View Full Version : I'm new! and here is my story..

07-11-2006, 06:36 PM
Hello, I've just been looking around sites to possibly help with dealing and accepting my Lupus, this site seems to be great!
I've just been diagnoased with Lupus which, is really really scary. I'm only 17 and I guess it just worries me. Although I have heard 12 year olds getting it which is really scary. If's in my nervous system so, i don't know if that's as worse as what i've heard about with other organs or not but it sucks. I've had probably 3 big seizers with which I had to go to the hospital 3 different times because they didn't know what was wrong.
Anyway, I have to go through Chemo.
Anyone who has any advice? Or any Comments? Anything?

07-11-2006, 09:20 PM
I am 34 and am frustrated at feeling like an old man, so I can't imagine having lupus at 17. Hopefully the chemo will work for you and you will find releif for many years. I am not familiar with nervous system lupus, but it must be serious if it calls for chemo. Hang in there and make sure you have a good support network.
Take care,

07-12-2006, 08:44 AM
Hi Coley-oley. Well I'm one of those who have lived with lupus since I was 11 years old. I'm now 27. I too have been on (cytoxan) chemo (twice) for my lupus nephritis (kidney disease). The first time I had it was from age 12 to age 17. And then I just recently had it this year from Feburary-April. The chemo isn't too bad. It's one of the milder chemotherapys as for side effects. The first time I went through it I had no problems until the the treatments closer to the end around age 17. But I had been on it for years and was getting more nausea/hairloss from it. But this past time I did rather well with just some nauea the following day which was more of "why did I eat that??" :roll: . I never threw up from it through. I also became tired from it for a few days. And then my hair loss was minimal this last session. The first round of chemo that I had years ago I ended up loosing a bit more hair (didn't loose it all, but it really thinned out- I got a wig). My hair was really straight when I was little and when it came back in it got a darker brown, curly and thicker. Not too curly, but enough that I now straighten my hair everyday or it will wave up and get frizzy. :roll: One thing that you do need to be aware of is that the chemo can cause infertility. I know that may not be something you are thinking about right now but it may affect you years down the road. I am not saying this to discourage you from getting the chemo but it is a side effect. I am a total supporter of chemo because for me it made a world of difference. But I think you deserve to be aware of the side effects of chemo. Ask them if there is anything that they can give you to help protect your fertility. I think there is an injection into the muslce which can help protect your fertility. I can't think of the name right now, but ask your doctor about it. Well I wish you luck as you start chemo. Let us know if we can help you out any more :lol: :lol: