I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Deanne on March 08, 2014, 01:35:00 AM
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I finally just caved and took an oxycodone. I know I'm taking them for unapproved uses. It's a bit from desperation while the kinks from the side effects get worked out. Once the oxycodone takes effect I think (hope) I'll be able to sleep. Prednisone is driving me mad. It's like RLS, but over my whole body. It's waves of feeling like I'm crawling out of my skin, interspersed with only my legs feeling that way. Covers on. Covers off. Sitting up. Laying down. Tightening and then trying to relax all muscles. I'd probably scream, but my parents are sleeping in the room next to me. I drop from 20 milligrams to 15 on Tuesday. I hope it makes a difference. I'm looking forward to my surgery to remove my dialysis catheter just because they'll knock me out for it.
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I feel your pain, Deanne! The prednisone is brutal. I have just 6 days left on it, and am looking forward to getting rid of it. I have been rather schitzy since transplant. I am guessing it is due to the meds. They tell me my body will adjust to them over time, and the side effects will fade. I can deal with that. Just feeling so blessed to have gotten this miracle! Good luck to you!
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Prednisolone is a bummer ... when I was on 40mg I couldn't sleep at all, I was up most of the night. My brain would race.
Then I would keep dropping off during the day but never felt refreshed. It made me very very hyper and even on reduction eventually
to 5mg, it took several months to get it out of my system. I would not worry about taking sleeping or restless leg meds for awhile.
Sleep and/or relaxation is important.
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On higher doses I would hallucinate and have night sweats and terrible nightmares. On lower doses I just have dreams of people trying to kill me a few days a week. Partly you have to just survive until your dose goes down. I recommend when it gets bad just get up. Turn on the light and do something. Read, knit, whatever you like. Eventually when your eyes droop it will hopefully be easier to sleep.
Hang in there. The lower doses are coming.
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Prednisone has very variable and interesting effects on people. I prescibe it often but try to get patients off it as quickly as possible. It is interesting to see the different reactions to it. It has a more variable range of effects than most meds. This may be because it is basically a naturally ocurring hormone. It is really just cortisol/cortisone at higher strength. I have many patients who love it and feel so much better and positive on it and hate going off it. Others are miserable and gain weight quickly and have trouble sleeping or are irritable all the time. It proves to me each time I see the effects just how different each person is . That is partly why medicine is an art rather than a science. Each patient has to be worked with differently and monitered when on meds. There is no "one size fits all' in medicine. Often as a doctor I find experience is the best teacher due to the variability in patient responses.
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I knew prednisone would cause me a lot of grief. I tried at first find a steroid-free transplant center. I was on it in the past and the side effects were devastating. Tomorrow my dose is reduced to 15 mg. I'm thankful I've been able to stay off insulin this time and that I'm able to walk a bit, although slowly and not very far. Last time my blood sugar hit 1500 and I was on the edge of needing a wheelchair due to muscle wasting.
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For me, being on the maintenance 5mg seems to be alright. Twice early in my transplant I was dx with acute rejection through biopsies (that sucked). The "cure" was extremely high doses of I.V. Prednisone every day for several days and then gradually lowering the dose with oral prednisone. I was taking 80mg tablets at one point and was very highly agitated the entire time. 60-40-30-20-10-5mgs over a six month period. Hell, pure and simple. I can only imagine what damage has been done to my bones... I had to give myself 10 seconds to respond to questions half of the time because I was very short tempered.
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No tx yet.
Before I started PD the Dr put me on Prednisone.
I gained 40 lbs within the week. I didn't have knees or ankles any longer, went straight from my thighs to my toes. And my toes loooked like big marshmellows.
This pushed my resting heart rate from 60 to 92. He didn't tell me but I bet there was substantial water in the heart sack.
Dr stopped the P and quadrupled my furosimide.
Peed it all off over the next two weeks.
Made the appt to have my PD cath put in.