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Good experience with Prednisone?

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Crohn's Disease
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Posted 11/3/2011 2:49 AM (GMT 0)
Hello,

I'm posting here for the first time since I though for the last 15 months that I had Ulcerative Proctitis, but my last colonoscopy just a month ago showed not only 15 cm of the rectum inflamed, but also 4 cm up in the splenic angle. Biopsies didn't provide further light, so the doctor said it could be either UC or CD, and that it doesn't matter because the treatment is pretty much the same for both.

Anyway... After the colonoscopy I haven't been doing very well; my main problem is bleeding; I feel like I bleed a lot, I usually leave the toilet water all red every time I go to the bathroom, I'm also having cramps, tons of gas, and sporadic painful diarrhea. Over the last 2 months I've been eating pretty badly; I've lost 8 kilograms (about 18 pounds I think) in the last 6 weeks, so my doctor suggested that it was time to get on Prednisone.

I was on Pred once, when I was diagnosed last year I was on 20 mg for about 3 weeks; it did nothing so it was bumped up to 40 for a couple of days, then quickly tapered down to 30 mg and then tapering 5 mg every week or every 2 weeks, I don't remember. I was on it for a total of 8-10 weeks. I experienced only minor side effects (night sweating, a little insomnia, some weakness and some minor mood swings), I didn't gain weight or had blood pressure/heart beating issues as I've read others have. Now, however, I've been prescribed to take 40 mg for 1 week and then start tapering down 5 mg each week (down to 35, then 30, then 27.5, then 25, then 22.5... etc every week), so it looks like a more intense period.

I don't remember much about being on Prednisone, so I came back here to check what you guys had to say about it and all I found was horrible, terrifying experiences, so I'm wondering... has anyone had a good experience with Prednisone? (by good I mean not "too bad", I know Pred is an awful drug that has a lot of side effects, but I'm under the impression that pretty much anyone that takes it is supposed to live a miserable life of side effects...). So, please help me with this, I haven't started yet; I was supposed to start tonight but I guess I'll start tomorrow morning, now I'm just too scared!

Thank you all for your examples, encouragement, support, and for just being there as an evidence that I'm not alone in this.

Cheers from South America!
Posted 11/3/2011 3:22 AM (GMT 0)
I am a long term user..My initial reaction was much like you describe on side effects..I have ended up on blood pressure medication and thyroid medication. It did help with bleeding, mucous, and big D..I was able to start eating again..It also helped with the joint pain and doctor clld it remission..Long term usage is different than short term usage..I was getting injections along with pills of steroids and antibiotics.. My initial reaction was insomnia and moodiness but a new healthy appetite and started enjoying outings with my husband..I was afraid of steroids before I started predisone..It is cheap and effective but it lead to long term usage..
Cindy
Posted 11/3/2011 3:29 AM (GMT 0)
It's the drug we all hate to love. Yes, there are side effects and I always just brace myself and deal with it. I'd rather have insomnia for the time I'm on it than symptoms of my Crohn's. I find it's worth any side effects because it is effective. Focus on the benefits, and remember everyone is different. It sounds like you coped just fine with the side effects last time, so no reason to assume it'll be different this time.

Hang in there!

Sarah
Posted 11/3/2011 4:36 AM (GMT 0)
1) Treatment for UC and CD is pretty much the same if CD is affecting the colon and/or rectum (as UC does) major differences between the 2 are; CD can affect the entire GI tract from anus to mouth, UC is limited to the colon/rectom, CD inflammation can go through the layers of the intestinal lining, where with UC it remains on the surface of the lining only...you could ask your GI how the inflammation looked on your scope, if it looked to be surfacable or deeper, the biggest clue between the 2 seen via colonoscopy is CD inflammation is patchy (skipped patterns of inflammation with healthy tissue in between) with UC the entire area will be inflammed with no skipped patches as it is with crohn's.

2) Proper/common protocol for prescibing prednisone for IBD (either UC or CD) generally is starting at 40mg for the first 2 weeks (especially if the patient is at a severe point with their disease) and then tapering down 5mg per week, often when reaching 10mg/week then cutting one of the 5mg pills in half and tapering by half each week until the last week you're taking 1/2 a pill for a week, this is a slow and safe taper off of pred.

Taking all of your pred first thing as early in the am as possible will aid with sleeping issues compared to splitting your dose half and half (am and then pm).
Posted 11/4/2011 8:39 AM (GMT 0)
I was initially put on Pentasa and Entocort when I was first diagnosed which helped me but ever so slowly. about a month later I had to be put on prednisone 40mg with a 10 mg taper so I was on it about a month or so (I couldn't afford another month of the Entocort because my insurance company said I had reached my limit) I remember telling my GI that I thought it would have been a better idea to start me on the prednisone as it worked much faster and made me feel great for the short time I was on it. Who doesn't want to feel like a superhero and have all that energy after you've been anemic, down in the dumps, and hurting for so long?

If you are on it for like a month or so.. do it.. if it's going to be longer I don't know. There are just too many bad side effects associated with long term use.
NY VEGGIE
Posted 11/4/2011 5:02 PM (GMT 0)
I'm on long term treatment of pred. This is my second year. I started off with 40 mg, then reached 30 mg and stayed on this dose for 3 months. I was symptom-free and could eat whatever I wanted. Then I started tapering 5 mgs/week until I reached 2.5 mg. It was then when I flared up and had to be hospitalized and the dose had to be upped again to 15 mg. Meanwhile, I developed a moon face and now after nearly 1 1/2 years, I gained 14 kilograms. At the beginning, I had insomnia and took Xanax in order to sleep but with tapering, things came back to normal and I sleep without any sleeping pills. Now, I tapered it again to 7.5 mg but this is the least I can reach until one day MTX would kick in.

Hope, it puts your symptoms soon under control and you won't need it for a long time:)

Take care!
Posted 11/5/2011 1:27 AM (GMT 0)
NY Veggie I understand your concern over the side effects over long term usage..This was not the plan for me but here I am over three years later...I am on the same taper issues as minnietoty..It did damage my teeth and put the weight on me! The initial reaction was amazing being able to eat, not have D, joint pain, and energy..The insomnia and mood swings were awful..This does subside after awhile..I have to take the predisone first thing in the morning no spliting doses..I have not been on biologics or other steriods except predisone..I do not heal so well from cuts or procedures..
Cindy
Posted 11/6/2011 12:02 AM (GMT 0)
I'm on 10mg's can't seem to get lower, I flare in my throat and mouth and esphogus really bad without it, but it's making me anemic, and I can't take Iron in any form. other than that no other side to speak of, really to low to get on the mental part, I've been on that road with 60mg. dawg, 120 that is intense. I will say this instead of waterboarding in Iraq, they should have said suck on this pill until it is disolved in your mouth, I'd tell anybody anything they want to know if I had to suck on one of those horrible tasting things.

AG
Posted 11/6/2011 9:19 AM (GMT 0)
What ever works for you. I was put back on Entocort when I decided to buy it from Canada so I could stop the prednisone. Also, all my doctors were very concerned about me staying on it. But as you know with auto-immune diseases prednisone is the go-to drug of choice to get things under control so I expect to be on it again at some point but hopefully not for a while.

I will never forget my first response to it tho... All of a sudden I was so clear-headed again. Yes it made me hungry, and made it a bit hard to sleep but that is what xanax is for! And I was strong again with tons of energy. I think it was by the second week that I became the queen diva and also very emotional.

Ha I agree AG. The army would have had much better results if they used something cheap and easy like prednisone to get to those prisoners. They would have all been crying and reallly hungry much quicker. Come to think of it, I can't imagine that they didn't use drugs like LSD.. I mean they blasted music, used heat and freezing cold, scary dogs etc etc.
NY VEGGIE
Posted 11/6/2011 12:29 PM (GMT 0)
has anyone had a good experience with Prednisone? (by good I mean not "too bad", I know Pred is an awful drug that has a lot of side effects, but I'm under the impression that pretty much anyone that takes it is supposed to live a miserable life of side effects...).

Not me. All my experiences with Prednisone (or prednilisone, as it's known here) have been not "too bad" at all. Starting out on the high dose, I had more energy and it was good. No obvious bad side-effects. The only drawback to Pred for me was that the good things - the increased energy, reduction in Crohn's symptoms - wore off quickly once I reduced the dose.

But yeah, I've never had any problems with it. Was on a short course really recently. Hard to say if it worked 'cos I was on about five other things at the same time, including antibiotics and Remicade.

PS: I suppose I should add I have never been on a long course of steroids though. A two-month taper has been the usual length of time for me, with a week spent at 40mg, week spent at 35mg, and so on, down to 0mg.

Post Edited (NiceCupOfTea) : 11/6/2011 5:34:56 AM (GMT-7)

Posted 11/6/2011 9:55 PM (GMT 0)
I have been off and on pred since 2007. My usual dose is starting on 40mg x 7 days, 30 mg x 7 days, 20... then 10... This time I am going to be on it for 14 days for each dose. I normally get the moonface, flushing, some insomnia, and gain 10-15# but like the others said, to me it's worth the side effects because I'm not on it for long periods of time.

Good luck to you.
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