I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: renalpenguin on April 21, 2010, 08:02:51 AM
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Hey everyone!
I'm so excited- my cousin is going to be my donor June 22! :yahoo; :yahoo; :yahoo;
I have almost no worries about the transplant- except one. PREDNISONE!!! I've been on prednisone since Sep 2007 to try to prevent my kidneys from failing (obviously it didn't do a good job at that!) I've been on anywhere from 5 to 50 mg a day and I HATE it! Eventually, I'll get down to a 7.5 maintenance dose at about nine months post-transplant. My question is what are the side effects at that dose (7.5 mg)? Yeah I've taken the drug for two and a half years now, but a lot of times we couldn't tell what was a side effect and what was the disease (for example, I never got a prednisone moonface- my whole head was swollen with water; nothing like the prednisone "chipmunk cheeks" pictures I've seen on the Internet). I'm so excited about the transplant I won't mind any side effects- I just like to know what they are so there are no surprises!
Thank you so much!
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I can't answer your question, but I just wanted to swing by and say congratulations! I'm so excited for you. Gosh, several people have shared this same piece of good news today; it's so wonderful!
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Great news about the transplant. Living donors are truly great.
I've been on prednisone since 1985, higher doses at times but mostly on a maintenance dose of 5 mg a day. I had chipmunk cheeks and prednisone can affect the bones long term so it's important to have bone density tests done (I go yearly and take actonel). I think it (pred) made me look a bit funny, not like my usual face but honestly I didn't care. I think I was more "pretty" before but I was sick as a dog and had zero energy so I really preferred myself afterwards. I also took cyclosporine which grew peach fuzz all over me and I had to shave every day...meh, I still do and no one knows unless I tell them. Being bionic and carrying other people's body parts around isn't a cakewalk but it beats the alternatives for me. All of us, including people without kidney disease just have to take care of ourselves as best we can and like our bodies for their function. However we must treat them right and respect what they need nutritionally to best serve us . I feel very sad when I see so many people in our culture abusing their healthy bodies with bad food. I had to work very hard to NOT gain weight, prednisone and cardio workouts make me ravenous, that's the hardest but I've managed it by having strict rules for myself about food. I love the taste of all foods but refuse to put crap that's bad for me into my body. No deep fried stuff, only whole grains, not much red meat, lots of salmon and fish, lots of veggies, stir fries at home, brown rice instead of white, fruits not too high in sugar, no white flour or white breads etc. May sound tough but I am convinced that the average north american diet is awful for us. When I "treat" myself it has to be healthy too. Avoid processed foods and packaged junk. I never drink soda because it can really take a toll on the bones, especially colas. Since my first transplant at 31 (I'm now 56) I've gained 12-15 pounds instead of the 50 or more that is not uncommon with transplantation. We tend to gain weight as we age also and I would have chosen to eat the way I do with or without ESRD. Exercise is key in maintaining a steady weight and I try to do it every day.
Good luck renalpenguin and let us know how everything goes.
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If you are so concerned about the side effects of prednisone, there are transplant centers that can do transplant prednisone-free. So, there are choices out there. Best wishes for your transplant.
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It has all been said. I just warn to come off it very very slowly. If you have been on it for any length of time you need to drop very slowly. Prednisone withdrawl sucks.
I was on 10mg for 17 years with my transplant. I came off way too fast. I've read (now) that 1mg a month for long term users.
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I'm down to 1 mg of Prednisone and I will be off 100% come May. At about 10 mg most of my physical changes slowed down or stopped. Like the constant hunger, moon face, etc. Your side effects at 7.5 should be minimal to none, but I agree with Monrein. Try to keep that eating under control so you are dealing with it later like I am. I'm still trying to lose the weight. I was fortunate, and unfortunate, enough to transplant just before the Holidays, so I was trapped at home, starving, during Thanksgiving and Christmas in 2008. I was not good and I'm paying for it now.
Congratulations on your transplant! :clap;
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I'm on 10 mg, and still fighting the appetite and the weight gain. I don't know if I got moon face at higher doses or not - I had complications that made me retain soooooo much fluid that I'm not sure if the moon face would have shown up or not. I don't have it now, though. The hair thing is very weird. Most of mine has thinned right out. It doesn't grow any where near as fast as it used to. This is not all bad. I used to have to shave my legs almost daily - now it's weekly. Waiting for a bad hair cut to grow out is excruciating, though. I had a few mood swings at higher doses - mostly noticing weeping at mushy things that never would have made me cry before. I didn't get the bitchiness that some people notice. (My sister swears this is true - and she would tell me if I had.)
At any rate, I'd take prednisone side effects over D any day.
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the OSU transplant center which is my center only gives it to you when in the hospital, but they take you off of it as soon as you leave.
Troy
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Thanks everyone for your responses! Even with prednisone looming in the future, I can't wait until June! :)
My biggest concern (as conceded as it is) is the moonface. I'm not worried about weight gain- I'll be careful, but throughout this whole time I've lost weight; even when I was on 50 mg/prednisone a day I had to fight with myself to eat at all (my body never seems to act like everyone's is supposed to!)
My transplant hospital I'm at (Baptist Health in Little Rock, AR) uses a mostly steroid-sparring regimen which gets you off as soon as you're discharged. The only exceptions are people who've been off prednisone for less than a year prior to transplant (me) and patients with FSGS (me again). So I'm not a candidate for no prednisone (and all the other hospitals in the area use prednisone for everyone, FSGS or not). I am, however, going to fight for every-other-day thearpy; don't know if they do that or not but it's worth a try; I'd rather be on 15 every other day than 7.5 daily!
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Yeah, my moonface was ugly. I had the moonface until I dropped to about 10 mg. My skin was beautiful, though. lol No wrinkles! It was like having a botched botox. :)
Keep yourself healthy between now and June! I'm so excited for you!!!! :yahoo;
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Dont let prednisone and the "moonface " to scare you any,main thing is NO MORE DIALYSIS! My tx clinic just reduced mine from 10mg to 7.5 just last week @ 2yr post tx check-up will be on it until..... Just march on and deal with the side effects as they come.Look forward to a "normal" as can be life ahead...I know june 22nd cant get here quick enough. congrats on your gift! God Bless!! Chris :2thumbsup;
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lol yeah. To be honest I couldnt give a @)@#*)@@ about "moonface" if it means I am away from that machine, can eat and DRINK more normally and all that stuff. I can live looking like Stewie Griffin.... it's better than being tied to the vampire by a long shot! I say BRING IT ON!!!
(though yeah, if we had a steroid free protocol I'd absolutely love that)
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So you guys totally reassured me everything would be great and that I could deal with 7.5 mg prednisone... then my transplant coordinator called. Good news, bad news- the bad news is I apparently "misunderstood her" and that the maintenance dose is really 10 mg (I think she really just made a mistake, but whatever) :rant;
The good news is that "under certain circumstances" (although I haven't been told what those are but it sounds like if all goes well) I might be able to get on an every-other-day regimen of only 12.5 mg! To me every other day would take away side effects a lot of the side effects (I've been on 100 every other day before with only a little insomnia and mild acne but nothing else). So the prospect of 10 mg "forever" (or a long time at least) is driving me crazy but at least I have hope of 12.5 mg every other day. ;D
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They told me my maintenance dose would be 10 mg, too. I'm 8 months out, and the doc just surprised me at my last appointment by lowering it to 7.5 for a month, with a possibility of dropping to 5 if all my labs are good at the end of the month. Don't assume the transplant coordinator knows how the docs are going to deal with individual patients!
Besides, if your center is like mine, once you have the transplant, you never see the coordinator ever again.... ;D
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Absolutely guys! :2thumbsup; Moonface be damned! :clap; It's only for a short time.
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I've been on a 5mg maintenance dose for about the last 15 years of my first transplant and after about three months of this current one. Seems fine.