Accepting Wegener's at 19

[cwetter]

Hi my name is Catie. I was diagnosed with Wegeners in May of 2013. I have been sick since sixth grade. It all started with a pseudo tumor in the orbit of my eye. I was put on high doses of steroids and after months went into remission. I was completely fine until my sophomore year of high school. I got the flu and for some reason couldn't shake it. I was exhausted all the time. Months went by and I was still exhausted. I started to get really bad joint pain. Months and months went by and this became my new "normal." I was barely making it through high school. The doctor told me I had Valley Fever, so he gave us the meds but the next day I was completely back to normal. Summer was coming and throughout the whole summer I was my self again. My second day of Junior year I got sick again. All of my symptoms came back. We kept going back to the doctor but he only kept telling me that I was depressed and had an eating disorder. We couldn't get a referral because he had to sign off on it and he was sure I was depressed. We finally went to a doctor my teacher recommended to us and he ran some tests. My kidneys were failing. So I was then diagnosed with kidney disease. I began to accept I was never going to have a "normal" life. I eventually graduated from high school and moved to Rochester for College. After my freshman year of college I got pneumonia. I started coughing up blood and my symptoms started to get worse and worse. They began to suspect I had Wegener's so they did a biopsy on my kidneys. I was hospitalized and given IV pred. I am currently doing chemo and high high doses of steroids. I had to move back home to Arizona because the chemo started to get so bad. I still have a hard time accepting I am sick. I am nineteen and I feel so old. I am worried about the treatment I am getting because I know cytoxan can affect you fertility. I love kids, I am a nanny and am studying to become a teacher. Being sick isn't easy and nobody understands unless you are going through it yourself. Someday I feel positive and others I want to shut down. I hope one day I was have a "normal" life and be able to live my age.

[NikkiNicole]

Welcome Catie.
I am so sorry that you have to face this at such a young age. I am 33 and recently diagnosed. I'm not in the advance stage that you are but I feel for you. There is a hard balance of trying to go through the emotions but try to find the new normal and live. I also have very bad days and then I have good days both mentally and physically.
You'll find you are in the best place you could possibly be as far as support goes. This place is amazing. Everyone is affected by Weg's in so many different ways. We are kind of like snowflakes, no two stories are exactly alike. But, we are all Weggie's and we are all in this together.
I hate that you have to be going through this but I am glad you found us!!

Take care, love, I hope you have better days ahead.

[whatthewhat]

Catie, I'm glad you're here, too. You have been through the hardest part - those years of misdiagosis & undertreatment. You must be reeling, understandably. There is a lot to grieve, but try not to borrow tomorrow's troubles to use today <3 Dealing with stress in a healthy way is such an important tool for a weggie to use. I do hope you are being seen by an experienced (in weg's) rheumy. - treatment protocols can be different in younger patients. Write here ofyen; it helps. <3

[Palmyra]

Hi Catie,
I am impressed and happy for you to have found this forum and pleased that you are brave enough to post about your condition. Acceptance that you find yourself here must be very difficult indeed. As you look on the many individuals that are members, you will see several that are not unlike you. My own daughter was diagnosed with Crohn's at 14, and later with GPA (Wegener's) at the age of 20. She never joined a support group (to my disappointment) but has been able to accept her chronic disease and move on to a productive and happy existance. She is now 27, in remission and working full time. Hard to believe because not too long ago she was very, very sick. She too has bad days and good ones. She has learned to rest a bit on the bad ones...On the good one's, oh my! She lives life fully! I am proud :thumbsup:

I hope you will find support here, learn ways to manage your condition in a manner that suits you and find you are not at all alone. That you are from Arizona is a good thing...the Mayo Clinic has a hospital in Scottsdale. There is a member on this site that has used that hospital, and he might be able to give you guidance or support.

I really like what NikkiNicole had to say above. You will find that you can find a 'new normal' now you know what you are dealing with. Best wishes to you!!!

[cwetter]

Thanks!! I am really happy to hear you daughter can like a full life. I am constantly worried about weather or not I will be able to work or finish school, have kids, and much more. If you don't mind sharing. What kind of treatment did you daughter get. I am on high doses of pred and cytoxan. I am really worried about the cytoxan when it comes to fertility.

[annekat]

Welcome to the forum, Catie. You will now feel that you are not alone with this disease and there are plenty of people to talk to for info and support. I'm glad you find the comments already made encouraging. And I do believe that women who have taken Cytoxan have gone on to have children. I remember some threads where that was mentioned. You might try some searches in the archives.

Best of luck with your treatment and getting back to a state that is close to normal. Keep us posted.

[Wegetarian]

So sorry to hear about your troubles. Glad you found this place though, at least I feel I've received a ton of helpful info here.

How long have you been on pred and cytoxan? have they helped your symptoms?

[drz]

Hi my name is Catie. I was diagnosed with Wegeners in May of 2013. I have been sick since sixth grade. It all started with a pseudo tumor in the orbit of my eye. I was put on high doses of steroids and after months went into remission. I was completely fine until my sophomore year of high school. I got the flu and for some reason couldn't shake it. I was exhausted all the time. Months went by and I was still exhausted. I started to get really bad joint pain. Months and months went by and this became my new "normal." I was barely making it through high school. The doctor told me I had Valley Fever, so he gave us the meds but the next day I was completely back to normal. Summer was coming and throughout the whole summer I was my self again. My second day of Junior year I got sick again. All of my symptoms came back. We kept going back to the doctor but he only kept telling me that I was depressed and had an eating disorder. We couldn't get a referral because he had to sign off on it and he was sure I was depressed. We finally went to a doctor my teacher recommended to us and he ran some tests. My kidneys were failing. So I was then diagnosed with kidney disease. I began to accept I was never going to have a "normal" life. I eventually graduated from high school and moved to Rochester for College. After my freshman year of college I got pneumonia. I started coughing up blood and my symptoms started to get worse and worse. They began to suspect I had Wegener's so they did a biopsy on my kidneys. I was hospitalized and given IV pred. I am currently doing chemo and high high doses of steroids. I had to move back home to Arizona because the chemo started to get so bad. I still have a hard time accepting I am sick. I am nineteen and I feel so old. I am worried about the treatment I am getting because I know cytoxan can affect you fertility. I love kids, I am a nanny and am studying to become a teacher. Being sick isn't easy and nobody understands unless you are going through it yourself. Someday I feel positive and others I want to shut down. I hope one day I was have a "normal" life and be able to live my age.

Well written and nice intro. Sorry you need to be here but this is the best resource to help you deal with your feelings besides a personal therapist which many of us found very helpful. It is hard to get your mind around and adjust to all the changes in your life that Wegs create for most of us. But like a fellow Weggie told me when I was diagnosed and feeling down: "If you survive the treatment, things do tend to get better!"

[Alysia]

Dear Catie,
my heart is going out to you, so young and already going through so much hard times...
can you ask your doc about getting rituximab (rtx, rituxan. also called Mabthera) instead of ctx?
my doc said that with young weggies they prefer rtx then ctx.
it is very helpful and the side effects are less difficult.
you are not alone, we are with you. the amazing people here helps so much with info and support.
just continue writing everything.
if you have to be a weggie, at least you have warm weggie family here :hug2:

[mishb]

Hi Catie and welcome.

I second what everyone above has said.

I hate the fact that people so young can get this sucky disease - it's bad enough for us older ones.
I would hate for my own daughters to deal with WG.......I'm glad it chose me and not one of them :unsure: :razz:

Take care and .........

[Palmyra]

Thanks!! I am really happy to hear you daughter can like a full life. I am constantly worried about weather or not I will be able to work or finish school, have kids, and much more. If you don't mind sharing. What kind of treatment did you daughter get. I am on high doses of pred and cytoxan. I am really worried about the cytoxan when it comes to fertility.

My daughter received Rituximab (Rituxin) after a very brief trial of methotrexate had no effect. She was never placed on cytoxin, as we and her doc were concerned for all the same reasons you may be. The positive effect of Rituxin (RTX) was almost immediate. In the 7 years that she has been on RTX, she has had some issues with depression of her immune system and subsequent infections. But I am confident it was the right choice for her.

That process and initial decision went very smoothly as she was seen initially by one of the Vasculitis experts (at the Mayo Clinic). His recommendation was to use pred and RTX to get her first into control, then get off prednisone as soon as possible. We were both very scared at first, but in retrospect it was absolutely a great decision. No regrets here!! Please feel free to post me privately with any questions.

All the best,
Jane

[rebekah]

Hi Catie, I'm so sorry to hear of everything you've been through, and at such a young age too. Sorry you had to move back home after a year away at college. I'm 22 and I just graduated from college, it was hard, but it can be done. I don't get to do as much as I did before, but it's all about learning to find your new normal. I've had weg's for 1 1/2 years now and am still trying to figure out my 'normal', it just takes time. What a great career goal to become a teacher. I understand the worry about cytoxan and wanting kids, but there are a few people on here that have had kids after going through treatment. Like Anne said, there are some threads on this site so you can find and read their stories, a quick search in the search bar at the top of the page may help you find them.

I am glad you found this group... I don't know what I would do without my Weg's family on here. I hope you get well soon and we hear only good news from you going forward.

[gilders]

Hi Catie, I am also new to this forum, but far from new to WG. I was diagnosed 19 years ago when I was 17. WG almost took my life at 17. I really had the most severe form, BUT there is good news (and some bad in my case).
The good news is that although my WG was so aggressive, approximately 18 months after I started treatment I was back to almost full fitness (and I'm sure you will be too). If you read my other posts, please don't let them scare you! It is true that I have had quite a few relapses and my health has always been on a downward spiral, but that is me, not you. I also have other medical issues that are not related to WG, so don't expect to be as ill as I am.

I have also heard of women becoming pregnant after Cytoxan. I don't know if changing to Rituximab is feasible half way through treatment, but asking won't harm.

Good luck. I'm sure things will get better and if you don't relapse in the future WG will not rule your life and in years to come you'll remember it as an insignificant illness from when you were a child, I hope.

[Sjap0655]

I Catie, I am happy you found this group as well! I am newly diagnosed from January 2013 after having my first son! I too am trying to find a new normal. I am 36 but having to adjust my husband and infant to WG's has been and will continue to be a challenge. But as so many have said, this is an awesome support group, lots of great advise throughout the site and many helpful tips on creating a new normal that benefits your health! Please, please keep reading the post, inbox ask questions! AND most importantly make sure to have consultation with a true Wegener's Doctor. I also want more children, so they are absolutely possible in your future! I just joined a facebook group with women with vasculitis disorders who are having babies...they discuss which meds they are taking, doctors recommendations and tips for the future. Here is the link https://www.facebook.com/groups/103915323070376/

Welcome again and if there is anything I can do to lend a hand, please feel free to inbox me.
Sheila

[carriej22]

Hi Catie,

I was diagnosed at 22 (am now 24) so I wasn't a whole lot older than you when I was diagnosed. I started getting sick when I was 18; right after I graduated college. However, it took them a long time and several sinus and other surgeries to figure it out. When my kidneys starting going then they figured it out real fast. Your story actually sounds quite similar to mine - I was diagnosed with pneumonia first too.

Have you inquired about having Rituxan rather than cytoxan? I was worried about the human babies thing too.

For awhile; I didn't think I was ever going to have a normal life either. I couldn't go in the sun, and I couldn't drink alcohol and go out with my friends or do anything that people in my age group were doing. However, it gets better. I know you are tired of hearing it; but don't give up. Don't let it get you and always try to keep one foot in front of the other. I think half the time these diseases make people feel bad about themselves and it doesn't let them get to their full potential. I never gave up; and even when I could hardly get out of bed - I still got out of bed. I did everything I could to remain independent; it was and still is hard work - but don't let that stop you from doing what you want.