I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Elvis on April 10, 2011, 07:21:42 PM
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I had my TRANSPLANT on Sept 28, 2009. So, I'm about 6 months post TX. After about 1 1/2 months I had to have my Tinkhoff Cath removed from my stomach. Then in Dec. I got an infection at the exit site. Wow, it really did hurt, then was in the hospital for for about 7 days to get rid of the infection. They pumped me full of Vincamyiacin, and other things to get rid of it. After several days I noticed that my toes were cramping. I shrugged it off. went home on the 17th of Dec. I got to the point my feet were killing me. The pain was awful. The doctors (Neph) thought it was the Gout,Not. after about a week and the meds finished, I called him back and said,"it's not the gout". Back the Doc. Diagnosed me with Auesto Necrosis. My Femur, Tibial, Fibula were involed here. Blood supply to the bones was compromised. Went to the bone Doc. He gave me a shot in the knee and a brace to wear. That didn't last but a day or so. He said the Prednisone was the problem. Not more for me. It's April now and still having the pain. I need help! Anyone had anything like this to happen to them.
EDITED - MOVED TO PROPER TOPIC - RERUN, MODERATOR
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I have had my transplant 18 years come june 23. I was taking 10mg of prednisone for almost 14 years. My little toes went numb was told the same but they decided to start wheening me down. I used to get awful leg cramps too. I am now down to 5mg prednisone and 75mg clyclosporine a day. If I don't drink enough water or if I drink too much caffine I get real bad bad pains in my big toe so bad that even the sheet hurts and I can't sleep. drinks other than water really don't hydrate me enough. The big toe pain acts like gout and feels like gout but its the meds and not drinking enough water....I have cheated a little and put sweetner in ice water....if you close your eyes and take a drink you will actually think you are drinking ice tea. hope this helps
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I don't have answers, but don't feel alone. I was on high doses of prednisone about 10 years ago and the foot, knee, and ankle pain was enough to make me want to cry sometimes. That was in addition to cramping. My hands and toes would cramp up, too. It took a couple months after I was off prednisone before my ankles stopped hurting and it took several years before I regained the ability to fully bend my knees. I still feel awkward sometimes, like they don't work quite right.
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I had the same problem. I actually had damage to my knee that was so bad that I had to get a knee replacement. I'd been on prednisone since 1994. I still have joint pain in my hips, other knee and wrists. The doc wanted to do a knee replacement on the other knee, but I don't want any more surgery.
My diagnosis was avascular nucrosis, and like you, the blood supply to my knee was compromised. I don't have any answers for you. I had my dose lowered as much as possible, but I don't know if will ever be able to get off of prednisone completely.