Introducing myself w/a little background and then some

Runnette26 · Not So Newbie Joined: 26 Aug 2005 Posts: 9

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.

devotedmom · Sea Monkey Joined: 24 Aug 2005 Posts: 10

Welcome, Runnette. I was diagnosed with SLE when I was 19 years old but my lupus fared up 3 months after I had my first son I was 27 years old then. I was in strong doses of medications, a blood transfusion for my anemia & I had to have a kidney biopsy. I was so scared at first that I didn’t want to do it. But when the doctor did it, I didn’t feel a thing just a quick, couple of pocks & he was done. The lupus did flare up my kidney & that is when I went through chemotherapy (cytoxan) for about 6 months. That was the worst than the biopsy. The effects of the chemotherapy the next day was nauseas, vomiting & no energy at all.

Hope everything goes well with your liver biopsy let us know who it feels. Stay strong & welcome again.

Runnette26 · Not So Newbie Joined: 26 Aug 2005 Posts: 9

Thank you for your reply devotedmom. So, you say you didn't feel a thing? It didn't hurt? How did you feel afterwards? How are you doing now? Your reply made me feel a bit more at ease. I have yet to schedule my biopsy, but I intend to do it this month. I am guessing I will have it done in October. I will keep you posted. Thanks again for your reply.

hippimom2 · Kitten Joined: 15 Jul 2005 Posts: 143 Location: Iowa

Hi Runnette and welcome. I'm glad you found us. I'm sorry that you have lupus and that it is changing your life in so many ways. I used to be a long distance runner too. When I first got sick, I cut way back on mileage, but still tried to keep running. I can't run a t all anymore, but still have hopes to get back to it someday. I hope you can continue your runnning. I've had problems with my liver too, but nothing that has needed treatment yet. It looks like you were diagnosed around the same time I was. I'm still trying to come to terms with it and deal with all the things that have changed in my life.

You'll find lots of great people here. Take care.

dandoon_88 · Goldfish Joined: 13 Aug 2005 Posts: 64 Location: Kuwait

hi runette i wish u all the very best!
i was diagnosed a year ago with lupus nephritis and have had 2 kidney biopsies done so far; one in 2000 and the 2nd one last summer.
It isn't that painful, it only takes a few seconds so don't worry!!
You get to spend the day at hospital since it will be difficult to get out of bed and i got lots of blood in my urine but that's normal after the biopsy.