coming off steroids - having hard time

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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/2/2008 5:23 PM (GMT -7)   
Hi all...  I guess I should be glad (and I am) that I am coming off the steroids.  But, it's so hard on me emotionally and physically.  I am so dependent.  I take methylprednisolone and I went from 8mg to 4mg a week and a half ago.  As typical, the initial transition was fine.  It was a few days later that it all hits.
 
For me that means horrid mood swings, depression, exhaustion...  oh and an acne-like rash on my face.  The rash I can handle but the moods are so hard.  I feel like I am on the verge of tears everytime I turn around.  Then my b-day is Monday and I am so sad not to be well on my 40th...  I don't even want to celebrate!
 
Basically I feel pathetic.  I mean, I should be happy!  I am not doing great, but I am only on 4mg.  I want more out of Tysabri, but at least I am not throwing up and I am showing signs of improvement!  I don't know how I can go to alternating 4mg/0mg days.  Maybe I will need to transition to 2mg.
 
Sorry for the ramble.  I just honestly don't feel like anyone but other Crohnies would understand.  I hate Crohns!!!!
 
Thanks for reading ...
 
-- pathetic Shari
--39 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


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/2/2008 5:32 PM (GMT -7)   
It sounds like the taper might have been too fast. What about three two one rather than dropping to two. Go slower it will save your sanity. (of cource with the advice and consent of a physician).
Sj

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 5/2/2008 6:05 PM (GMT -7)   
Try going up to 6 mg for a week or two. When I finally got off pred, I came to a point where I had to split pills..
You can do it, just hang in there, OK?

Sincerely,
Matthew

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 5/2/2008 6:09 PM (GMT -7)   
I think we have all been there at one time or another....You have my sympathy!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/2/2008 6:48 PM (GMT -7)   
Thanks guys, really. I really didn't think it was too fast, but I guess I am not functioning properly. It helps so very much to know others understand. I know it will pass but it sure makes it easier to have people in my court cheering me on! It's such an odd thing, these steroids. They are poison, but they are often the only thing that helps. When I am on them I cannot wait to get off. But, getting off is so hard.

I just hope that I can stay off for longer than 2 months!!!! But I want my hair to grow and my face back to normal. If a girl could ask anything else for her b-day, I don't know what!!! ;-)

Thanks again for the shoulders. You guys are great.
--39 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


Cookie's Wife
Regular Member


Date Joined Aug 2005
Total Posts : 299
   Posted 5/2/2008 7:13 PM (GMT -7)   
I don't think I could have said it better myself!  I HATE prednisone and I HATE getting off of it.  I SO get where your coming from!  Hang in there! 

April
 
If God brings you to it, He will bring you through it


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/3/2008 9:54 AM (GMT -7)   
I have been tapering for about a year, so I get where you are coming from. I still have about 4mg to go. I did have to go back up a week ago for a very short burst, so I have a short set back. But, I have been doing 1mg every 2 months, just because anything more and I can't take the side effects. I want off badly, but I want off for good, so I'm willing to do it REALLY slowly. You may need to just take time.
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.....


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/3/2008 10:53 AM (GMT -7)   
Shari,

It might help to know that the lower your steroid dose, the slower you need to taper. In other words, if you were on an extremely high dose, you would taper faster and then slow it down as you drop. The last 5mg are the hardest, because your adrenal glands need to start doing their job again (the adrenals normal make cortizone and if the adrenals go on vacation while your on steroids, they need to re-engage). I think our body normal makes about 7mg/day . . . so that's why you are having a hard time right now.

I hope you feel better soon.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/3/2008 11:35 AM (GMT -7)   
It's good to know why the lowest doses are the hardest. Thanks for that info about the amount our adrenal glands are supposed to make. I sent out my b-day invite and I called myself the "adrenally-challenged Shari"... Indeed. I will have to go slowly or I will end up alienating myself from the rest of the community! Oh, but I woke with a cold today, too. I am sure that did not help with my mood swings yesterday! Just exhausting.

You guys help so much!
--39 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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/3/2008 11:42 AM (GMT -7)   
Shari,

Its always easier for me to "do the right thing" when I understand how this stuff works. Most doctors can't spend the time they should to help us understand how these meds work. But I really wish they would hand out printed information on things like this. Actually, many doctors don't realize how slowly some of us need to taper. Its a very individual thing. I hope it goes well for you.

I haven't had to take long term pred. . . so far, I've only needed to take the medral dose packs . . . but I've been posting on the Lupus forum for years and many there deal with this all the time. Some actually find that they need a maintenance dose of pred at 5mg/day to keep things stable.

Have a great birthday Sheri!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/3/2008 12:35 PM (GMT -7)   
Does anyone know if the side effects like bone loss and hair loss are less damaging at a low dose like the 4mg range? It seems like my hair loss has slowed with the lower dose, but I wonder about bone health due to continued steroid use.
--39 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


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 5/3/2008 3:19 PM (GMT -7)   
I am coming off it too. I am down to 5mg. I puked yesterday & was so sick. Today mostly just tired. Tuesday I will be prednisone free!! :) I hope I can make it.
Live for today, for tomorrow you might just get hit by a semi.


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/3/2008 3:34 PM (GMT -7)   
I hate to be the bearer of bad news, but prednisone is a really bad drug. I was on it for 2 years and was recently told that I shouldn't have been on it for longer than a 6 week period. I was diagnosed with Osteopenia 4 years ago do to the steroid use and am quite peeved that they didn't inform me of the effects of long term use of Prednisone. And the bad part of this is that I am on it right now because it's the only thing, plus 6mp, that I can use while breastfeeding. Which is a double whammy on my bones right now. I should be taking a calcium supplement, but not sure how much to take. Waiting on a doctors appointment to find out that. The pains I get in my bones are excrutiating. They feel like growing pains and I know I'm not growing anymore :). So use with caution. Doctors are way to ready to prescribe this drug because they think it really works and all us Crhonnies Know that it works REALLY well when we first start it because we are in so much pain that its nice to have a break from the pain, but once ou start weening off of it, it feels like your 2 steps farther back than when you started. Good luck with the weening off. I'm in the same boat. :)

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/3/2008 5:37 PM (GMT -7)   
Hi Shari I was on pred. for over a year my bone density test was good I had a few months back,I did get put on calcium and vit.- D because I was on it so long. I got off the pred. about 3 and a half weeks ago it took me a long time to get off it. I see you have a 10 year old my teen was glad I finally got off the pred. I am having loads of body pain at times not bad but enough to slow me down. Hope you have a great B-Day and best wishes with your weaning. lol gail

indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 5/3/2008 5:43 PM (GMT -7)   

Hi Shari,

I just got off prednisone a week or two ago and it was hard!!!  I started out at 60, then 40, then 20 and I swear, when I got down to 10 and went lower it was very, very hard.  I had depression, anxiety, mood swings...I would cry at anything and everything!  It was hard to get up and go to work.  I also had acne as well that kicked in towards the end of using it.  My patience level, especially with drivers, was at about zero.  I also got really bad headaches the last week or two I was on it.

The week I actually stopped taking it was a relief!  I started to feel like myself again. 

Hang in there and know we are all here for you! 

Take care!

Indigo

 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 5/3/2008 7:46 PM (GMT -7)   
Last 5mg? It was the last 2.5 for me, actually. I can do ( and have done several) high dose tapers for things like severe IBD arthritis attacks in the past.

Matthew

jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 5/4/2008 5:31 AM (GMT -7)   
I saw a dermatologist shortly after tapering off of Pred. they all seem sooooooooooo surprised that one would break-out when getting OFF of the steroids. but i had the same withdrawl-type symtoms of everyone else. i had a couple of days which were just throw-aways... all i wanted to do was sleep or die or a bit of both. i've been off of the pred for 3+ weeks now and some days i feel like i need it. but i am trying to be strong b/c having been on it for 8 years i really need to force myself to stay off of it.

CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 5/5/2008 9:02 AM (GMT -7)   
Shari, I totally feel your pain. The horrific mood swings and terrible depression are so nasty. I get them anytime I'm over 20 mg/day of pred. Luckily right now I'm right at 20mg. The really nasty part is that no matter how much you try to talk yourself out of it, you can't.

Just remember, you're not alone!
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.


styxgurl
Regular Member


Date Joined Jan 2008
Total Posts : 67
   Posted 5/5/2008 11:29 AM (GMT -7)   
 I understand....I have been on 60mg, then 50mg for two weeks and taping every two weeks by 10mgs. I have been on 20 now for 4 days and have started having a racing heart, sweats and shakes. I am not sure if this is normal or not, if anyone knows please tell me. I hate the way I feel right now!

 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/5/2008 11:45 AM (GMT -7)   
well, I am still at 4 and doing a little better I guess. I had a horrible Crohn's night/morning, but I don't think that was related to dose. I have this stupid cold too, so that makes it hard to figure it all out.

My bone density is already low, -2.2, osteopenia. I am going to do another density test soon and have my docs determine if I need a bone-building drug or not.

styxgurl -- I get a racy heartbeat too when on the higher doses. I can actually see/feel my chest cavity thump! Oh, shakes big time too. Basically steroids are poison in my mind, but a necessary evil at times. Moon face, etc.

And, I always break out when i go off the steroids, never while on them! Same with mood swings. I am stable mood wise while on a steady dose ( a little wired maybe but not moody) but when I go off... Look Out!
--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


cqdx
Regular Member


Date Joined May 2008
Total Posts : 20
   Posted 5/5/2008 4:16 PM (GMT -7)   
Coming down off pred, particularly below the 10mg/day range can be real tough. If you have only been on it for a short time (I measure that in months, since I have been on it for years), you should be able to do it in 1 mg/week or even 1mg/2week intervals. You do need to do this in consultation with either your primary care physician or your GI, though. I am currently stuck at 10/day and have been there for a very long time. Every time I get ready to start the reduction I have a flare up that requires a bounce back to a higher dosage. There is a distinct possibility that I may never get off it. & yes, I have all the nasty side effects.... good luck and take heart.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 5/5/2008 4:37 PM (GMT -7)   
I am hoping to get off it. I took my last 5mg today. I have been on it since February. I hope I don't have more problems. I was so sick last week. Don't know if it was the flu or from pred withdrawal. I had D today, but didn't eat well. I am not really supposed to have IBD now, I guess, so it can't be that. (unless the GI is wrong or goes back to her original diagnosis.) I hope the D doesn't stick around. I guess we will see what tomorrow holds. Only problem is my stomach is doing flip flops & cramping horrible. I hope tomorrow is better.
Live for today, for tomorrow you might just get hit by a semi.


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 5/5/2008 6:28 PM (GMT -7)   

sr5599- Wanted to ee how you were doing with coming off the steroids? Ive been off for almost a week after being on them for 9 months. So far all is good here. Hope all is going good with you as well

Jason


Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). Off predisone and on tysabri 4/3/2008
============================================


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/5/2008 8:37 PM (GMT -7)   
Hi Jason,

I guess I don't know. I am pretty sure I have responded to Tysabri, but maybe not significantly enough to remain on it. Today was a horrible day with temp back up to 100.4. But, I figure that means tomorrow will be better. I am just not sure how much of a response I should have had by now. I mean, this is the first fever in a couple weeks. And the night sweats are pretty much gone. Still lots of mucous and all that fun stuff. But, it's a little better. Maybe I need one more infusion before being this low on the methylpred. I've been really sick for a long time (year and a half flare now). All I know is that I was much, much, much better 3 weeks after the Prochymal versus 6 weeks after the first Tysabri infusion. I figure one more then leave the decision up to the docs. Maybe it's time to re-consider that ostomy... I only have so much fight left in me after a day like today!
--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

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