09-02-2005, 01:15 PM
Hi y'all. I was diagnosed with SLE in May of '04. That was added to my already full plate. In 1996 I was diagnosed with ITP - Idiopathic Thrombocytopenia Pupura - it has to do w/my platelets and means that I am a bleeder. They don't know why, hence, the Idiopathic. When they diagnosed me I had 8000 platelets. They put me on high doses of prednisone and I gained weight, but it worked. That was when I began working out to control my weight. A year passed and I had a splenectomy (removal of my spleen). I was great for a year. I had energy and it felt good to be normal. Then, a relapse. They didn't know why. Doctors ordered more blood work, which at this point was nothing and I didn't mind the needles. I was said to have Lupus anticoagulant, but not Lupus. Okay. We did Prednisone again and I started running.... a lot. I completed 5 marathons. During this time, my platelets were great! I felt great! Then, I started feeling tired again and waking up at 5 AM to run wasn't as easy. My joints started hurting, in my hands especially. My ankles became very swollen. My legs broke out into a rash, which has left the lower half of my legs scarred with brown spots. One bump got infected and was not biopsied. I was referred to a rheumatologist and diagnosed with Lupus. I even got a second opinion just to be sure. It was confirmed. I also have Raynaud's syndrome - my nails turn blue and white when I am cold. Since then, I don't run hardly ever b/c after 3 miles my joints are aching. I still workout 4 - 5 times a week, but I'm not as strong and flexible as before. My husband now opens my cans of coke for me. I still can't make a full fist and now a liver biopsy is being asked of me. My live enzymes- AST and ALT- have been in the 140's since Jan. and it is not b/c of the hydroxychloroquine, which is what is being used to treat my Lupus in conjunction w/10 mg.s of prednisone. Currently, my AST and ALT fall in the 170's range. I have yet to schedule my biopsy b/c I'm scared. Really scared. I keep thinking, "I'm only 27. I should be getting pregnant." I remember what the bone marrow biopsy felt like and I don't particularly care to remember what this type of biopsy would feel like. Has anyone out there had a liver biopsy? What gives? Well, this is where I'm at right now. I just pray Lupus stays away from my kidneys. I don't know how much more i can cope with. I already have a hiatal hernia (sp) b/c of Lupus, now, possibly my liver.