Need help coming off the Prednisone

[Mntallyblonde]

The doctor has me coming down off the prednisone 5mg every week, but this week had been really bad. I was only at 40mg to start with and now I’m at 30mg. Today I blood in my stool and I've been cramping all week. Is there something I can do so the pain will go away? I called my doctor and left a message but no call back yet. I'm not hungry again and I'm getting scared.

 

[Karen]

Mntallyblonde ... YES I'd wait to talk with your DOCTOR about what and how you should go about weeing yourself off of the PILLS. My husband was on it and I am very thankful that he is off of it ... it was one :devil: :devil: of a drug on him & I was really scared having him around while he was on it so that PILL is long gone from our house !! :thumleft:

 

[Donna]

Mntallyblonde...

As what Karen said, yep, it is an awful medicine, but without it, alot of Crohn's sufferers would be in deep trouble. Odds are, since you are bleeding again, you might be put back up to your 40mg dose...BUT DON'T DO THAT YOURSELF without first talking to the doc. Don't fret. And as hungry as you are at the moment (trust me, after gaining 100 pounds on this med! I know about the hunger!!) try to eat smaller portions, and try and make them as healthy as you can.

Most of all, wait for the doc to call back. And don't panic.

Donna

 

[kc0eks]

I am coming off the pred now too...so im right along with ya. Been on 60 for about a month, started 50 yesterday. Will be doing that for 2 weeks, then 40 for 2 weeks...then slower. I am scared to come off of it as well, since pain wise I have been doin better, and fear it will come right back.
Just stick in there and keep us updated!

 

[Mntallyblonde]

My doctor called me back yesterday and told me to go back up to 40mg. He thinks that maybe we just tried to come off of it to fast. He said that he would call on tuesday to see how I am doing. Thanks for all your help everyone.

 

[DannyB]

I hope you get sorted with the pred soon mntallyblonde, maybe come down 2.5mg at a time is better for you. I can only manage that amount and it has its probs aswell.

All the best

Danny

 

[Kate]

hey i was the same i took ages to come of pred but i have finaly gotten off now its took me 18months but im sure you wont be that bad

best of luck
kate

 

[mikeyarmo]

As everyone has said just be patient and take things slowly. Just do not rush it and decrease very slowly and at what pace is most comfortable with you. Do not rush anything, and make sure you that you are feeling good when you try and decrease the amount you are taking.

 

[Mickeyg]

I would also try coming down at 2.5mg and you might tolerate it better. I am also being reduced from 40mg by 6mg at a time and I am on my last week. Hopefully you aren't as bad as me at 40 - no sleeping b/c your mind wouldn't rest and eating everything in site! I have a major love/hate relationship with this drug, makes me feel great but hate the side-effects.

Good luck and have patience with pred. you'll get there.

Mick

 

[mikeplatt8]

Pred

I need help getting off prednisone!!! stuck at 30mg can get lower, maybe i should decrease by 1mg.

 

[cookey]

Mike what does your doctor say about this? Whatever you do...don't try to taper yourself down on your own...or just stop taking it. Prednisone is a drug that you have to gradually taper off as I'm sure you know. It most definetly is an awful drug, but it certainly does help in controlling the Disease. Well for some anyways. Hang in there, I'm sure they will get you down to a proper dose soon.

I need help getting off prednisone!!! stuck at 30mg can get lower, maybe i should decrease by 1mg.

 

[Donna]

Prednisone is one really weird drug. Without it we would all be in worse shape, yet the dang drug makes us feel like crap...literally. For those coming off of it for the first time, don't be surprised that you start to get amazingly terrible joint and muscle pain. I did, and when I talked to the doc about it, he said that when we are on such large doses for so long, our bodies quit making something similiar to prednisone, called cortisone. When our bodies quit making it, joint pain and muscle pain become worse. So they made me stay on 5 mg for a bit until my body began producing on its own. And NEVER just quit taking it. One of the patients who I see when I get my Remicade treatments got fed up with it. She quit it on the spot while still taking 20mg. She had a major heart attack within days and they said it was due to stopping it cold turkey. And another patient had major setbacks when he went off of it cold turkey. So just be careful, listen to your body and talk to the doc and discuss the best way for you to come off of it.

Good luck guys!
Donna

 

[Kate]

pred is a love hate thing you love it caue it makes you feel good yet ya hate it for its side affects

 

[Valentina]

ditto with Danny for me, I couldnt handle coming down as fast as the DR wanted, and kept having to go back up.. the slower the better for me. only way I managed to ever get off the awful stuff.

 

[ladyB]

Kate has the idea.
It is so very hard to come off of because of the side effects it has on your body as your tapering down.
just go with your gut (pun intended) on when to taper, and your doc.