AHH! Steroid Insomnia - HUMOR ME!

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/23/2008 12:39 AM (GMT -7)   
I hate steroids for ALL kinds of reasons! ALL kinds! My recent severe flare has landed me a nice course of 40mg of steroids and I'm tapering by 10mg weekly, but I forgot ALL about the INSOMNIA! Even with a pain pill, am I tired? No way!

So, humor me.... what do you do during those sleepless nights? My daughter will be up at 6am which I'm guessing will be about 2 hours after I finally find a way to fall asleep. Sudoku and Nick & Nite used to be my keys, but no ambition for either right now...tho the TV is on....
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 11 months old


Bspbtwins
Regular Member


Date Joined Jan 2008
Total Posts : 27
   Posted 7/23/2008 4:32 AM (GMT -7)   
I am currently on 25mg.  and tapering.  I started this time at 40mg.  I take ambian for my sleeplessness.  It knocks me silly about 15 minutes after I take it.BUT I sleep like a baby.  The down sides (for me) to this med. : I can't remeber anything after it kicks in, and I apparently snore pretty bad when I take it.  eyes
 
SInce those are the only side effects that we have found (for me), the benefit of sleeping  for out weighs the bad.
 
One day I will right a book about my ambian stories. Or maybe my hubby could right it.  Apparently I have said and done some crazy stuff, that I don't remember.
 
 
 
GOod luck with your taper! 
 
 

Diagnosed with CD in Jan. 2008. 
Meds Currently on: Prednisone 30mg, Azathioprine, Sulfsalazene, folic Acid, and Ambian for zzzz's.
 
I choose joy... I will invite my God to be the God of circumstance. I will refuse the temptation to be cynical... the tool of the lazy thinker. I will refuse to see people as anything less than human beings, created by God. I will refuse to see any problem as anything less than an opportunity to see God. ~Max Lucado
                          


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 7/23/2008 4:32 AM (GMT -7)   
Might not appeal to you but on the nights I find I can't get to sleep I try deep beathing then stretch my toes,legs,body,arms even face and more often than not fall into a nice peaceful sleep, give it a go I hope it helps :-)

survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 7/23/2008 4:43 AM (GMT -7)   
i am wishing that you would have posted a little while earlier- i just got 3 hours of sleep from MY steroid insomnia.
i have used trazodone- non- narcotic, works ok, but not great.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/23/2008 6:14 AM (GMT -7)   
Are you taking the PRED first thing (as early in the morning as you can)? I was always told to take it as early in morning as possible to avoid some of the sleep disturbances. It usually worked when I did it that way. If not, I think you might need to contact your doc about something to help you sleep.

Another thing I wanted to point out, going down 10 mg is a little fast. You might want to talk to your doc about that. I have always reduced by 5 mg a week and never had in problems weaning down when I did it that way.

Good Luck!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 7/23/2008 9:20 AM (GMT -7)   
Lunesta helps quite a bit. I have insomnia even when I'm not taking pred, but of course the pred makes it much worse. I tried Ambien before the Lunesta, and it did work, but I'd feel much more fatigued in the a.m. Lunesta doesn't work as well as Ambien, and it also tends to leave a metallic taste in your mouth. It's a small price to pay for a good night's sleep, though.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Prednisone 20 mg/day, Pentasa 4 gm/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 7/23/2008 10:37 AM (GMT -7)   
I would take an ambian and sleep 'til 4 am, then I would watch a movie
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 7/23/2008 12:01 PM (GMT -7)   
Taking it early in the morning does help. I'm down to 8mg right now, so I don't have that problem anymore. Infact I kinda miss it, at least I had energy! Back to being zonked of energy now. :(

I also have bad allergies, so some nights I would take a benedryl for it, and that also in turn helped me sleep.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down from 10 mg again, Asacol, Questran, Toprol XL (for high blood pressure).


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 7/23/2008 2:19 PM (GMT -7)   
I know how you feel, Im currently on 100MG of pred a day for the last 3 weeks, and my docotor says hes only going to taper by 5's every other week starting in 2 weeks..haha. Forget about sleepless in Seattle its sleepless here in Pittsburgh for me. Keep your head up, hopefully it will all get better soon =)

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/23/2008 3:25 PM (GMT -7)   
I started at 40mg too but I only taper down by 5mg's. I got to 20mg's and had to go back to 30mg. But coming down
again and doing ok because I think the Methotrexate is kicking in. YAAHH!! Anyway, I take my prednisone very
early in the morning 6am so it doesnt bother my sleep.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS and Arthrities too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/23/2008 5:11 PM (GMT -7)   
Hi I used to get up in the middle of the night and go on HW for a hour or two and then go back to bed. I am very glad to see your home. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 7/23/2008 8:25 PM (GMT -7)   
Prednisone in the morning always! I also taper by 5mg per week and the last week to 2.5mg.  A warm soak in the tub and Benedryl.  I also take my Lexapro one hour before bed.  I don't have much tolerance to any drug so this knocks me out.  As always, check with your doctor or pharmacist before adding anything over the counter to the drug cocktail!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 7/23/2008 9:06 PM (GMT -7)   
As mentioned above, pred very first thing early in the am will likely aid with any sleep issues.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4096
   Posted 7/23/2008 9:15 PM (GMT -7)   
I hang out on this site, like tonight. It distracts me for awhile and then I try going back to bed.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/23/2008 11:13 PM (GMT -7)   
Yup, taking Pred at around 8am when I get up and get something on my stomach, otherwise it makes me ill. It's 1am, and uhm, yeah, round 2! I started to get tired, and then my mind started running, and well, I just cleaned the bathroom, had a snack, and cleaned up my daughter's toys. I forgot this feeling! Seriously. I remember when I was on 60mg, I slept maybe 3-4 hours a night and I cleaned the other 20 hours of the day! (Not really a joke!). I also remember reorganizing everything in our house. I just cleaned out all the dust bunnies from our furnace tonight too. Oh boy! THe OCD has set in!!! My docs have always tapered 10mg, but it's typically 10mg every 2 weeks. Since this was a quick boost of Pred to aide the Remicade to kick in (went to 10mg/kg from 5mg/kg just 2 weeks ago), they are weaning me off quickly. I mean, we'll wean slowly, but I've always weaned 10mg at a time in the past with no trouble. I simply battled a LOT of insomnia and hunger seems to get me too. I really battle most of the side effects: Eye pressure increased (I have a good opthamologist - hence they want me off as quick as possible too - I've had a retinal detachment so steroids are only in extreme situations), moon face, oily skin (really bad - I literally use an acne wash and the alcohol and my skin is still oily), weight gain is questionable but usually get a hunger increase, nausea (a reg. coke helps curb it), insomnia, hmm.. am I missing something? I don't get mood swings with them... But I'm on Lexapro too.

I might try my Lexapro in the evenings. I think what didn't help too is I switched from Bentyl to Librax because the Bentyl was making me so so so sleepy. The doc said that was a common complaint and really the Librax is a temporary thing too - 2-3 weeks just to keep my body calm.

I have some Ambien from when I delivered my girls (I REALLY didn't sleep then - I woke up every 15 minutes for 2 or 3 days thinking it was 7am and time to get up). I might try that. I'm skeptical to take pain meds and sleeping meds whenever I need to care for my daughter though. If DH didn't have to work bright and early tomorrow morning, I'd consider the Ambien to get the sleep. Luckily, I have some things I've been working on on my laptop through the night until I can wind down...

Thanks for the tips tho! Hoping I can get a few hours of shut-eye tonight! If not, tomorrow will be another long-long long day!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 11 months old


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 7/24/2008 1:24 AM (GMT -7)   
well i would bake pies and make jam. or do a lot of reading.. seriously though, i feel for ya... BTW i would always take my prednisone at night just before going to bed.. seems i sometimes could get to sleep before it hit my system and kept me up.. maybe try it?
randynoguts 



     http://www.geocities.com/randynogutsweb/


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 7/24/2008 3:04 AM (GMT -7)   
crikey, kaycie- i am still about 2 hours behind you. i have a job interview today and i feel asleep at 2 ad woke up at 430. i will probably be manic during the interview and fall asleep on the way home- clutching my 3rd breakfast of the day as i am perpetuallly starving. but the house is clean, right?

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/24/2008 1:40 PM (GMT -7)   
survivor49 said...
crikey, kaycie- i am still about 2 hours behind you. i have a job interview today and i feel asleep at 2 ad woke up at 430. i will probably be manic during the interview and fall asleep on the way home- clutching my 3rd breakfast of the day as i am perpetuallly starving. but the house is clean, right?


LOL! Yes, totally! The good news is we were amidst some minor renovations when the flare and PRED hit, so I'm getting things dusted and cleaned up in time for my daughter's birthday party! At least THAT will make me feel good! I have a bazillion things of paperwork to work on, but I'm getting antsy and having difficult concentrating again! Gotta love that too.

Randy - I'll try that with the PRED. Never thought of it that way. Not sure if it'd work, but it's worth a shot. In the hospital, I was getting IV steroids and I was getting them 4x a day at 10mg each. I responded well, but the insomnia hit about day 4 or 5, but that doesn't surprise me. Of course, the Dilaudid pain meds they gave me.. well.. that made me get some rest! ;)

Oh well! I'm just humoring myself here. Off to work on more paperwork.. only thing keeping my mind straight, I think! Then, I'm sure I'll do a 1-2 hour cleaning spree sometime tonight. Wouldn't be like me without it!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 11 months old


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/24/2008 4:31 PM (GMT -7)   
When I was on really high doses my neighbors offered to leave me their keys so I could come over and clean their houses in the middle of the night cause after a week or so, mine was DONE. Your cleaning story brought that back to me!

Its been a while, but seriously, if it continues, you do need to get some sleep. While you are sleeping is when your body is healing and repairing. So, if you are not able to sleep without some help, talk to your doctor. Ambien long term is addictive, but oh it works so good. Lunesta doesn't work as well but doesn't carry the risk of addiction. Whatever works best for you and your situation given the length of time you will be on prednisone and the time it will take you to taper. Just don't go too long without sleep. I'm sure as a new Mom you are used to lack of sleep, but seriously, talk to your doctor, please.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 7/24/2008 4:38 PM (GMT -7)   
Thanks Suzanne! I got about 5 straight hours last night and took a 2 hour nap with my daughter this morning and going to try to get an evening nap as well. I usually get about 3-4 with the PRED and about 7-8 without PRED. I'm resting at least. Just sitting on the couch resting whenever possible. (Except those mad burst of cleaning! Ugh!)
Kaycie - Age: 26
Crohn's - Dx Nov 05
Remicade - Next infusion - July 10th - new dose - 10mg/kg
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 11 months old


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 7/25/2008 2:38 PM (GMT -7)   
Hi Kaycie I slept much better from 20mgs down so hopefully you"ll soon be weaned down . Best wishes on your daughter's birthday. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail

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