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coming off steroids - having hard time

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Posted 5/3/2008 12:23 AM (GMT 0)
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

Posted 5/3/2008 12:32 AM (GMT 0)
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
Posted 5/3/2008 1:05 AM (GMT 0)
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
Posted 5/3/2008 1:09 AM (GMT 0)
I think we have all been there at one time or another....You have my sympathy!!
Posted 5/3/2008 1:48 AM (GMT 0)
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.
Posted 5/3/2008 2:13 AM (GMT 0)
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! 

Posted 5/3/2008 4:54 PM (GMT 0)
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.
Posted 5/3/2008 5:53 PM (GMT 0)
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!
Posted 5/3/2008 6:35 PM (GMT 0)
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!
Posted 5/3/2008 6:42 PM (GMT 0)
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!
Posted 5/3/2008 7:35 PM (GMT 0)
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.
Posted 5/3/2008 10:19 PM (GMT 0)
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.
Posted 5/3/2008 10:34 PM (GMT 0)
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. :)
Posted 5/4/2008 12:37 AM (GMT 0)
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
Posted 5/4/2008 12:43 AM (GMT 0)

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

Posted 5/4/2008 2:46 AM (GMT 0)
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
Posted 5/4/2008 12:31 PM (GMT 0)
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.
Posted 5/5/2008 4:02 PM (GMT 0)
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!
Posted 5/5/2008 6:29 PM (GMT 0)
 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!

Posted 5/5/2008 6:45 PM (GMT 0)
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!
Posted 5/5/2008 11:16 PM (GMT 0)
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.
Posted 5/5/2008 11:37 PM (GMT 0)
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.
Posted 5/6/2008 1:28 AM (GMT 0)

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

Posted 5/6/2008 3:37 AM (GMT 0)
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!
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