Accepting Wegener's at 19

[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.