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Crohn's Disease
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Posted 3/26/2011 10:25 AM (GMT 0)
I've had Crohn's for 2 years-haven't achieved remission.  Lately, more cramping, weight loss.  GI changed meds from Lialda to Apriso and from LDN pills to LDN cream a week ago.  Cramps increased this week.  Yesterday, GI prescribed prednisone 10 mg 2x a day for 2 weeks, tapering by 5mg every two weeks.

I'm eating a bowl of cereal getting ready to take my first dose and I am scared.  We are scheduled to go on vacation with our kids and grandkids April 20 to April 25. I will be on 15mg, tapering to 10 mg during that time . I'm afraid by then I'll be a puffed up maniac.  Do any of you have positive things to say about prednisone?  

I hate this DD.  It has prevented my husband and me from doing so many things.  Sorry for the whine but I just seem to be getting more and more depressed. 

Posted 3/26/2011 11:41 AM (GMT 0)
Hey cannynancy, I don't think you'll have to worry to much about it, since that's not a super high dose and your taper is pretty quick. I'm tapering from 40mg down to 30 now and I've been fine. It has helped get my symptoms under control but I've also just recently added 6MP and my dr moved up my remicade. On 40 I didn't start to poof up until about 3 or so weeks later and it wasn't even that bad (it's gotten worse lately) I was moody at first and the night sweats were terrible, but it passed after about a week or so (still have night sweats occasionally). I just warned people that I may have mood swings and even now if I seem out of the ordinary they know. Good luck to you!! I hope the pred kicks it in gear for you :)
Posted 3/26/2011 12:33 PM (GMT 0)
I'm on my first time now, 30/day. First couple of days had me pretty tense but it settled in and I haven't had any issues yet. It's been two weeks and has done a good job of diminishing symptoms. I know the long term effects can be different but it's the first relief I've had in months. I'm sure it effects everyone different but that's not a high dose. If I were you, I'd look forward to the the help it might give with the cramping. My cramping went from very very painful to quite mild and it has stopped the fevers and nightsweats.

If anything, just tip anyone you live with off that you might be a little high strung for a couple days, but it will pass.
Posted 3/26/2011 2:39 PM (GMT 0)
You aren't on that high of dose, so I wouldn't worry about it. But...I would also like to say, do you want to enjoy your vacation? If you don't take the Pred your are just going to feel sick, and then what fun will your vacation be then? Just something to think about. Good luck!
Posted 3/26/2011 3:03 PM (GMT 0)
Oh Prednisone! The Love/Hate realtionship us Crohnies have with that drug. I agree with Nanners...it will help get your symptoms under control letting you enjoy your vacation. I think you're on a low enouogh dose and tapering quickly enough that your side effects should be minimal.

Good luck!
Posted 3/26/2011 5:55 PM (GMT 0)
When I was on a 40 mg for four months thats when I blew up like a ballon, and I also started Remicade at the same time. Last time I was pred I was on 40 mg for less than month and had no problems. So I don't think you have much to worry about, plus I'd rather be puffed up in then stuck in bed sick just my opinion :)
Best wishes!
Posted 3/26/2011 10:20 PM (GMT 0)
Thanks all for the positive information. You're right that I need the Pred to feel better. The kids and grandkids are scattered so having everyone together is a big deal for me. I guess I was having a pity party this morning. Sorry!
Posted 3/26/2011 11:18 PM (GMT 0)
Don't apologize for your pity party!  I'm sure we all can say we've had one...I know I have.  Taking anything new is scary, especially when you hear horror stories about the side effects and don't know how you're going to react. 

Have a great time with your kids and grandbabies!

Posted 3/27/2011 4:26 AM (GMT 0)
Have you ever taken pred before? I personally love me some prednisone. I get euphoric and hypomanic and get tons of stuff done. I've only taken it a few times - 3 times as a 5-day burst (50-40-30-20-10) for asthma, and once for a 3 month sojourn to treat an awful Crohn's flare (60 mg for a month, then a slow taper). Even on that 3 month joy ride I did not get a moon face or gain weight. My biggest issue was insomnia, which did get annoying towards the end.

I agree with the others, 20 mg is not that much.

Any more thoughts on the mesalamine enema??
Posted 3/27/2011 4:44 AM (GMT 0)
I wouldn't worry too much. Like others said it isn't a super high dose. I was on higher doses of that and did not get the moon face. I did have some mood swings at first, but I realize everyone is different.

However I loved being on Pred. I just felt SOOOOO normal. I was able to eat anything I wanted without getting so much as a cramp. I had all my energy back, and was able to do things and get things done that I haven't in years. I was myself again. We went to Disneyland when I was on it, and it was such a great trip. Eating out in sit down places, eating mexican food. My family had more issues then I had with food that trip! Shame it's such an evil drug that we can't stay on it. I sure wish they'd find something that made me feel that way again without it being damaging. Because I felt wonderful. Tapering at the very end (those last 5 mg were hard, but I was on it for about 4 months). But with the right tapering schedule I did okay.

I hope it gives you the relief it gave me. It might make for a more wonderful vacation!

Posted 3/27/2011 9:43 AM (GMT 0)
Oooh, be careful with that drug!! I was on the lowest dose possible and I still gained about 10 pounds and looked like an inflated balloon. The drug worked on my brother though. It helped his pain enough to allow him to eat and get healthy so he could get surgery.
Posted 3/27/2011 10:17 AM (GMT 0)
Thanks for all the kind thoughts.  After a pretty cramp-free day, I had an unpleasant night.  I was awakened at 1:30 am with cramps and I was dripping wet from night sweats.  Had a soft bm and finally went back to sleep.  Up again at 5 to have another soft, gassy bm.  checked weight and lost another pound since yesterday.     I am now at my lowest weight ever.  I would look foward to gaining weight while on prednizone.  I'm off to have cereal and then my prednizone.  Hope it kicks in soon--like today : )

I can't tell you how glad I am to have found this board.  You folks are all wonderful at sharing your experiences and giving support.  Family and friends don't always understand although I know they are trying.

GI has not mentioned enemas again.  I'm sure he wants to give the "big P" a chance before adding anything else to the mix.  I do wonder how long it should take before I notice a difference.  I was thinking of asking him to give me a script for a stool test just to make sure nothing else is going on.  I had c-diff right before I was dx with Crohn's.  I will be having my blood tested in another week.

Again, bless you all for your support!    

Posted 3/27/2011 2:10 PM (GMT 0)
I agree with others re the dosse and the expected reactions. I was on pred and high doses made me crazy while the lower doses were fine. Also, take it in the morning so you can sleep better.

I was wondering if you have thought about the food you are eating. I know I would be sick if I ate cereal and milk. If I am not feeling well I only eat very very simple foods that I know I can handle.

I changes my diet about a year ago and that is what really worked for me.

Dave

Posted 3/27/2011 2:59 PM (GMT 0)
I agree with Dave 100% in the time of day to take it. You should take it as early in the morning as possible, to help avoid the insomnia side effects. Good luck!
Posted 3/27/2011 3:32 PM (GMT 0)
Thanks for the suggestion to  take early in the am.  I will do that since I am up early any way.  As far as milk and cereal go they are one of my safe foods--but I don't use cow's milk since I am lactose intolerant.  I use rice milk.  My supermarket now carries 1/2 gallons of coconut milk and I was thinking of trying that, but it has 1/2 the caloriesof rice milk and I am desparate to gain weight. 

I'm still not sure what improvement I should see in 24-48 hours, but I hope it will be something dramatic like a normal bm  or a gain in weight.  The things we crohnies wish for : )

Posted 3/27/2011 3:36 PM (GMT 0)
Cannynancy, don't take it in two doses. (I just noticed that). I take it all in one dose, first thing in the morning, as early as possible. If I woke up at 5 am, I would take it then. I usually woke up a couple of hours later, and would eat then. Hope that helps, and hope you have a great vacation. Hugs!
Posted 3/27/2011 3:55 PM (GMT 0)
On the medication pamphlet that comes with at least that came with mine strongly suggest trying to take before 9:00 AM and try to take it the same time every day, just something I remembered.
Posted 3/27/2011 3:56 PM (GMT 0)
Thanks Nanners. Yesterday I took the pred in 2 doses, but this morning I took it all at once. Hope it calms the night sweats.
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