan) No side effects at all of these chemo therapies. Why does everyone say they are really bad? They helped me A LOT!

I have a few questions and hopefully someone will answer them
- Has anyone achieved a long term remission and for how long?
- I know each case is different but do you know what could be the next drug for me (doctor said she will reduce the prednisone and give me another drug that is not steroid and what are the side effects of it?
- Will the side effects of prednisone go away after I'm on 8mg daily? I hope they will.. My moon face is a lot les visible since I've been on 16mg and 12 but I can still see it and it0s really hard going through high scool not looking like yourself.
- What do you think will my prednisone be stopped after some time since my health is going really well? ( I didn't ask this my doctor because I didn't want to moan to much, but I guess I will ask her next time I see her because I really hate steroids no matter how helpful they are.)

Thanks a lot.

[Natalie]

Hi Katarzena , Im glad you joined up you will fine the answers your looking for here and a lot of support too. Your doing really well by the sounds of it I dont want to coment on your Questions because there are others on here that can answer them better for you . keep your chin up sweety ,Nat oox

[Barbara1966]

Kasia
Witam w klubie skad jestes z Polski i gdzie mieszkasz Jak twoja mama chce porozmawiac niech dzwoni 860-314-1061

Basia

[elephant]

Katarzenia, yes the prednisone side effects ( moon face and some weight loss) will go away. There are long term side effects like osteoporosis when your on prednisone for a long time. A
fter you have been on Cytoxan or RtX they will put you on a less toxic drug to keep you in remission ( Cellcept, Imuran or methotrexate).
You are doing great, and thank goodness they found this early!

[JanW]

Welcome Katarzenia - there are certainly some people that never get off pred and there are people go into drug-free remission for years. Each of our cases are pretty unique, so you never know where you are going to fall. When I was diagnosed five months ago, my doc didn't even put me on pred -- he is going to try to get my disease into remission using only methotrexate, and if that doesn't work Cellcept or Imuran. I have found that to be an unusual protocol compared to the folks here on this board -- almost everyone is, or has been on, at one point, prednisone. I have positive ANCA and high P3 and have already had successful surgery to open my windpipe (what a relief). I also have a saddle nose and some joint pain and ankle swelling that I believe is related to the disease, but other than that I am living a normal life with a family, kids, job, etc. and there are many people like that with WGs. Yes, your doc should have told you that there is no cure, but if your prognosis is good you should be able to live a long and mostly healthy life with this disease.

[Sangye]

Hi Katarzena, it's nice to meet you! I'm sorry you have to deal with this at such a young age. I wonder if your doctor didn't tell you Wegs is incurable because she didn't want to scare you. However, it's important to learn everything about this disease and the drugs that you can. You have to be armed with knowledge.

We'll answer your questions a little at a time, okay? Remission is a big question. There are 2 types of remission: drug-free and drug-maintained. Drug-free means you don't require any drugs to stay in remission. Drug-maintained means you have to stay on some drugs in order to stay in remission. Some people are in remission for many years and others only for a few months. One of our members (Mike Caven) was in drug-free remission for 27 years and had no symptoms at all of Wegs. Another one of our members (Jack) has been in remission for many years (25??) but has had to stay on drugs to maintain it. Some people have to stay on steroids and some can stop them. Right now there's no way of knowing which you'll be.

Right now, the best thing for you to focus on is getting through the initial treatment. Bring your list of questions to your doctor. We can give you our answers but your doctor should be explaining everything to you also. The more informed you are, the better you can get proper treatment. Take good care of yourself

[katarzena]

Thank you very much for your kind words, I'll try to think positive and hopefully achieve remission soon! I thought I will be put on methotrexate, imuran, septra or something like that 'cause I have searched on about wg on internet. I was wondering, since I'll probably be on one of these drugs for a longer time, has anyone of you had any side effects of it? I have no problem taking pillls everyday for the rest of my life but only if they don't have awful side effects like prednisone. I know you don't get moon face with chemo pills but what about hair loss? That scares me a bit.
Thanks for your answers

[elephant]

All these drugs have side effects and can cause cancer, but I rather live. Just need to stay on top of your symptoms like ( fevers, swollen glads, losing wieght, weird looking moles or other weird skin stuff). We are all at high risk of skin cancer and other cancer's because it suppresses our immune system. I wear sunscreen and try to eat a healthy diet. I exercise 4 times a week. I have been on these meds steady for 21 years.
So glad you are asking questions and learning about this. You are smart!

[pberggren1]

Wow, 2 people from Croatia!

Sebastian is the other guy from Croatia.

[Doug]

Katarzena ~ I'm glad to have you on the forum, too! We will nag you to do many things, but the single biggest point, after learning all you can about Wegener's granulomatosis and it's treatment (Sangye took care of that point!), is to take that knowledge with you when you see your doctor or doctors.

The more you understand what is going on, the better the questions you will and can ask, and the more you can be deeply involved in assuring yourself that the care you are receiving is the care you need.

Patient-doctor: You are first in that relationship, and any doctor who gives you a sense that you aren't their main concern needs to be dropped for one who does see you as first. You are an important link in your own treatment!

Front Page | Vasculitis Foundation Go to this link, and you will find a wealth of information on all aspects of WG. There are other excellent links, and people on the forum will bring them to your attention as the need arises.