withdrawal from prednisone? is it normal to feel tired and sad?

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survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 5/26/2008 2:22 PM (GMT -7)   
I just finished a slow taper off of prednisone- i had been on it for a year and a half. i cannot get out of bed, i have no appetite (which is not a bad thing because i gained so much weight on pred) and i fee so down. i know that this sounds like depression, but it started as soon as i finished the prednisone. is this normal? how long will it last? if anyone has answers, please help

Celey
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Date Joined May 2007
Total Posts : 1284
   Posted 5/26/2008 2:34 PM (GMT -7)   
:(... Sorry to hear about your depression.... *Try to be happy at least that you're off the evil prednisone, though*


I wish I could give you the answers you seek.... but I haven't been off prednisone since I was diagnosed... I may end up in the same boat you are when I finally am able to get off of it...


*Curious to see how others respond, so I can know if this is something I can expect*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 5/26/2008 2:59 PM (GMT -7)   
thanks- i am hoping that this will pass. i am truly grateful to be off of prednisone.

elroque
Regular Member


Date Joined Apr 2008
Total Posts : 38
   Posted 5/26/2008 3:05 PM (GMT -7)   
Yowzas! I am so sorry to hear that you are feeling so bad!! I have a GI appointment this week where I will hopefully finally be taken off of the prednisone (also a slow weene going on a year). I too gained a ton of weight (about 40-45 lbs) on it so I am ecstatic to hopefully be off of it. Keep us posted on how you are doing and I will let you know how it goes on my end. Have you talked to any of your doctors about how you are feeling? Best of luck and I'll keep you in my thoughts.

Rock
 
Love many, trust few, but always paddle your own canoe....


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 5/26/2008 3:29 PM (GMT -7)   
Well, prenisone does all sorts of things and so does withdrawl from pred. If the inflamation is back that would cause the fatigue-but just not having enough cortisol can do that as well. Anytime you mess with hormones you can cause changes in mood. So it could be the pred causeing depression. My advise would be to tell your doctor what you are experiencing and let him help you figure out what to do about it.
Hope you feel better soon.
Sj

gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 5/26/2008 4:45 PM (GMT -7)   
Hi Suvivor I have been off pred. for 2 months now and like you been on it for over a year. I have been having alot of body pain and a wee bit of depression but I think it is associated with the body pain and I had some eye problems. Are you having any body pain? Hope your depression goes away soon. I find it a little disappointing not to be able to do as much but see how things go I guess. lol gail

ssmith415
New Member


Date Joined May 2008
Total Posts : 5
   Posted 5/26/2008 5:13 PM (GMT -7)   
I have been on predisone for 1 1/2 years.....my GI is trying to slowly ween me off. I was having a lot of withdraw symptoms and so he put me on Azasan to help with them. It has helped me A LOT. I still haven't gain my appetite back, but I guess that's ok, concidering I went from 90lbs...to 150...................
-Sherri
Sherri-28 yrs old
Crohn's Disease-diagnosed 1/2007
5mg predisone
Lialda
Azasan
Remicade Treatments every 6 weeks
B-12 Shot every month
Multi-Vitamin


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 5/26/2008 5:26 PM (GMT -7)   
Wow so many of you were on it for so long! I think that would probably be pretty normal. Even just going down from 40 to 30 mg the last two weeks I've noticed changes in mood, aches and pains. I can imagine coming off of it completely would even be worse.
~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: tapered to 35 mg, Asacol, Questran, Toprol XL (for high blood pressure).


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/26/2008 6:02 PM (GMT -7)   
Those of you that are weaning off the prednisone... or have been off the prednisone.... and it wasn't because you were starting to feel better.... What are you taking now?
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 5/26/2008 6:14 PM (GMT -7)   
remicade and azathioprine

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/26/2008 6:29 PM (GMT -7)   
.... The azathioprine by itself doesn't help? :(... How much azathioprine are you taking?
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/26/2008 6:37 PM (GMT -7)   
Every time I taper down below the 5mg marker I get depressed, irritable and extreme fatigue. It hits about 3 days after the change in dose and lasts a little over a week. This last time I went very, very slowly and, while I still felt it, the process what easier at the end. Of course, now I am back on them, but...

Hang in there. It takes time for the adrenal glands to start functioning again, especially after so long on the steroids!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/26/2008 7:33 PM (GMT -7)   
Yes, and if it gets too hard to cope, tell your doctor. They may be able to arrange a slower wean.

I.
Co-Moderator Crohn's Forum.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 5/26/2008 8:56 PM (GMT -7)   
That's true, you may need to taper down a little slower. Shouldn't have to just suffer like that! I'd give your doc a call.
~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: tapered to 30 mg, Asacol, Questran, Toprol XL (for high blood pressure).


crohnie_boy
Regular Member


Date Joined Aug 2007
Total Posts : 29
   Posted 5/27/2008 2:58 AM (GMT -7)   
I was just put on prednisone 60mg about a week ago , 4 my CD.Usually i taper 5mg down per week, so i'll be on it 4 about 3 months. I've been on pred many times in the past so know how my body will react.Sleeplessness, emotional upheaval,its a kind of madness, not to mention physical s/effects. My heart goes out to all of you who have been on pred for so long.
 Hi I'm crohnie_boy
 33yr old boy . Diagnosed @ age 14 ileocolitis crohn's.
 Taking Pentasa 1500mg twice daily
 Try to keep smiling ,but hard sometimes


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 6/6/2014 11:08 AM (GMT -7)   
Welcome, Pender Island. This is a very old thread. Please start a new one and introduce yourself to the forum!
*******************
52 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day) generic Colazal (9 6 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (2 tsp daily), mesalamine enema as needed. Gluten free as of 5/30/11. Scope in 8/11 found no evidence of inflammation!

rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 8/28/2016 1:06 PM (GMT -7)   
Hello, I used to visit this forum but haven't been here in several years. I am being treated for spondyloarthropathy which took a very long time to diagose.. My rheumatologist believe it is due to IbD. My old gi thought I had IBD but I won't go into that becuse it would take a book to explain. He retired and the new gi I go to does not think I have IBD, he calls it IBS. No one has ever biopsied my terminal ileum for several reasons which I won
t go into now. i was treated first with Pentasa, then went on Humira due to joint symptoms. Was on that since 2009 but had to switch to Remicade because of Medicare. (remicade is considered a "Part B drug" because it is given by infusion) I haven't done as well on it. My question now is about prednisone. A few times my rheumatologist has given me prednisone in the past I've hated it. It made me crazy, couldn't sleep, elevated my blood pressure and blood sugar and those were short courses at low doses and a quick taper. . Whenever I have had a problem after that he gives me a medrol dose pack which doesn't give me these symptoms. I was on a trip out west and developed severe pain in my right hand (I wasn't driving) with numbness in the first 3 fingers like you get with carpal tunel syndrome. By the time I got to california in 7 days the left hand had thesame problem. I put up with for about 2 weeks and then called myrheumatologist. He called in a medrol dose pack and by the second day all symptoms were gone. When I finished it, symptoms were all back in 2 days. Put up with the problem for about 2 weeks and called back. Then nurse said he wanted to put me on a daily dose of prednisone. I told her how badly I have reacted to this drug in the past but I really didn't have a choice. He prescribed 10 mg and I could take 1-2 once per day depending on how I felt. Has anyone ever heard of dosing like this? I started out on 2 because I felt awful. Took 20mgdaily forabout6 weeks, then cut down to 10mg for 4 weeks, then down to 5 mg for 4 weeks. Ijust saw hm and he said to take 2.5 for 2 weeks. the surprising thing is that I didn't feel anything except relief of symptoms The only thing it did was raise my blood sugar. I felt good, completely normal. However, cutting down to 2.5 has been different.I feel awful, mainly emotional. Ihave what they call "co-morbidities" which is a herniated lumber disc so not sure how much that is affecting my mood,.

Sorry this is so long but that is the story of my life, nothing easily explained. My questions are 1) Has anyone ever heard of a prednisone dosing schedule "take 1-2 depending on how you feel?" 2) could the different type of dosing have been the reason I felt so good or was it because it was in conjunction with remicade and 3) why did it takegoing down to 2.5 before I felt so lousy? I had thelumber disc problem when I was on 10mg and probably on 20mg also. I commented that the prednisone wasn't doing much for the pain in hadfrom that (at that time I didn't know the reason for the pain, just recently diagnosed with the herniated disc) by the way, the crazy hand problem hasn't returned yet and no one has any idea what caused it.

Thank you to anyone who has read this long story
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