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Author Topic: How did you deal with the night effects of prednisone?  (Read 4548 times)
Deanne
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« on: March 08, 2014, 01:35:00 AM »

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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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Angiepkd
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« Reply #1 on: March 08, 2014, 04:56:24 AM »

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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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Sugarlump
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10 years on and off dialysis

« Reply #2 on: March 08, 2014, 06:28:07 AM »

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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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
jeannea
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« Reply #3 on: March 08, 2014, 10:10:04 AM »

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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obsidianom
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« Reply #4 on: March 08, 2014, 12:51:54 PM »

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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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Deanne
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« Reply #5 on: March 10, 2014, 09:31:42 PM »

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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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Sax-O-Trix
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« Reply #6 on: March 10, 2014, 10:23:22 PM »

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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Preemptive transplant recipient, living donor (brother)- March 2011
Charlie B53
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« Reply #7 on: March 16, 2014, 10:24:57 AM »

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.
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