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Crohn's Disease Forum » Treatment » Time spent on Pred?


05-24-2006, 10:30 AM   #1
DarrylP_Ajax
 
Time spent on Pred?

I just wanted to get a feel for how long people have been on drugs like Pred. I have read throughout the net stories of some people being on Pred for only a month or so before beginning tapering off and have read about others who have been on it for years...i am only onto Day 10 of Pred @ 80mg/day and am just trying to get an idea of how long the average stay on the drug is....i am wanting to get off of it as soon as possbile as i have yet to experience many side effects and dont really want to go down that road
05-24-2006, 11:20 AM   #2
Valentina
 
I was on it for over 6 months.. I stopped counting. It was awful, I kept going down, and then having to go right back up to 9 pills a day, and it never did a thing to help me.. I just kept coming off too fast for me.. Im better to do things as slow as I can. lol
hope you can get off it quick, and dont have to go through any of the side effects that come along. good luck!
05-24-2006, 05:26 PM   #3
Kate
 
i started at 40mg and was on it for 18 months
05-24-2006, 07:10 PM   #4
Mickeyg
 
I have been of and on it so many times over the years I couldn't tell you the longest but it was probably when I was pregant with my 3rd and I started it right in the beginning and was off probably 3-4 months after I had him. It seems everytime there is a special event, graduation, wedding etc... I have the dreaded moon face.

This last time I went on at 40/mg per day and the first thing both my husband and good friend said was "Great now you will get a fat face!" I could have killed them both but I have been tapered quickly and will be off this weekend!! Yippee!!
05-24-2006, 07:43 PM   #5
Donna
 
I was on it for over a year, starting at 100 mg after I got home from the hospital. Every time they tapered, I started having problems again. All in all, since Jan. 2004 till now, there have only been 5 months I wasn't on Pred. And, since this last bit, my face is only now beginning to get back to where it was. I also had alllllll sorts of bad side effects, but it has saved my life on more than one occasion, so I can't really knock it. I don't know what they will do next time I need it cuz it made me diabetic while I was on it, realllly bad. Since I am off of it now, the diabetes disappeared. And they didn't like how high my sugar was going (and I wasn't even eating!).

And taper as your doc tells you to. If you stop the drug altogether, you run the risk of falling over dead, seriously. So listen to your doc on that!!

Good luck!
Donna
05-24-2006, 11:25 PM   #6
Sparrow
 
been on it for over a year now and seems like my doc keeps stalling whenever i ask if hes gonna get me off it soon..down to 15mgs a day
05-28-2006, 02:54 PM   #7
bugzy
 
nearly 3 years, fluctuating from 20mg to 70mg.
05-28-2006, 03:06 PM   #8
mikeyarmo
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I was on it for about 6 months. The dosage varied from 40mg to 5mg. I stayed at 40mg and 10 mg for the longest periods of time, and other dosages were during periods of weening off.
05-28-2006, 03:18 PM   #9
DannyB
 
I have been on pred since I was diagnosed with crohns about 18 years ago now. I have a varied amount depending on how my crohns is doing but it is always under 10mg/per day so according to the docs, this dosage has no risk to bone damage.
09-12-2006, 01:25 PM   #10
chadta
 
I was on it for 3 months, started at 40 mg, went down 5mg a week and have been off it for almost a whole week now.

Yeah i know the math dosent work out, i was in the hospital at 25 mg the first time and got moved back up to 40 and had to work my way down all over again.
09-12-2006, 07:47 PM   #11
GNC Crohn's Man
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Their are several factors too take into acount when looking at prednsione..

1) Your overall health atm (mentally, and physicaly)
2) Your Age
3) Your Weight
4) Sex? (Dunno never been a female so I dunno) But I do know birth conrtol medcine will affect your prednsionse wither they say so or not.... (rant below)
5) Severity of inflamation in your intestines
6) Have you been on prednsione before
7) What is the longest amount of time you have ever been on prednsione
8) Are you on any medications or herbal supplements that will hinder your ability to take prednsione?
9) Do you smoke or drink as these can affect prednsione and your overall health.... FYI smoking aggratvates crohn's.... Alchol is hit or miss but smoking triggers cron's flares...
10) Do you have any other health problems?
11) Also what is the highest dosage you have ever had to be on of prednsione. And for what lenght of time was that?

All of these things should be looked at when they determine your prednsione dosage taper.... If they do not look at these things ask them too. If they laugh at them then fire them and find a new set of doctors...


Rant time.....


Skip this part if you want.... But it does link in with the fourth factor so you may want to read.

Very few things are known about crohn's dieasease but you do know some things. Abrupt changes in the bodies hormones (puberity) generally triggers must IBD cases.... Others are triggered at later date mid 20's.... Seems all the stories of the mid 20's people were mainly women though... Some were guys most were women... No the pill... What does it do? It changes aburtly your bodies hormones... We still don't know alll the long term side effects of messessing with your bodies natural hormonies are... But 9/10 their bad... So ANYTHING that can directly affect your homonies stay away from... Yes this even means sinius meds because they affect hisitmine which can then affect other hormones... For men don't take testerone boosters (legal or illlegeal) same for women (except they call them (sex pills)) So what does that all mean?!??! ThatI like to rant.....
09-12-2006, 07:49 PM   #12
pinkylee
 
I have been on it for over 30 years. Started with major doses and then down to about 25mg every day. I have been lucky. No moon face but very thin skin with red bloches and bruise terribly. Have now gotten diabetic nerve damage and several other side effects. However at that time I was told I would develope many things. But to have a quality of life it is worth these things.
09-12-2006, 07:53 PM   #13
GNC Crohn's Man
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Also if you ever keep having reaccuring flares (ever 1 month to 2 months) get them to run as many ct scans as possible.... Your prednisnone or lack of it may be causing these problems... But as always with this medcine get off of it as safely and as quickly as possible... But remember safely first not quickly...

YOU CAN NOT STAY ON THIS DRUG LONG TERM.... If you do you will die... And not from crohn's...

Treat your prednisone like you would an attack dog... It can save your life in certain sistutions and be yoru only hope, but then again one day it can turn and bite your throat out.... So always treat it with respect...
09-14-2006, 03:21 AM   #14
andilynn09
 
I have been on prednisone for about 3 months now, after 2-3 months of entocort not being a strong enough steroid. I am currently down to 5mg/day, but have had some trouble at this low of a dose. My doctor told me if I am unable to be off the pred by the next time I see her, she will be taking me off it shortly and adding remicade to the pentasa and imuran i already am taking. She does not want me on steroids much longer due to the probs they can cause if you take them for too long, and figures that if they haven't put me in remission yet then something else needs to be added to the meds routine. As GNC said, you should not stay on any steroid long term...they aren't meant for long term usage, because even at low doses they can be harmful to your body.

Follow what your GI says about your doses, and generally he or she will try to get you off the pred as soon as possible. Some of the side effects can be pretty crappy, but usually it's a decent trade-off for the relief it can bring to your crohns symptoms. Good luck.
09-14-2006, 02:38 PM   #15
Kev
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I've got a presciption for it on the fridge, given to me by my GI just before she went on maternity leave... just in case I started to seriously decline again (so far, so good).. I know that our overall gameplan is for me to start using it when my current situation stabilizes.. and the regimen is a two month ramp-up, then a month of full on dosage, then a 2 month slow taper (hopefully till I'm off it all)..
From our discussions, this is the typical gameplan for administering prednisone.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
09-18-2006, 05:39 PM   #16
Skinsfan1229
 
Everyone HAS to understand prednisone has TOTALLY differenty side effects on everyone. I've been taking it for 15 years or more first for asthma, then for crohns in higher doses....after 15 years a DEXA scan finally came back saying osteopenia.

I dont think its fair to some to just say NO i wont try prednisone, when it could get you out of a flare, and you coudl come right off...there is so much bad hype about it these days, why not try entecort(budesinide) its the same thing, but less side effects specifically on the bones I beleive.
09-19-2006, 11:23 PM   #17
DarrylP_Ajax
 
Skinsfan1229 said:
Everyone HAS to understand prednisone has TOTALLY differenty side effects on everyone. I've been taking it for 15 years or more first for asthma, then for crohns in higher doses....after 15 years a DEXA scan finally came back saying osteopenia.

I dont think its fair to some to just say NO i wont try prednisone, when it could get you out of a flare, and you coudl come right off...there is so much bad hype about it these days, why not try entecort(budesinide) its the same thing, but less side effects specifically on the bones I beleive.
I have now been off of Prednisone since Aug 30th now, i had one three day bought with some diahrea last week but other then that i have been on a consistant (not trying to give too much detail) 1 solid BM a day since i came off of it. I am having a little troubles at the gym with all the muscle i lost through the ordeal, but its probably just as much my mental outlook on my body image as much as my actual physical loss. I am playing the waiting game until it strikes back.
10-04-2006, 07:29 PM   #18
huskyjerk
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GNC I agree with what you posted. I have been on prednisone several times. I have a very bad reaction with it. It turns me into a raging maniac. Its not safe for me to be around people when i am on it. The last few flare ups i refused to take it. I will never take i again unless i am hospitalized and under supervision.
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