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Starting Predisone for first time--advice?

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Posted 2/8/2008 5:19 PM (GMT 0)
Well, after much trial and error for weeks, the rectal meds did not work at all and I had to break down and go on a hopefully steroid taper.  I'm starting at 40mg and then decreasing every four days. Is there anything I should know about this drug--that the doctor didn't mention?   Should I be taking any supplements or avoiding anything?  How soon and at what dosage should I expect the moon face?  And at what dosage would it start to go down?  Has anyone actually ever successfully gotten off this drug, or do you find you can only taper down to so much?  Any advice would be much appreciated.
Posted 2/8/2008 6:26 PM (GMT 0)
I have been on the prednisone many times. I have never really noticed the moon face that alot of people talk about. I did however notice that my eyesight seems a little blurry (while taking the prednisone) and I get agitated pretty quickly, along with feeling jittery. I have always had very good blood pressure, but noticed it got a little high while on the prednisone. It did decrease again once I stopped the pred. I was first on the prednisone when first diagnosed 25 years ago. Stayed on it for a few months. Then I was in remission for many, many years. Took a couple of courses of prednisone in the past year and a half. I think it is possible to come off, and hopefully I won't need it again, but you just never know.. Good luck, hope it goes well for you.
Posted 2/8/2008 6:57 PM (GMT 0)
I started 60mg a day in sept and then went to 60/40 alt days in Oct and have been at that until yesterday now going down to 40mg a day.

The first month, I had mood swings and hot flashes, those went away mostly a couple months later, I think it was a shock to my system.

I got the beginning of moonface in Dec and it has continued to get worse, I have never had a double chin and now have one, my neck is huge.

I have put on 17 pounds since Nov. I think some of it is from edema from the prednisone.

I still have mood swings, but not as bad, though I feel grumpy alot and generally kind of blah also my mental clarity is not the same as before.

However, in my flare I was a zombie, barely functioning, I would take this over that any day.

My recommendations, take fosomax and 500mg 3xday of cal + vit D to protect your bones. You need potassium so eat a banana a day or take a supplement, I like Langers cran/rasp juice plus (it has 480mg of potassium and I add it to my water to make it taste better, I got really bad leg, calf, foot and toe cramps when I had low potassium (my last test showed good potassium levels and I have not had bad cramping). Also watch your salt (1500mg or less a day my doc told me), carbs and simple sugars. I think my moonface would not be as bad as it is if I had watched my salt. Also my labs show high sugar levels and pred can cause diabetes, so now I have to watch my sugar, I am not diabetic but I need to be careful.

to surmise my thoughts on prednisone, it stinks the side effects are pretty bad, however I need it to get well and the benefits to me still outweigh the risks (though I think the line is pretty close now).

*please note, my situation is probably different than most, check my sig and you'll see.
Posted 2/8/2008 6:58 PM (GMT 0)
A few side effects to watch out for - major mood swings, major munchies, insomnia, superhero powers - meaning that you feel like you can do anything! - bursts of energy similar to adrenaline rushes.

Your first time on pred may be relatively side effect free. It seems like the more you're on it, the worse they get.

Make sure you are taking at least 1500mg of calcium while on pred to combat bone degeneration.

Many people have sucessfully tapered. Many have not.

Make sure that you have "Stablized" before tapering. Watch out for a day or two of "rebound" symptoms after each taper - don't freak out about it.

Let us know if you have any other questions. I hope the pred helps and you only have to use it for this quick taper!
Posted 2/8/2008 7:03 PM (GMT 0)
Get a base-line bone density scan so they can tell if you are losing bone-density from doses of Steroids....take calcium supplements.

You can ask your GI for water-pills (lasix), that will help with some of the bloating.

I hate Prednisone, there might be better alternatives than Pred. Ask your GI. You may also want a second opinion from another GI.

--Keith
Posted 2/8/2008 8:35 PM (GMT 0)
Be really careful to limit your salt intake. Pred makes a lot of people crave salt, then they retain fluid and that contributes to the moon face and swelling. Take it with food to avoid stomach irritation, it can cause stomach bleeding in some people. Take it in the morning, although you may not sleep well anyway because it tends to cause insomnia. And warn your friends and family that your mood may change. Some people get depressed, others get irritable.

Good luck, and I hope you can taper off the Pred soon.
Posted 2/8/2008 8:49 PM (GMT 0)
Hubby gets irritable/short tempered, ravenously hungry all the time, which certainly contributes to his weight gain, but no moon face. He's been on it many times and always been able to successfully taper off until this last flare almost a year ago. Since then he's flared back up each time he's tapered off, but different people react in different ways, as you can see from other responses here.

Best of luck to you - I hope you are able to easily taper off and stay off the stuff for a good long time!
Posted 2/8/2008 9:44 PM (GMT 0)

Thanks everyone so much!  Gee, you think the doctor would have told me about the salt/sugar/potasium thing!  I already have osteopenia being menopausal so I fought going on this tooth and nail, but finally had to give in I was in such bad shape.  I think the inflammation has going further up than usual and that's why all the rectals did nothing.  I will up my calcium too.  I'm just concerned because you need to take quite a bit of magnesium with it to get full absorption and I know that can make for loose stools. 

 I just warned my boss if I bite his head off to know that it's the pills not me---he was glad I warned him :)  I better tell my hubby.

Posted 2/8/2008 9:58 PM (GMT 0)
lol, yes, I forewarnd my husband and it was good. for me sometimes, it helps if I just go to another room and read a book or take a bath to cool down. I know I will probably have a pred flip out on him this weekend seeing how I have to watch my sugar and carbs now and pred does give me quite the appetite.

there is a book called 'coping with prednisone' and one of the other members recommended it and I found it really useful, it answers a lot of questions and helps you feel not alone and that what you are going through may seem crazy but it's actually normal (does that make sense?) I think the book was like $13 + shipping from amazon.
Posted 2/8/2008 11:19 PM (GMT 0)
Starting at 40mg and tapering quickly, any side effects should be minimized. I had no problem tapering off it quickly, but I was doing alot of other things to support healing.

The book is Coping With Prednisone: It May Work Miracles, But How Do You Handle the Side Effects?

http://www.amazon.com/Coping-Prednisone-Miracles-Cortisone-Related-Medicines/dp/B0002Y6AEO/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1202512738&sr=8-1

Weight training will help restore bone density.

Posted 2/9/2008 12:57 AM (GMT 0)
I have diabetes which I have been able to control with dieting, however when taking Predisone (20 mg) my numbers jumped from the 130's to 455. I had to go on medication for this. Another thing I have noticed is it weakens my voice (strength and tone).

Best of Luck,

JL

Posted 2/9/2008 3:39 AM (GMT 0)

I checked out the book.  Reads pretty well in the "Search Inside."  I bought the latest edition at a good price.  Thanks for the suggestion Beth and Princesa.  Looks like I'll need all the help I can get.

Wow, JL, I sympathize-- you've had your share of bad luck.  And I thought I had it bad.  I've already lost a breast and a uterus---trying not to lose a colon too or pretty soon there won't be much left of me.

Posted 2/9/2008 3:41 AM (GMT 0)
Ditto on the advice above.

Hubby is now off of it which took quite awhile. The last dose began in May in addition to the azathioprine that was started which finally made the difference in him heading towards a remission. Finally tapered off in December.

Good Luck - I hope it is a fast successful taper for you.
Posted 2/9/2008 3:45 AM (GMT 0)
never had issues with Pred. Just had a never ending appetite and some back acne.
Posted 2/9/2008 6:08 AM (GMT 0)
the only thing that I don't like about the book is the diet isn't quite right for someone with UC. I also got the impression that the women who wrote the book didn't really have that much experience with the drug. It seems to be the only book that focuses on dealing with the problems of predisone. I was kindof surprised that there isn't more books on the subject....
Posted 2/9/2008 6:17 AM (GMT 0)
It can take more than a few weeks for rectal meds to kick in depending on the severity of disease activity, I wouldn't give them up just yet...you can still take oral pred at the same time which is what I would do. And as far as the oral pred goes, take it first thing in the am so it doesn't give you insomnia which it can be famous for...and not everyone experiances side effects on pred, I never did and I was on and off it many times over my 16ish yrs with IBD.

:)
Posted 2/9/2008 1:21 PM (GMT 0)
My only recommendation is to pray that you can get off it. I am told that I am steriod dependent and been on it 1 1/2 years. Good luck
Posted 2/10/2008 9:49 PM (GMT 0)

Hi Chili - my husband too proved to be steroid dependant after being on it more than off it with a few unsuccessful tapers for a year 1/2.  The imuran (azathioprine) is what finally got him off the prednisone.  He has monthly blood tests to monitor 3 different things and then the doctor will prescribe another month's medication.  So far the imuran has made a major difference for him.

The prednisone in all likelihood induced his osteopena and he is on Fosamax once a week for that.  I was very nervous and scared about the imuran but the Dr reassured me it is a safe drug if he can tolerate it and it is monitored properly.

Obviously he would prefer not needing these meds but having him experience a terrible flare that kept him housebound for many months and to have some semblance of a life now it is a trade off.

The prednisone initially helped him until a year later WHAM he went into that awful flare that just took so long to get into some kind of control after the year 1/2 I mentioned above.  I hated what the prednisone did to him.  I pray it is never suggested to go back on it again as he is still in withdrawal from it and experiencing things that will take a while to clear up from what I have been told and read.

We are both now on a 2 week regimine to clear up H Pylori and man are these meds harsh.  This is our 4th day and I don't like how I am tolerating them which is not well at all.  My main fear and concern is that these meds do not make him regress in any way.

Good luck.

Posted 2/11/2008 2:23 AM (GMT 0)
Another UC wife-
Sorry to hear about your husband and all the drama with UC. I seriously think that IF I had it to do all over again, I would refuse prednsione. I love the drug for me bc no side effects for me other than I can't get off it. I often wonder if my body could have fought UC without prednisone but they resorted to it so quickly. I was on 60 mg of prednsione within 3 weeks of being dx'd with UC. So many people seem to have such a hard time getting off it.
Posted 2/11/2008 2:41 AM (GMT 0)
That's my biggest fear that I would not be able to get totally off of it once I got on, so I fought it all the way.  But when weeks and weeks of rectal meds did nothing, and I was suffering so, I had to give in (I was so inflamed I couldn't keep enough of anything in rectally for long enough).  I've already got the insomnia and I've only just started (take it with breakfast), not looking forward to whatever else comes but feel I have no choice since I had an extreme bad reaction to 6MP.

Posted 2/11/2008 3:02 AM (GMT 0)
I think if you are tapering that quickly I doubt you will notice the major physical side-effects like moon face, etc. I have not had any problems with moon face, etc, on my tapers. I just have had some night sweats and irritibility, and some hair loss (which always reverses itself when I am off my meds). Good luck to you!
Posted 2/11/2008 4:08 AM (GMT 0)
Not everyone suffers from the side effects of pred either...in all the years I was on and off of it I never did, never had moon-face or much of the awful side effects, the worst I ever had on it once was tiny little acne spots all over my back.

:)
Posted 2/11/2008 8:15 AM (GMT 0)
Pred is a blessing and a curse. I've been on it a couple times, the second time I had a hard time tapering off of it. It worked within days of starting taking the pills which made living and functioning possible! but, the side effects suck. I didn't get the emotional side effects (euphoria/depression), but i got the weight gain. I started getting moonface within a couple of months of being on the drug, gained 20lbs both times (which I'm STILL trying to lose the remainder of), and had a huge appetite. I also got night sweats and joint pain when tapering (some mornings I'd hobble around for 1/2 hour). I was also unaware of taking calcium supplements for a while, and I would HIGHLY recommend taking 1500mg/day (with vit. D). I was told to take them 500mg at a time a few times a day.

I have to say that I wish you the best with a fast taper off of pred, but mentally prepare yourself in case you flare shortly after or during the taper. It sucks, but I had to taper super super slowly (2mg at a time, then .5mg at a time for many many months). I was in remission for less than 6 weeks, and am now on a miracle drug that is the only thing that allows me to be off of pred (see below).

good luck!
Posted 2/11/2008 3:43 PM (GMT 0)
also for me, with all the pred side effects, I have not gotten insomnia, in fact it is easier than normal for me to fall asleeep, that may be the azathioprine???
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