so tired, so very tired

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Veteran Member

Date Joined Apr 2006
Total Posts : 3402
   Posted 1/15/2008 9:49 AM (GMT -6)   
All I want to do is sleep.  End of story.  That's all I have the energy for.  I have to force myself to get out of bed, to get ready for work, at least I'm sitting while I drive to work.  Then my concentration is poor all day at work.
I sleep.  In bed by 9:30 at night.  Up around 5:30 - 6:00 in the AM.  Weekends I sleep whenever my body feels the need - or I try to do this.
My dreams are weird and give me more anxiety than my daily life right now.  I know we've discussed Imuran causing the dreams.  Now I wonder if the Imuran isn't disturbing my sleep patterns so that I remember the dreams more than I normally would.
I'm about ready to grab a Coke just so I'm not falling asleep in front of my work station.
In the process of getting set up with a new PCP.  Will definitely mention this when I see him - but it will be weeks...
I know that I should exercise and that might help - but there is hardly energy to function let alone exert myself.  Although yesterday afternoon when I was about falling asleep, I did got to the stairwell and take four flights down and then back up.  I was hoping to be reinvigorated.  Nope.
sigh...  thanks for reading my vent.
Pan-colitis and GERD diagnosed May 2003
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
Co-Mod for the UC forum
Keep HealingWell running smoothly:

Veteran Member

Date Joined Apr 2006
Total Posts : 733
   Posted 1/15/2008 10:29 AM (GMT -6)   
I've heard that Effexor XR can cause wild dreams and keep you up, are you sure it's not that?
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm

Veteran Member

Date Joined May 2007
Total Posts : 528
   Posted 1/15/2008 11:44 AM (GMT -6)   
I sometimes had crazy dreams on pred, but not on Imuran, so I am a bit hesitant to think the dreams are from imuran. but, certainly the fatigue could be. how is your health otherwise. are you flaring? if so, the fatigue could be from flaring.
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.

Elite Member

Date Joined May 2003
Total Posts : 31004
   Posted 1/15/2008 12:12 PM (GMT -6)   
Yes, Effexor XR can increase the vividness and intensity of dreams.

Dakota...are you eating enough and getting proper nutrition? Has your doc checked your B12 levels?

*Heather*Status: mini flare Dec 28... increased enemas to nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....bromelain 1 - 2x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Veteran Member

Date Joined Nov 2005
Total Posts : 2045
   Posted 1/15/2008 1:16 PM (GMT -6)   
I know the medicine i am on at the minute is causing the carziest dreams i have ever had. They are so vivid, strange and really twisted. I found this link for you and you can see that a fair percentage of patients had mad dreams. I've been having them for about a month, sometimes they are so real it scares me.
Well hope you get some restful sleep soon.
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/propranalol


Veteran Member

Date Joined Nov 2005
Total Posts : 675
   Posted 1/15/2008 3:50 PM (GMT -6)   
I experienced extreme fatigue when I was on 6MP (Mercaptopurine), which is similar to Imuran. I also experienced weird dreams that I remembered. Although I am off of the 6MP, have quit work, sleep better and go to the gym almost every day, Fatigue is still my main complaint. I hope that you can figure out what is causing this and get some relief. It is so hard to feel so fatigued that you can hardly put one foot in front of the other all day long.
pancolitis. Osteopenia. multi-vitamin, calcium, omeprazole, benefiber, boniva, align.  Remicade since Dec. 2005.
"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"

Regular Member

Date Joined Jan 2008
Total Posts : 60
   Posted 1/15/2008 6:24 PM (GMT -6)   
When my teenager was on Imuran, they were TERRIBLY fatigued.  I had a very active teen until then.  No other meds at that time after the pred taper.  Layed around for months, missed a lot of school.  Finally they checked the levels, and they were way below therapeutic--like half of the lowest range--so the thinking was that it was the disease that was causing the fatigue, and they increased the Imuran from 100-150mg/day in attempt to get it in therapeutic range.  Went from semi-functioning, to scary weak, and couldn't even get out of bed for 2 weeks.  The whole time on imuran, couldn't concentrate--a 4.0 student.  Went off Imuran completely, and in about 3 days was REMARKABLY better.  The GI didn't believe it could be the medication, but we now know it was.  No more imuran for us!  I can't attest to the dream thing, though.  Maybe you could try stopping the medication for a few days--they ususally did that for my child with a virus anyway.  They said you could stop for a week to 10 days with no problem, but you may want to check with your GI. 

Old Hat
Veteran Member

Date Joined Feb 2007
Total Posts : 5191
   Posted 1/16/2008 1:06 AM (GMT 0)   
Sorry to read that you're plagued by fatigue, dakotagirl. It has happened to me, too, many times--though I have been able so far to manage my UC w/o immunomodulators. Plus I know a male Crohnie who has been on Imuran/Pentasa combo for over 10 yrs & he has a good energy level. So-- with all the individual variations in drug reactions among UCers, it would likely be best for you to rule out any vitamin/mineral deficiencies that bloods can show, then consider your meds as Quincy recommends. I switched vitamins a few months back-- to a combo that has more D but less A than the brand I used to take, & my energy level improved after a few weeks! When I mentioned that to my gastro at last office visit, gastro commented that the latter formula is a good one. Maybe Forvia lacks something you need. Hope you'll feel some pep returning before long-- it's really a gift when it happens. / Old Hat (nearly 30 yrs with left-sided UC ...[etc.])

Regular Member

Date Joined Oct 2007
Total Posts : 320
   Posted 1/15/2008 7:10 PM (GMT -6)   
dakotagirl - take a read about the side effects of the Effexor XR. Fatigue, insomnia and vivid dreams are in there.

I am also going to very strongly suggest that you get a set of bloods done asap to check your iron levels (anemia is common with UC) and another one to check to ensure the Imuran is being handled by your body. Many people can't take Imuran/6-MP as their body does not catalyse it properly and it just makes them sick.

Finally, how long ago did you stop the Prenisone? If its within the past 6 weeks, then extreme tiredness, physical weakness (as in new born kitten weakness) are common side effects after long term use - I can vouch for this as I have only just come off pred after 19 months and am still getting over the overwhelming tiredness and weakness.
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage
    - 2xColazide, twice a day; 1x6-mp twice a day; 1xAbatacept 10mg/kg per month;
    - 1xZinc per day, 2xScoop of Sustagen Sport per day;
    - 1xBIOCeuticals UltraBiotic 45 per day, 1xBIOCeuticals SB FlorActiv per day;
    - 1xHeaped teaspoon of Metamucil smooth orange powder 3 times a day.

Mamas Boys
Veteran Member

Date Joined Oct 2005
Total Posts : 1460
   Posted 1/15/2008 7:13 PM (GMT -6)   
I'm right there with you!  I'm always tired.  I take my Azathioprine at night - so I guess I'm not as tired as I would be otherwise.  I've basically just come to the conclusion that this is the new me!  Some days it's so bad I just want to crawl back into bed.  Most days I can squeak by until the kids go to sleep - then it's pj time for me too and I'm usually sound asleep by 9:30 - just like you.  I also find that I don't sleep well at night - wake up and see the clock numerous times - fall back asleep right away - but it's not the same as sleeping straight.  I think it's all from the azathioprine.  Everytime I mention it to the GI he kinda shrugs his shoulders - as if to say - that's the side effects there's not much he can do.  I've learned to live with it - and a late afternoon coffee (decaf of course) does wonders to get me through supper/homework/bedtime!!  :)


Veteran Member

Date Joined Sep 2007
Total Posts : 955
   Posted 1/15/2008 7:42 PM (GMT -6)   
i was the same. there was a point where i didnt really get out of bed for 3 months or so.
in my case i was aneamic. i have never taken imuran so it wasnt that. follow advice above and get blood checked.

and... it could be the whole mix of things together causing this for you rather than just one thing.
steph - 31 - female - diagnosed UC in 2000
it was all over the place in my colon... but not anymore!
last month and a half has been fabulous with no UC symptoms at all (after a year long painfully horrible flare) 
weaned off everything now i can't sleep  =(
but i love remission woohoo!

Veteran Member

Date Joined May 2006
Total Posts : 619
   Posted 1/15/2008 7:59 PM (GMT -6)   
I was like that a couple of months ago, had a blood test for vitamin deficiencies, thyroid, etc ... it was a pretty extensive blood test, they took three vials ... turned out that I had anemia pretty bad. I had a series of five iron injections over five weeks and it did the trick with the fatigue. You should ask for a thorough blood test to try to dig out what can be going on.

I am also steroid dependent only the Imuran made me extremely ill so I still need to try another way to get off the Pred., but while I was Imuran I felt like total crap -- are you sure you're not having a reaction to it?

Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97;
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, was almost off, back to 40 mg; 12/1/07 - 12/29/07 weekly Venofer (iron sucrose) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran( 2/07)

Veteran Member

Date Joined Jan 2006
Total Posts : 730
   Posted 1/15/2008 9:38 PM (GMT -6)   
Hey Dawn,

Imuran definitely caused bizarre dreams for me, as well as major fatigue, body aches and fuzzy headed-ness. I'll email you about this privately, but I really wonder if you could benefit from some sort of detox. I was suffering from many of the same symptoms as you for a long time and they didn't get better until I did the yeast elimination diet and some other internal cleansing. Sounds weird, but it worked for me.

Diagnosed Ulcerative Pancolitis
25mg Imuran

Fish Oil
Vitamin C
Slippery Elm

Veteran Member

Date Joined Sep 2005
Total Posts : 5163
   Posted 1/15/2008 10:13 PM (GMT -6)   
Are you flaring or were you recently in a flare?

What time of day do you take the imuran? I find that if I take it at bedtime I have more energy throughout the day.

Recently my blood work came back and my liver tests were elevated from the 6-mp (hopefully) and I stopped taking the 6-mp for 4 days; during that time I had so much more energy. Tonight is my first night back on the 6-mp.... I'm sure I will be "dragging a**" tomorrow. I'm a different person when I am off the 6-mp.

I really think that you should address this with your GI and PCP.... my GI said that some people do better on 6-mp than Imuran and vice versa. I am hoping that my fatigue problems are solved if I have surgery.

DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 

Veteran Member

Date Joined Apr 2006
Total Posts : 3402
   Posted 1/16/2008 9:31 AM (GMT -6)   
Thanks for all of the comments. I didn't think about it being the Effexor, but will investigate the links and that option.

I recently had blood work done. No anemia. I have been anemic in the past and know that fatigue. To me it seems different... Well, maybe... I haven't thought about it recently. I remember the anemia being even worse than what I'm feeling. Then I didn't even have the energy to get ready for work in the morning without laying down. At least right now I can do that (should probably be happy for that). It's just now by 9:00 am I'm ready for a nap. Then the afternoons are dreadful!

I take my Imuran just before bed.

My last dose of prednisone was in February 2007. (Almost a year without pred - yahoo!)

Not flaring.

I know that my diet is lacking in fruits and veges - and I am working on remedying that. I'm keeping apples on my desk at work, celery in the fridge at home...
Pan-colitis and GERD diagnosed May 2003
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
Co-Mod for the UC forum
Keep HealingWell running smoothly:

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