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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Addicted to Prednisone?


10-28-2010, 01:28 PM   #1
tpd320
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Addicted to Prednisone?

Had a recent CT scan, which the doc said was the cleanest that I have had. Just had the good ole colonoscopy yesterday and the same result. Clean as a whistle.

But, I just took my last dose of prednisone on Monday. My track record is to have a mild flare, take prednisone for a month, feel great the month after, then back on prednisone again because of a flare. Doc thinks my body is addicted to it. So she prescribed some kind of antidepressent, make u sleep better, med. Starts with an "A" (my wife took the prescription to have it filled and I am not even going to attempt to spell it) But anyway, has anybody ever been told they are "addicted" to prednisone? Doc says this new med should help prevent a so called relapse I guess.

I must admit, I never feel better than when I am on prednisone. I don"t have any mood swings or sleepless nights. I feel great on it. I do know however that it is probably breaking my bones down and doing other damage...
10-28-2010, 01:44 PM   #2
Astra
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Hiya tpd

I'm coming off Pred now after on and off for nearly 10 months! Hoping I'm gonna beat this, and not have to go back on it again, and I do feel better on it, but I also think I've been helped these last few months with a med called Amitriptyline, is this the med?
It's brill, it keeps me calm, helps me to sleep, and most importantly, I have no joint pains or headaches, which I was crippled with, I'm loving my Amitriptyline!
good luck!
xx
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10-28-2010, 02:03 PM   #3
Mountaingem
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I haven't been told I was addicted to pred, but my doctor attributes that kind of roller coaster up-and-down to the nerves in the digestive tract being hypersensitive. A side effect of some anti-depressants is that it will de-sensitize (is that a word?) the bowel.

During my last colonoscopy my doc said my bowel began cramping when he introduced air and liquid, and said that the pain I was having was from my colon being too sensitive; I had no active Crohn's. He gave me Nortriptyline and it has really helped;also works great to help me sleep and just calm down in general.
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10-28-2010, 03:20 PM   #4
tpd320
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Thats the med astra. Gonna pop my first one tomorrow night. Doc says it is gonna knock me out.
10-28-2010, 03:30 PM   #5
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tpd,

How much amitriptyline are you Rx'd? Can't remember my dosage off-hand but it doesn't have that kind of 'knock out' effect on me at all.
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10-28-2010, 03:37 PM   #6
tpd320
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I read up on it and it said it was an antidepressent. But, I finally found where it can be useful for IBS. At first thought my wife and doc were conspiring against me, secretly putting my on a mood altering drug. My wife is always telling me to get on prozac or something cuz I worry too much. Haha...
10-28-2010, 04:10 PM   #7
Astra
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Hiya Jeanette

Your med is like mine, a tricyclic, and it has analgesic effects by blocking out sodium channels and nerves, and pain receptors.
Apparantly nortriptyline has fewer side effects than amiltriptyline, the worse one is increased appetite! Oh no, I need this like a boil on the arse! Eating for 6 peeps on Pred as it is!
hope you're well?

Babs, I'm on 25mg, but started on 10mg, which didn't work, so he upped it up, 25mg really works for me! It's really calmed my bowels down as well as me head!
hope you're doin ok?
xxx

and good luck tpd! You're gonna love amitrip! Happy trippin!
Sweet dreams tomorrow night, let me know how it goes!
xxx
10-28-2010, 04:17 PM   #8
Cat-a-Tonic
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I'm also on Amitriptyline (welcome to the club! ). I was put on it because I was having daily chronic headaches as a side effect of Entocort. Amitriptyline, in addition to calming the bowels and aiding sleep, also helps alleviate headaches. It's been working really well to combat my Entocort headaches. I'm on 25 mg which I take every night before bed. Good luck, TPD - pleasant dreams!
10-28-2010, 04:21 PM   #9
Mountaingem
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@Astra-I'm much better thanks for asking! I haven't really noticed increased appetite, but I get grizzly bear hungry on pred. I eat extra amounts of protein and high fiber (as much as I can tolerate) and that seems to ward off the hunger. But in all honesty I'm such a chunk now from 9 months of pred it's hard to say what the culprit is lol!
10-28-2010, 09:09 PM   #10
tpd320
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I think my dose is 50mg a day. I sure hope it doesn't increase my appetite. Prednisone did a number on me weight wise. Went from 160 to 200. Was my sickest at 160 though.
10-28-2010, 09:24 PM   #11
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I was on Imiprimine for a short while - it's a cousin to all those tricyclics you mention. It was FAB! My shrink put me on it to help me thru a business trip last spring.

Actually, it was so fab, I think I am going to talk to my GI about going back on it again!

Good luck getting off the Pred, aka The Evil Bastard!

- Amy
10-29-2010, 01:27 PM   #12
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I've been told I'm steroid dependent, and I go through the meanest withdrawal as soon as my dose of pred gets to about 20mg. Violent shakes, depression, pain everywhere, and then finally a grand finale flare up. They are looking to start me on Remicade after this next course of pred.
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10-29-2010, 01:28 PM   #13
Astra
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ha ha @ Jeanette! I'm a chunk too!

Hey Cat, Shall I start an Amitriptyline Club Thread?

Hope you're ok Amy? Yes get back on the med, join our club!! lol
xxx
10-29-2010, 02:15 PM   #14
Mountaingem
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I've been told I'm steroid dependent, and I go through the meanest withdrawal as soon as my dose of pred gets to about 20mg. Violent shakes, depression, pain everywhere, and then finally a grand finale flare up. They are looking to start me on Remicade after this next course of pred.
Aw, Shannon, I'm so sorry you're suffering! Don't be scared to try Remicade, my doc says it's no where near as evil as pred, and it gave me my life back. Sending big hugs!
10-29-2010, 02:20 PM   #15
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Thank you! <3
10-29-2010, 04:52 PM   #16
goofyrn2
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I have been on steroids for years without a break. Finally they have decided to taper them. My adrenal glands are "asleep" so you have to go slowly. I failed several times on the steriods because they would wean them too fast. I have had the greatest success going to an endocrinologist who goes very slowly. Some weeks I can only come down a half a millagram and stay on that a week or more. Now that I have Addison's with all the steroid treatment I have to go slow until my adrenal glands decide to awaken. I guess what I am trying to say is don't come off steriods too fast or you will have a rebound. Good luck I wish I could offer more.
10-29-2010, 11:14 PM   #17
tpd320
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Well, Im about to pop my first Amitriptyline... See if I drift off into never never land.
10-29-2010, 11:20 PM   #18
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Sweet dreams!
10-30-2010, 02:03 AM   #19
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I had the same problem last year with prednisone. I would have a flare up and my G.I. would start me with 40 or 60 mg and taper me down by 10 mg every 10 days. My flare up would go away every time after about 3 to 4 days, but by the time I got to 10 mg the flare would come back. I could still be stable at 20 mg after the initial higher doses got it under control, but could never get past 10.

I finally had to have another small bowel resec., but just letting you know you aren't alone. Best of luck to you.
10-30-2010, 07:47 AM   #20
goofyrn2
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Thank you r cronier. This new doc I am seeing just for prednisone tapering believes when you get to a point you feel symptoms as you taper you stop, wait , and start tapering as little sometimes as a half a milligram. For me, so far, it has helped. It may take me a year to get off this stuff but its nice to know there is someone else with the same frustration. Happy Halloween.
10-30-2010, 07:50 AM   #21
goofyrn2
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I think you will find it takes a while for the Amitriptyline to work. The first time the doctor gave me the script it takes a couple hours to work so take it according to your intended bedtime. Some folks get up tired or lazy feeling just so you are aware. Happy Halloween
10-30-2010, 04:29 PM   #22
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My GI infuriates me sometimes with how quick she wants the taper. Dropping 10mg every 5 days! Ugh, last round I flared up something awful, so I'm sure with this even quicker taper I'm looking at another week of hell coming up. She's worried about me on the Pred longterm because of joint necrosis, since I am showing some signs. But still! Give me remission! Give me relief! :P
10-30-2010, 05:04 PM   #23
vonfunk
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I'm pred dependent.
We've tried to take me off a couple of times, but the taper was always slow. It went 5mg a week until I got to 20MG, and then 2.5mg until I hit my maintaining dose.
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10-30-2010, 10:27 PM   #24
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I'm possibly pred dependent too, we got down to 3.5mg but had a flare and ended up on 25mg for a couple of days Ignoring hydrocort, I've averaged about 20mg pred since being diagnosed mid 2005.

Despite our best efforts to get off it I only got down below 10mg last year, so dependency wouldn't be too surprising, but we're still hopeful.

I'm down to 9mg now, we'll keep dropping by 1mg/month until 6 or 7mg when it'll change to ½mg/month until 4mg where I'll probably be staying at least a few months.
10-30-2010, 11:01 PM   #25
tpd320
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Well I am off of it as of this week. We will see how long I last this time. Just started Remicade a couple of months ago so maybe that will help also.
10-31-2010, 12:16 AM   #26
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I noticed a massive improvement with my first dose of Remicade, I was in a massive flare and the single dose jump started the healing. In theory you should be able to ditch the pred if you're on remi, failing that you should be able to lower your maintaining dose.
10-31-2010, 10:32 AM   #27
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I think your doc used the wrong word. As others say your body is currently dependent on Prednisone. Scaring and upsetting it sounds like unnecessarily.
My right eye is the same. It feels like it's having uveitis even when it's not now, so now I am tapering over several months, and might need a maintaining dose. From what I understand it's common with medical steroids which is why part of why doctors don't like to give over long time times. Your body will get over it (till you have your next flare). Don't worry.
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