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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Experiences with Prednisone?


03-09-2010, 01:16 AM   #1
David in Seattle
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Experiences with Prednisone?

Although I still don't have a firm diagnosis, my latest GI doc has put me on 20mg of Prednisone once a day for 2 weeks, followed buy a taper, as yet to be determined. This is after I was not able to tolerate Pentasa. I took my 1st dose today, and so far no real side effects. I did feel a bit better today, but who knows if it was the Prednisone. I would be interested to hear anyone's experiences with this drug.

TIA

David
03-09-2010, 03:00 AM   #2
bindi's mum
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hi! this is bindi.. i started out on 30mg for 2 weeks and tapered 5mg every 2 weeks. it took me a few weeks for the puffyness to kick in. i got the round face, my fingers felt swollen and my arms and shoulders got a bit swollen as well. i got down to about 10mg and i started to get cheekbones back! i was soooo excited haha. iv still got abit of puffyness happening. im down to 5mg now. from when i started the prednisone to today iv put on about 7 kilo's!! lol mum says im eating more and its not the fluid. i started on humira not long after i started prednisone so not sure which one is doing the job or a mixture but i have never been better! plus my inflammatory markers are down to normal which is awsome as well!

hope it goes well for you!!

bindi
03-09-2010, 06:12 AM   #3
Astra
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Hi David

this is my first time on Preds and I have never felt better! but it is Evil! lol
I started on 40mg for 4 weeks, then tapered down, I'm on 20mg this week, an reducing by 5mg per week til zero is reached.
Within days I was manic, wired, and an insomniac, sleeping for 3 hours a night, eating everything I could get hold of, my fingers were tingling and I had the jitters really bad, talking ten to the dozen like I was speeding (amphetamines)
Now that's all gone, just feel a bit tired, but sleeping well, and the munchies has subsided, I've got the moon face and big belly, but I have no symptoms of CD, no pain no D, and it's the best I've felt for years!
so good luck David, you'll be ok, remember it's temporary,
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03-09-2010, 07:18 AM   #4
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Hey David, not sure if this is true but I think emotionally us women on Prednisone tend to take it a bit harder. Crying, angry, insommiac, depressed, and then your body wants to go go go and your brain is in speed motion but that could be on higher doses. I am on 35mg now and taper Saturday. Just try to cut down on caffeine cause it makes it go into jittery mode . My D has stopped and now kinda need fiber to get things moving. Stiff joints are prevelent too. It does make you feel better but as you taper lower it slowly comes back, and need something to maintain your Crohn's. What does your Gi say for after?

Hang in there, drink lots of water, kinda dehydrates you too and keeps your organs clear of toxins from it.
03-09-2010, 08:04 AM   #5
Dustin
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Hi David,
It has been a while since I was on prednisone, but I thought I would tell a bit of my story. I was put on prednisone when I was 13 - started before I was diagnosed, and continued taking it long after that. At that time they only had clinical data on side effects up to 3 months of being on the drug. I was on it for 2 1/2 years straight. Every time they tried to wean me off, my Crohn's would flare up, so they would have to bump up the prednisone again. I had a lot of the side effects - puffiness, hunger, sore joints, violent mood swings - so much so that my parents were scared some days to talk to me.
Finally when I was sick of all the side effects, and I had been on Imuran (azathioprine) for about a year, I decided to stop the drug cold turkey. My doctors warned me NOT to do this, as it can cause liver damage - especially since I had been on the drug for so long - but I couldn't take being on the drug any longer. I stopped the drug cold turkey, and didn't get the flare-up I was getting when weaning off the prednisone. Thankfully I was very lucky and didn't get the liver damage either.
I have had to go on prednisone quite a few times since then, and every time I have to stop cold turkey - for some reason my body doesn't like to be weaned off it. I hope you have a much better experience of it than I had.

Good health and best of luck.
03-09-2010, 10:23 AM   #6
Nyx
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I've been on prednisone several times and usually at a much higher dose than you're on right now. I usually start at about 60mg and it takes about 4 to 6 months to get off of it. I had the insomnia, moon face, eating everything in sight, weight gain, and mania (some get depressed, I went the opposite way). I was just on prednisone last June and I'm just now getting my face back...lol But, it does calm this disease down so I figure the side effects are worth the results. Make sure you ask your doctor about getting you on some maintenence drugs before your taper is done though....otherwise your symptoms might return.

Good luck!
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03-09-2010, 01:39 PM   #7
living4today
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Hi David-I have also been on Prednisone many times. No "moon face" but definetely burst of energy and insomnia. You aren't on too high a dose so I bet you will be fine. Good Luck-

P.S. I love my doctor in Seattle-Dr. Martin L. Greene at Minor and James Medical-super smart and fixes me everytime!
03-09-2010, 02:59 PM   #8
Misty-Eyed
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lol don't ask. I was on it for 7 years because it worked a little too well. It's amazing but awful all at the same time.
03-09-2010, 03:23 PM   #9
Luthgee23
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I've also been on it several times. Side effects for me have always taken a little while to crop up - I get the "moonface" after a few weeks and start gaining weight from the absolutely ravenous appetite I develop. Overall you start feeling very good, but after a long while other lasting complications can arise. My bone density, for one, had been somewhat affected the last time I was scanned. Luckily I haven't had to go back on pred in several years and have now been on Humira for 3+ years solid. It does the trick for the most part.
03-09-2010, 09:00 PM   #10
David in Seattle
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Thanks for the replies. You know, I'd probably be less concerned if the side effects were something non-threatening, like pancreatic self immolation, rather than ending up looking like the poster child for Cushing's syndrome, Gary Coleman. Yup, rather have the ol' pancrease explode...

My symptoms are pretty uncomfortable, but not nearly as bad as what some of you brave people have to contend with. I did take 20mg yesterday, no real trouble sleeping, though I DO think I noted a mild but rather pleasant "speedy" effect (that's how they get ya... ) I've read that either taking 10mg/day, or skipping every other day, can lower side effects further, so I skipped today. Depending on how I feel, I may try 10 tomorrow, then play by, errr, gut, after that. Better to be conservative (did I say that ?!? ) in the beginning, I think, I can always increase the dose if needed.

Thanks again for the input & support, group.

David

Last edited by David in Seattle; 03-09-2010 at 09:05 PM.
03-10-2010, 02:03 AM   #11
bindi's mum
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heya! wow iv havnt had any trouble with sleeping or any burst of energy, just the moon face adn weight gain. mum thinks i have slight mood swings but then again im 22 soo who knows lol. about the missing days i understand how you dont want the symptoms, i was the same freaking out about getting fat but i think id rather have a moon face then have crohns stuff.

bindi!
03-10-2010, 06:10 AM   #12
gibby
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I'm on a course of pred at the moment for a flare and i havent needed pred for a few years so taking it bad, seeing all the side effects come back! The main one i get is the jitters, i get quite shakey hands and get that weird speedy sensation sometimes where i can feel a bit dizzy. I get joint and shin pain especially in my legs and start to lose a bit of hair but think thats only cos i am on imuran and when they are combined that can happen. I get the ravanous appetite where i may not feel hungry but i want to eat, its like my jaws just wanna work! so with that i can gain a little weight....i get the moon face and puffy tummy after a few weeks and occasionally get myself a little moustache over my top lip...very attractive!
But it works to get me out a flare quick smart and thats the aim....pretty smart drug if not for the side effects
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03-10-2010, 06:23 AM   #13
violetcreams
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I couldn't hack the stuff at all- it made me feel really freaky. Like my eyes were bulging & I was all jittery. Yuk. I had to come off it. Too bad budesonide doesn't seem to do anything at all to help.

Last edited by violetcreams; 03-10-2010 at 07:33 AM.
03-10-2010, 07:08 AM   #14
My Butt Hurts
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David in Seattle said:
I've read that either taking 10mg/day, or skipping every other day, can lower side effects further, so I skipped today. Depending on how I feel, I may try 10 tomorrow, then play by, errr, gut, after that. Better to be conservative (did I say that ?!? ) in the beginning, I think, I can always increase the dose if needed.
I personally wouldn't play around with the dosage. If they put you on pred, you must need it. I would take it as directed, that's how it will help you the most.

Also - if you are on pred for a while and skip a dose, it can mess with your adrenal gland.

20 mg does seem low to start off with. I usually start with 40 for an 8 week taper. The time I did a 16 week slow taper worked the best.
03-10-2010, 07:37 AM   #15
Rob
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Hey gibby I'd be having my blood sugar levels checked of I was you
jittery an dizziness could be because you have too low blood sugar levels - pred can cause this

I've been on an off pred for years usually 50-60mg a day then taper etc I've been on my latest dose for 6months but with a stint of hydrocortisone while in hospital (if you thought pred was bad for moon face an water retension an ravenous apetite etc then think again lol hydro is bad! - does wonders but as it's stronger so are the side effects)
I was gaining 2kilos a day on hydro and was on it for 14 days, but it did it's job and the water retension eased over a week or so after I stopped taking it

the pred in lower doses such as your 20mg dose wouldn't (well shouldn't) be a big issue
I wouldn't mess with the dose myself, take te proper dose an let the pred do it's job, the quicker it cn do this the quicker you will feel better and the quicker you can get off the pred
the more you plat with the dose the longer you will be on it an risk having too increase it if things get worse

good luck
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03-10-2010, 07:55 AM   #16
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My Butt Hurts said:
I personally wouldn't play around with the dosage. If they put you on pred, you must need it. I would take it as directed, that's how it will help you the most.

Also - if you are on pred for a while and skip a dose, it can mess with your adrenal gland.

20 mg does seem low to start off with. I usually start with 40 for an 8 week taper. The time I did a 16 week slow taper worked the best.

I agree with MBH..you are playing with a dangerous drug that way.
03-15-2010, 10:20 PM   #17
Chap
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I've tapered from 40mg to zero in about 6 weeks each of the five-six times I've had to go on pred. No moon face. Extra energy that ranges from feeling revved up, to impatient, to downright angry. Still, worth it - it makes the aching bloated feeling go away, in about two weeks.
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03-16-2010, 04:07 PM   #18
Astra
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This drug must definately contain amphetamine and cannabis, or some derivitives, does anyone know?
Regular pot users have symptoms of over eating, paranoia, jitters etc
Regular speed users-insomnia, wired, over energised etc
The bit I don't get is, if it does contain some derivitives and say you eat more, then wouldn't that make symptoms of Crohns worse? by not giving your bowels a rest, but it doesn't, does it?
And we all know about the benefits of pot don't we?
Dan You'll know
03-16-2010, 07:34 PM   #19
Misty-Eyed
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Oh Joan! That reminds me!

I don't think pred does, but did you see the article in the NACC newsletter about research into cannabis and cannabis derivatives? Was quite interesting.
03-16-2010, 07:55 PM   #20
bethyd78
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I would not play around with pred I did and it gave me such a terrible psychosis
I was raving mad at everyone. I told everyone I came in contact with a tongue lashing even the poor guy at the car service center who had been dealing with me for years and he was scared of me after. I even told my Dr. off and she told me if I didn't like the way she handled matters she could refer me to someone who would. She saw me after all that and we talked about my taking myself off the pred. But I couldn't help it I hated myself on it and wanted to unzip myself out of my skin and get out. I wanted to cut a tree down with a chain saw after
Katrina and my husband hadn't been here I might have tried. I was 6 days post op after a exp. lap and was standing on ladders and scrubbing floors no eating, no sleeping, cooking 4 pots of food overnight my husband woke to a five coarse meal every morning. So I took myself off pred. cold turkey and took me 3 mos to recover. And during that time I had to be admitted to a psyche unit for treatment.
Do not play with pre d!!!!!!!!!!!!!
03-16-2010, 08:27 PM   #21
David in Seattle
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On the Pred, I did drop the dose to 10mg from the beginning, and I am getting some benefit with no noticeable side effects so far. The less the better with so many of these chemicals; no sense taking more than is absolutely necessary. I should say I worked in pharmaceutical R&D in an information support position for about 6 years and learned quite a lot in the process, and I definitely know where to look up what I don't have in my head initially. I wouldn't just fiddle with a recommended regime capriciously.

Last edited by David in Seattle; 03-16-2010 at 08:37 PM.
03-16-2010, 09:03 PM   #22
saidinstouch
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Prednisone most definitely does not have any active canabinoids and is actually essentially something your body synthesizes naturally...just at a much higher dose. The glucocorticoid receptor (GR) is sort of a jack of all trades and master of them too. It is involved in embryo development, organogenesis, circadian rhythm, immune function, (fat muscle and bone formation), memory formation, and a lot of other things. It is possible that a downstream protein (one that GR leads to production of) is a canabinoid receptor or ligand that could increase canabinoid like outputs, but I can't say for certain as I haven't looked at the gene expression and genomic association data for that particular information.

Astra101 said:
This drug must definately contain amphetamine and cannabis, or some derivitives, does anyone know?
Regular pot users have symptoms of over eating, paranoia, jitters etc
Regular speed users-insomnia, wired, over energised etc
The bit I don't get is, if it does contain some derivitives and say you eat more, then wouldn't that make symptoms of Crohns worse? by not giving your bowels a rest, but it doesn't, does it?
And we all know about the benefits of pot don't we?
Dan You'll know
03-17-2010, 05:13 PM   #23
Astra
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Bloody hell Beth! that is so frightening, I'm worried now,

No Misty
I didn't read that in NACC, but someone else told me about it. but I have read about pot in other articles and it's medicinal benefits for pain relief, like MS, it does have anti inflammatory agents in the cannaboid part of it, I've smoked it loads for an old neck injury, it does work, whether its psychological or what? Oh how we laughed!

Thank you saidinstouch
for your explanation, that makes more sense to me now,
I'm still unsure why, when we over eat with the Pred, we don't make ourselves worse, I've felt much better on Pred, but at the same time, eaten the biggest load of crap ever! got a proper sweet tooth, something I wouldn't normally do, had bloods checked for diabetes as well, negative
03-17-2010, 07:19 PM   #24
Kev
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Hi David... I was on pred (on, taper off, flare.. back on a higher dose, taper off, flare... well, you get the picture) for 11 months a couple of years back. I posted a daily diary on here (but every case is different, and the quick synopsis most folks here will proffer will give you just as much info... and the rest you'll pick up as you go along) called Prednisone and me, a personal diary. Anyway, the statement that pred is evil is pretty damn accurate... It will make you feel like superman one minute... cured, symptom free, invincible... then make you cry the next... Tapering off is hell, the flares typically never fail to materialize (that is the part that really makes you cry) and the worst of it is that pred is typically just a stop gap measure. The side effects, the long term risks make it too risky to stay on forever. Still, the doctors insist on putting us thru it, just in case you turn out to be the one case in a million (or whatever the odds are) that the pred makes your disease go into long term remission.. basically its a crohnie crap shoot.
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03-19-2010, 09:13 PM   #25
Lydia
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I have never had the rebound flares with pred. It always happens a few months after coming off of it. I hope I stay that way. I would hate to be on it long term. I am loving it right now though. Its not as bad as my other pred experiences. I used to be really moody and bitchy on it. I does effect my mood a little bit with crying here and there but its not as bad as I remember.
06-10-2015, 02:03 PM   #26
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hey guys. ok, 21, crohns, been on pred for four months now (40mg), started humira, tapering pred, issues have risen at 20mg every time i attempt a taper, ie, loads of pain at ,my intestine narrow site. advice? pointless to taper tp be just on humira if this inturn results in icu visit again....ill do anything to avoid going back if i can.

on 20mg now
next humira shot 6.18.15 plan to taper to 15mg then....
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