It started in 2010

[Sangye]

Hi Zoe, welcome to the group. I'm sorry for all that you've gone through already and at such a young age. Hopefully things will ease up and you will go into a long remission.

[renidrag]

Welcome Zoe, this is the best place to be, all here will help and support you. So young, it breaks my heart for you to have to go through this, but remember, remission does occur. I'm proof.
Dale

[Elena]

Hi Zoe. I'm 19 and was diagnosed with WG i 2009. So I know how it is to get this stinking disease at a young age. I'm currently in remission, and I'm studying and working. So don't give up, remission is very much possible although it might not seem that way at times. This forum is such a good help and you can get an answer to just about anything.

[Zoe]

Hi Susan, my brain involvement only relates to my pituitary gland and my hypothalamus which is being treated with minor medication. I have a neurologist however he is not a part of my treatment and I was diagnosed with the diabetes insipidus through endocrinology so I don't think I can be much help.
I am so sorry about your brain involvement, even though it is a minor thing in my case it was still very scary to think about the brain being affected.
My specialist is applying for me to get Rituximab and although I do not know very much about it at this stage, I was told that is can be helpfull if you have eye involvement. Other members on this site may be able to tell you more.
I hope that you get some answers, and i'm sorry that I can't help you more.
Stay strong, I am thinking of you
Zoe

[Zoe]

Hi Phil
Thanks for making me feel welcome.
It means so much to me that this site is here. When I was first diagnosed my mum thought that I should try and connect with people with a similar condition so I could stay in touch with the world as I was not well enough to go to school and my friends seemed to have forgotten me. But it was hard because I was scared I possibly a little in denial about the situation. I have since come to terms with my new life as a weggie as much as I can and I am so grateful for your support. Good (considering) to know there are some other NZers here.
When I was first diagnosed, we (my specialist, ENT surgeon and my mother) were discussing treatment. My specialist (respiratory) has a team of others (ENT, rheumatology etc) in where I live and another team in Christchurch (at another hospital). They put me on Azathioprene which is also an immunosuppresive drug as we all wanted to protect fertility. At the time he warned that he wasn't going to do anything that would put my health at risk and that if the Azathioprene didn't work, I should be prepared to go onto the ctx. Things seemed to be going well and I was responding to treatment until I developed the diabetes insipidus, we then moved me onto the ctx and are waiting to see if my application for Rituximab has been approved.
Hopefully as only on ctx for a few months, infertility will not be an isssue for me.
My main symptoms are headaches (possibly due to swollen pituitary which is being successfully treated) and fatigue/low energy, along with the usuals with Pred- weight gain, mood changes.
My meds are as follows:
Prednisone 15mg
Cyclophosphamide 100mg
Flucloxacillin 1000 mg
Omeprazole 40mg
Etidranate 400 mg
Calcium 500 mg
Vitamin D
Desmopressin 0.3 mg

[newweg]

Lots of drugs Zoe for a young person, but the name Weggie is cute and spunky almost! Our own little society! Keep well!

[newweg]

Thank you, you too!

[Al]

This is a lot of drugs, Zoe. I hope you are handling it all!

I'm sure that your doctor knows that Rituxan is approved for WG treatment in most of the world. It is no joy ride, from what I've been told (I've had only cytoxan myself), but not as dastardly as CTX. These things should not be happening to someone your age (or, for that matter, to my age, which is a lot of age!); please lt us know how your story works out!

Al

[pberggren1]

If I remember correctly another member on here, vdub, had his pituatary and hypothalamus removed.

[chrisTIn@]

Hi Zoe. Welcome to the forum, you came to a good place. Thanks for sharing your story, I wish you lots of succes and hope you 'll soon be in remission.