Introducing myself w/a little background and then some
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.
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 didnít want to do it. But when the doctor did it, I didnít 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.
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.
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.
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.