Hello everyone, I am new here!!!

July 6, 2004

My name is Mandy and I am 34 years old and have been diagnosed with

Lupus for 14 years. I also have fibro. I am a stay at home mom to 3

1/2 year old twins. Right now I am in my worst flare that I have

ever have. I have been on so many different drugs, right now I am

on Celcept 3000mg a day and it is not working.

The next thing we are trying is putting me in a research study on a

new lupus drug. It is in it's 2nd phase to become approved by the

fda. It is calls Lympho-stat B.

I was hoping maybe someone here has been in the study or is going

through the study. If you have please talk to me about how you

are. I am a little worried sense it is so new, but the next step is

chemo, and I would like to make that my last resort. I know you all

can understand that.

I hope to get to know you all and offer some support as I know you

can offer some to me.

Thanks Mandy

July 6, 2004

HI

Im also new to the group but have already found it to be a great

source of support. I am sorry to hear that you are feeling so bad. I

am also on CellCept - curious though because a standard dose is

usually either a total of 1,000 - 3,000 mg a day. I take 1,000 in the

morning and 1,000 at night (not sure that its helping though). Anyway

I know what you mean about the chemo meds...its very scary. I have

heard of lymphostat B - i think I actually read about hte trial. I

used to work in med redearch so I have a pretty favorable opinion of

research but I know it can be scary to alot of people. Keep in mind

though that a drug can not get to the human stage of testing until

its safety and efficacy have been somewhat proven in an animal model.

Plus you will be supervised by a doctor - probably more closely than

you are now which can be an added benefit.

Well good luck with everything and welcome to the group.

meg

July 6, 2004