HealingWell
Search Close Search
☰

Honest opinions about Prednisone

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/16/2014 11:24 PM (GMT 0)
Hi everyone-

I will try to make this short. I have been lurking on this site for over a year now and I am interested to hear everyone's experiences with Prednisone. I am 37 years old was diagnosed with UC about 4 years ago during a pregnancy, but have done OK until about a year and a half ago. I started into a flare and have not been able to get out of it. I have been on Lialda, done hydrocortisone enemas and mesalamine enemas off and on. My flare doesn't sound near as bad as some of the stories I have heard on this site, but it's still terrible. I have times when I am only having 2 BM's a day with little to no blood, then I have times when i am going 6-8 times a day with blood every time. I have switched doctors and am very comfortable with my new doc, but he wants me to try prednisone and I am horrified, mostly because of the stories I have heard on this site.

So, I am wondering if it is worth the risk and if it may possibly put me into remission? I am really worried about the "roid rage", inability to sleep and other side effects. Please share the good, the bad and the ugly with me. Thanks! -Michele

Oh, I am currently only on Asacol HD, 6 pills/day.
Posted 4/17/2014 12:06 AM (GMT 0)
It's definitely worth the risk if you don't fall into the trap. Prednisone is not a cure and it only works while you take it. You must have something else as a maintenance treatment (like the Asacol HD) to keep you in remission once the pred is tapered off. The trap is prednisone puts you in remission, you get off it, symptoms return (often before you're even off) and then your dosage is increased again and again and again and again. You need to get it in your head that it is a one time only thing. You take it, you get off, if symptoms return then you do not go on it again or increase the dosage. If you look at it like that then I give it a definite yes vote. Are you taking any rectal meds? If you attain remission do not ever get completely off meds, EVER, (except the prednisone).
Posted 4/17/2014 12:20 AM (GMT 0)
Hi Gary-

Thanks for the information. I am not currently on any rectal meds. I did a round of mesalamine enemas about a month ago. As with most other things I've tried, it helps, but not enough to get into remission. I really want to get into remission, but I'm just not sure if prednisone is worth it. I see my dr. next week, so I am trying to make my own decision before then.
Posted 4/17/2014 12:29 AM (GMT 0)
I'd say it's worth it if you're a normal UC person who takes one round, gets into remission and stays in remission for a year or more. As Gary said, the trap is for those of us who come right back out of remission or who get relief but not actual remission with Pred or other steroids. Definitely worth a try, I'd say.
Posted 4/17/2014 12:59 AM (GMT 0)
Hi,
I am new here but also wondering about this.
I’ve been on 60mg of prednisone for three weeks after a bad flare, and it gradually brought my symptoms under control. No more obvious bleeding, but still some pain and urgency in the morning so I wouldn’t say I’m totally in remission. Now my doctor has me tapering 30mg for 6 days, then 20mg for a few weeks, then I’m supposed to stop. I’m pretty scared about going into a flare again.
As far as side effects go though, I guess not everyone experiences them that badly. So far I haven’t had any weight gain, joint pain, acne, or major mood swings. Just a little bit jittery. Having trouble falling asleep sometimes is a lot easier to deal with than going to the bathroom after every meal.
Posted 4/17/2014 1:13 AM (GMT 0)
I agree with what Judy said. Many people have an OK experience with prednisone. I have bad luck with it myself, i couldn't taper off and I had awful side effects but some people don't. I think the general response is quick and if you can get on and off within a reasonable amount of time, it can be very helpful for treating UC. The people with the horror stories are usually the ones who end up on it WAY loonger than planned due to relapsing over and over. That's what happened to me.
Posted 4/17/2014 1:40 AM (GMT 0)
Steroids are such a wonderful cure all....but come with a price. It will help you stop a bad flare. As you get on in years and need to use it, you will most likely need it for longer periods of time to stop the flares. They are well worth the side effects, if any. You tend to only hear the bad ones....

The bottom line is that eventually you will become more and more steroid dependent, and that may happen in a year or two, or luckily like me, after 39 years and then you are at the end of the line where you can't get off them. I needed higher doses for longer periods, and they became less and less effective.

I was lucky enough to react well to my first biologic (Simponi) and that's that....I was able to get off them quickly and not need them anymore. In this day and age, long term use of steroids is not recommended with all the other drugs that are out there now. You NEVER want to be on steroids forever.

If not for the biologic, I would probably be facing a run of very serious meds and surgery if they didn't work.
Posted 4/17/2014 1:47 AM (GMT 0)
It is great for short term use, honestly. It may help you to have a plan with your doctor for getting off before you start taking it. Also know that tapering is destabilizing, so you may have a rough day or two as you lower your dosage. Give your body time to adjust instead of running back for more steroids.
Posted 4/17/2014 8:34 AM (GMT 0)
Prednisone has given me no relief and no side effects.
also ive been on it for 10 months (dont even ask why...) and my DEXA scan shows bones are okay.

I wish steroids could have gotten me into remission :(

I would def vote for trying it.
Posted 4/17/2014 10:31 AM (GMT 0)
Pred is good at what it does: stopping uc bleeding and reducing urgency in a hurry which is why it is prescribed. It does, however, have a lot of nuisance side effects that randomly hit people which is why so many complain about it: acne, increased appetite than can lead to weight gain, bursts of energy, insomnia, it can make you very aggressive or emotional, etc. (you don't get em all but a few for sure). Those side effects are temporary, appearing after a few weeks on a high dose of pred and disappear as the dosage is reduced. I believe the benefit of pred outweighs the risk.
Posted 4/17/2014 10:55 AM (GMT 0)
In a nutshell, it's okay for SHORT term use....not okay for long term use. Using it long term with most likely have you ending up with irreversible side effects.
Posted 4/17/2014 2:10 PM (GMT 0)
Strike910, I think you need to approach the rectal mesalamine differently. Many of us have found that rectal inflammation is incredibly stubborn and takes MANY months of rectal meds to get under good control.

Take the oral pred and while you do that, go back on nightly mesalamine enemas. The two together should help you get into remission more quickly than either one apart. But while you taper the pred, DO NOT STOP the rectal mesalamine. Do not stop it after you are done with pred completely. Do not stop it ever. You may start tapering down your rectal mesalamine s.l.o.w.l.y. And ultimately you may find that you only need to use it twice a week.
Posted 4/17/2014 2:23 PM (GMT 0)
Prednisone was nothing short of miraculous for me. It gave me total relief within hours of taking the first dose. And virtually zero negative side effects (some light acne is all). Because my GI determined (correctly) that Lialda was not strong enough to keep me in remission anymore, we knew I had to start an additional long-term maintenance medication so that I would not flare again once I was off the steroids. So we started me on 6mp along with the prednisone. Because 6mp takes a 3-4 months to fully kick in and because my GI does not believe in extended pred courses, I switched from prednisone to Uceris after I tapered off the pred to bridge the gap between when the 6mp kicked in. It worked exactly like my GI thought it would and I am all good today.
So, prednisone is not all bad, it can in fact save you and be a great choice. But you have to have a plan beyond the short term prednisone course to keep you in remission and to keep you out of the prednisone trap.
Posted 4/17/2014 2:27 PM (GMT 0)
The symptoms don't always return when you get off it. I didn't have any side effects the first time I took it except some very mild circulation issues in my hands (hands would fall asleep quickly if raised above heart level). This time I had the emotional side effects for a couple weeks. Not everyone has side effects and not everyone has the same ones. Can you try steroid enemas first? They put me into remission the first time I used them.

Wait, just read your meds. Try Rowasa (mesalamine) enemas before you try pred.
Posted 4/17/2014 2:56 PM (GMT 0)
Prednisone gave me avascular necrosis in both femurs. I had several core decompression and bone graft surgeries and can never take it again unless it is to save my life. Personally, if you have other options, think carefully bc there is no guarantee of safety, even with one course.
Posted 4/17/2014 4:36 PM (GMT 0)
Thanks for the responses everyone. I am really nervous about this choice. I want remission, but I don't want long term effects. I am a full time Special Ed teacher and mother to 3 young kids, so I'm afraid that Prednisone is going to turn me into a sleep deprived lunatic that is running around screaming at my kids and students. And nobody wants that!!

Kazbern and Sara14- my doc had be do a few rounds of hydrocortisone and mesalimine enemas in the past, but he said they weren't a good maintenance med, so I've never been on them for an extended period. I will talk to him about that again on Tuesday.

This disease is stupid!!
Posted 4/17/2014 5:14 PM (GMT 0)
Hydrocortisone enemas are definitely not a good long-term plan, but mesalamine enemas are perfect. Your DR is an idiot if he says differently.
Posted 4/17/2014 6:01 PM (GMT 0)
I think you are worried too much about prednisone side effects. If you are on it short term there really aren't any long term side effects, sometimes there aren't even any short term side effects. As I said in a previous post, the big thing is not to fall into the trap and stay on it longer. You take it and taper off. If it works, it works. If it doesn't then you don't increase the dose back up or do it again. That's the trap and that's where the long term side effects come into play.
Posted 4/17/2014 6:04 PM (GMT 0)
Ok, so what is a reasonable dosage and time to be on it?
Posted 4/17/2014 6:18 PM (GMT 0)

Strike910 said...
Ok, so what is a reasonable dosage and time to be on it?

That's a good question for your GI. You generally want to be on prednisone for as short a time as is possible, and on as low a dosage as possible. However, your body determines how long and how much you need it to recover from a uc flareup. Generally GIs will give you 40mgs of pred to start, although up to 60mgs of oral pred are often described depending on how bad you're flaring (more than that requires administration through an IV and monitoring by a nurse). Some GIs might initially give you a month or two month period to be on pred, although the taper rate is often adjusted based on how well you are doing, and you'll be in regular contact with your GI to make sure the pace is right. Long term usage is pretty subjective. Generally over a year of continuous use is pretty bad.
Posted 4/17/2014 6:54 PM (GMT 0)
Ten different GI's will prescribe prednisone ten different ways. Your doctor probably has his own system. Generally they start at 40mgs. After that it is really just doctor's choice. You could take it 40mgs for one week, 30mgs for another week, 20 mgs for a week, then 10 for a week and then quit. That's only one month which might be a little too quick. I wouldn't take it any longer than two months for sure, hopefully less. There are tons of different ways to taper the med down including going by 5's instead of 10's.
Posted 4/18/2014 12:06 AM (GMT 0)
Also, are most of you on rectal enemas all the time? Do you do them for months and then taper to a few times a week after symptoms clear up?
Posted 4/18/2014 12:37 AM (GMT 0)
95% of the time it starts at 40mg....then works it way down
Posted 4/18/2014 12:39 AM (GMT 0)

Strike910 said...
Also, are most of you on rectal enemas all the time? Do you do them for months and then taper to a few times a week after symptoms clear up?

I think most people do them for months, then taper down to three times a week when in remission
Posted 4/18/2014 11:07 AM (GMT 0)
I was on a taper starting at 40mg and reducing by 10mg each week. As stated it really helped quickly with the urgency and frequency. Side effects for me were that I was wired at the higher doses. It was fine except that I had to take the whole dose as soon as I woke up to be able to fall asleep before midnight.
✚ New Topic ✚ Reply
12