My Wegener's Intro

[thedudos1109]

Hello. I'm not "new" to this site. I've been secretly reading things occasionally when I find myself laying in bed at night trying to fall asleep. I like to see how this disease has affected other people's lives and treatments others have tried.

Anyway, I've decided to finally introduce myself and become an active member. I want to share my story and get advice, because there's a lot of you who seem to know a lot more than I do.

I was diagnosed with WG in 2007. I was 20 years old and it was pretty unheard of in Reno where I live. I had been diagnosed with viral meningitis a couple months previously, then prescribed depakote - which I was allergic to. I had audio and visual hallucinations. My parents thought I was on drugs so they took me to a rehab center. I passed all drug tests but I was acting so psychotic that they admitted me anyway to try to get new under control not knowing it was the depakote. While in this rehab center I was given multiple anti-psychotic drugs at high dosages. Eventually, long story short, I was sent to the near by hospital where I was in a catatonic state and in respiratory failure. I was in a coma for 6 weeks, having gran mal seizures. When I finally woke up, I was diagnosed with end stage renal failure stage 3. I was doing dialysis everyday and a lot of therapy to teach me how to walk, talk, write, and dress myself again. I spent 8 months in the hospital. I was about a week away from going home when my legs broke out in this crazy rash... That's when the WG diagnosis came. They diagnosed me from a kidney biopsy.

My first treatments were IV cytoxin, then oral cytoxin - but made my liver enzymes too high so my rheumatologist switched me to imuran and I've been on that ever since. Three days from now I'll be going I for my first Rituxan infusion.

About 2 years after being diagnosed, I was in remission up up until i had my daughter 11 months ago. This is my first flare. I've forgotten how terrible this disease makes you feel, how tired the smallest task makes you feel.

I'm looking forward to this infusion. I will definitely be posting about my experience.

Thank you all for all the information you have provided me the last couple years. I'm truly greatful.

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[Birdie]

Hello. I'm not "new" to this site.

New or not... Welcome home.

As a seasoned Wegveteran so you should be able to give plenty of advice in some areas.

[debra]

1109, hi we met earlier, as I remember you're name here, and thinking, oh man another name, I have no idea what to call... Ok, so I'm guessing you're a she! Congradulations on you're daughter! If you had to come out of remission, you picked a pretty awesome reason... You have an incredible story, wow... I wish you, luck with you're treatment, and please let us know how you do... Enjoy you're family... Deb

[mishb]

Hi dudos and welcome to the forum.

So glad you finally decided to say HI

You will have had your first infusion by now. I hope everything went to plan and you are feeling okay.

Drop by when you are feeling up to it, and let us know how things went.
Until then, rest up and let the magic work.

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

[Alysia]

Welcome to our family. You have being through hell and back. And so young. Thanks God they eventually treated you correctly.
Rtx is great. Our miracoulous med. It helped me get into remission after years of wg activity, while other meds did nothing. I still get it every 6 months. Must for me. If I late in getting it even in few weeks, wg start smoldering again. But I know also orhers who got it and dont need it anymore.
Good luck ☆☆☆

[thedudos1109]

I did receive my first infusion. It was definitely an all day event. I did have a mild reaction where my throat became sore, my chest got tight, and I became really hot - flushing. Other than that it went well.
After the infusion, and still, I'm having flank pain - more so than usual.

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[debra]

1109, hello... I think since you just had this, its to soon to know what's what? From what I've read, there are quite a few things, that can be off for a while? Another on the group, is just returning to normalish, after receiving rtx... Is normalish a word? Well, it is now... Enjoy you're daughter, and try to relax, and I hope the flank pain subsides... I'm sure it will! Debra...