It's 3am and I am AWAKE

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christineDC
Posts: 15
Joined: Sun Apr 25, 2004 3:13 pm
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It's 3am and I am AWAKE

Post by christineDC »

I know it's the prednisone - currently at 20mg to be reduced this week thank the good lord.

Any tips on getting some sleep? I manage to fall asleep on schedule but I only stay sleeping for a couple of hours then I am wide awake for a few hours before falling asleep again.

I manage to get a lot done although people do find it odd when they see the times on my emails.

thanks.
JMan
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Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

Not really any tips.. it gets better as the doses go down and things settle.. I got the most horrendous sleep inturruptions and nightmares after my transplant.. the docs were very blase about it and did nothing really. It only began to get better once things settled a bit..
What else are you on? MMF (Cellcept) is known to cause problems with sleeping..

Re emails.. I doubt most people notice at all ;)
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
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johnsor
Posts: 69
Joined: Fri Apr 23, 2004 4:03 pm
Location: Northern ILLINOIS

Post by johnsor »

Not sleeping seems to go with the "territory" after transplantation. The good news is you are only on 20mg where as it used to be you went home at 120mg and finally got weaned down to 5-10. Not only couldn't you sleep, but I could not remember anything. I can't tell you how many things I lossed because I suspect I threw them away and couldn't remember what I did with them.

You might want to ask your doc about Ambien (Zolpidem). Actually I would tell him you need it it to get to sleep. I believe it comes in two doses...10 mg and 20mg. I would ask for the higher doseage and split in half if it works too well.

PS Counting sheep does not work well when you are in the "Predni-Zone".
gary in bc
Posts: 93
Joined: Wed Apr 28, 2004 2:40 am
Location: Campbell River, British Columbia, Canada

Post by gary in bc »

Hey Christine
Jman's right. Predisone is the world's worst best drug. On high doses I was a raving lunitic. Terrible nightmares, and parinoia. As you lower your dose, it gets better and goes away. The only way to survive is sleep when you can get it. You may end up with catnaps every few hours to maintain your strength and sanity

Gary in bc
Doolally
Posts: 379
Joined: Fri Oct 01, 2004 5:20 pm
Location: UK

Post by Doolally »

Christine, you speak from my own heart! I started taking 20mg pred. last week and I've been sleeping with earplugs in and my husband chucked out onto the sofa in a desparate attempt to stay asleep, but nothing seems to be working. Actually last night I think I only woke up ten times instead of twenty after going to my dance class in the evening - so I'd recommend dancing!!

I can't tell you all how much less insane I feel hearing everyone else's experiences of prednisone! I was on 60mg three years ago, I don't know how I coped then. Actually I don't think I did cope. My doctors were also rather blase and I had no idea until now that the symptoms I was experiencing were side effects of the pred. (& MMF). You all make me feel so much better.

And the thing about being forgetful, I KNOW!!! My husband laughs at me because I'll ask the same thing three times in an hour!! Yesterday I left the oven on all day. And I keep losing all sense of realism too - suddenly my world falls apart around me! Luckily these phases come and go so when I'm feeling fine I have my little mantra to repeat: "You are normal, you are happy, you are sane, you are in control"!!!!! Hee hee!

I love this chat group, you're all becoming my life-line to sanity!! THANK THE LORD FOR THE LOT OF YOU!

Ali
Anne in Va
Posts: 246
Joined: Fri Apr 23, 2004 11:28 am
Location: Virginia

Post by Anne in Va »

Prograf can also be a culprit in sleep problems. It affects your nervous system and can leave you feeling "switched on" or "wired." Remember we take the second dose of Prograf in the evening and it reaches peak just when we should be snoozing happily!

Some people have found that low or lowered levels of magnesium can cause sleep problems. A supplement of magnesium can help those with this problem. Ask your doctor to check your blood level. Prograf is usually the culprit in this situation, especially in the early days after transplant.

Anne
Pam
Posts: 866
Joined: Sat Apr 24, 2004 8:13 pm
Location: Springfield, Illinois, USA

Post by Pam »

Hi Christine!
I can't remember if I had problems after tx, but I did have a LOT of mood swings and crying jags, anger for no apparent reason, etc. The docs don't know what Pred does to you! :roll: :cry: I wish that they could experience what we do for one week! I bet they would say, "I can't handle this! How do they do it?" :wink:
I have had problems with mood swings and depression for 27 years with minimal relief and I am only on 6 mgs of pred every day. Recently, they found out that I have hyperparathyroidism and they said THAT might be a problem so they put me on Vitamin D therapy and Calcitriol-no luck. :x I was taking Dilantin for a seizure disorder and they changed it to another drug because my neph said that Dilantin can have an effect on the parathyroid and its components. Also, the drug I am now taking for seizures is proven to be an antidepressant...(Dilantin can make you MORE depressed! :x )
For the first time in a long time, I am having more good moods and less depression! :D I keep asking myself WHY they didn't find all this out sooner, but I am glad that they finally did. :roll:
It is a wonder that more of us are not hospitalized for drug interactions and side effects. :roll: :?
Take care,
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
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Robin in Hungary
Posts: 8
Joined: Fri Apr 23, 2004 6:29 pm

wide awake at 3:00 am

Post by Robin in Hungary »

How timely. Of course I knew it was the pred, but still it's nice to have the reassurance and know that others are going through it, too. I'm on 90 mg a day now, so no wonder.

I get up to go to the bathroom - if I'm lucky I stumble back to bed and continue sleeping. Or...the brain turns on, double-time!! To tell the truth, I'm glad my husband's away for a couple of weeks - I don't have to worry about turning on the light and radio and getting something useful done for a few hours.

The days when I have to keep going all day without downtime/naptime are tough though...and my bedtime is about 9:00 to allow time for chunks of non-sleeping time.

I can't remember at what dosage it stopped keeping me awake last time...probably I never noticed, like with so many other side effects that just faded away.

Fortunately I don't seem to be especially prone to large mood swings on pred - I get more irritable, maybe.

Robin
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Oh the wonders of pred

Post by nycpetit »

How I remember, like yesterday. It was a tough year and a half with no sleep whatsoever. Very very tough. And when the dose came down, I was asleep all the time. :wink: Sometimes however, I now wish I could stay awake more often. I want to go to bed at a normal time, and i don't tend to wake up anymore. So I'm not getting as much done as I did on pred!

Hey there's a drug we could peddle to make some money. LOL
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