Prednisone Help

Lili · Post by **Lili** » Sun May 27, 2012 5:51 pm

Hi,
I am new-ish here, and could not find a topic for my issue. I usually take 6mgs of entocort and that that worked for me for about a year. In the past two weeks however I have been in a terrible flare and my GI put me on a month taper of Prednisone. I had never been on it before and am just have a really tough time with it. I have only been on it for a few days and I am already suffering with insomnia and mood swings. I can't stop crying. I'm feeling so down - when I can usually cope pretty well with my CC, even during bad times. Can anyone relate? I am afraid it is going to get worse. I am only getting moderate relief so far (but I did only start a few days ago). But the side effects are horrid :((

Post by **tex** » Sun May 27, 2012 7:39 pm

Hi Lili,

I'm sorry that you're having such bad side effects. I've never taken prednisone, but it has a reputation for side effects. Some people handle it pretty well and some don't. You'll have to decide whether or not the benefits are worth the side effects. If it's causing that much trouble already, you may want to consider discontinuing it, because after you have been on it for a few weeks, weaning off of it can be much more difficult, and the withdrawal symptoms can be much worse. It affects different people differently.

Tex

Bifcus16 · Post by **Bifcus16** » Sun May 27, 2012 11:59 pm

Hi Lili,

When you say one month taper on the prednisone, I take that to mean starting you with a high dose, and then you drop the dose every couple of days starting almost from day 1?

How long do you have to stay on the starting dose for before you start dropping it? The common strategy is to hit you with a big dose which is supposed to resolve the problem, and then by dropping the levels it will prevent any dependency issues or withdrawal effects, and avoid it building up in the system as it does take a while to go through the system. I suspect you may already be at the taper point, so your best bet may be to continue with the taper.

So, how do you cope with it? I personally have never noticed it do much for me, except clear up rashes. My mum has it regularly and finds it gives her heaps of energy and she can't sleep. So she deals with it by cleaning the house. She finds the physical exercise helps to 'use up' the energy so she can later get some sleep. Then she is also set up for later on when she gets an energy crash towards the end of the taper. I don't mean to be flippant, as it does sound like you are having a hard time. But seriously, she gets through it by scrubbing the shower at 2am.

I hope others have some better suggestions on how they cope with it!

JFR · Post by **JFR** » Mon May 28, 2012 4:10 am

Bifcus16 wrote:Hi Lili,

So, how do you cope with it? I personally have never noticed it do much for me, except clear up rashes. My mum has it regularly and finds it gives her heaps of energy and she can't sleep. So she deals with it by cleaning the house. She finds the physical exercise helps to 'use up' the energy so she can later get some sleep. Then she is also set up for later on when she gets an energy crash towards the end of the taper. I don't mean to be flippant, as it does sound like you are having a hard time. But seriously, she gets through it by scrubbing the shower at 2am.

I hope others have some better suggestions on how they cope with it!

It's been a while since I have had prednisone but it made me pretty hyper and I too coped by doing a lot of cleaning. It did wonders for my closets. But I have a friend who was so badly effected by it that she can't take it. It made her psychotic. So I think you have to decided whether it is helping you enough to put up with the symptoms or that the side effects are so bad that you simply can't take it, especially if it is not resolving your symptoms. Never any easy answers it seems.

Jean

Gloria · Post by **Gloria** » Mon May 28, 2012 12:54 pm

There's no comparison between being on prednisone and being on Entocort. I also had difficulty sleeping when I was on prednisone, but since I had to get up for work, I just endured it. As you know, Entocort doesn't cause many side effects. I hope you can get off the prednisone soon. I don't ever want to take it again.

Gloria

Deanna in CO · Post by **Deanna in CO** » Mon May 28, 2012 4:07 pm

Lili,

I am on a five-day prednisone "burst" for my asthma - 40 mg/day but only for five days. I'm on day 3 and am finding the opposite reaction to what people here are reporting - it makes me tired and somewhat depressed. I agree with others here, though - you need to let your doctor know what you are going through. Prednisone can bring about some dangerous mood changes, and your doctor needs to be aware and monitoring your reactions. I would call him as soon as you can reach him directly - most likely in the morning if the office is closed for Memorial Day like mine is. Do you have someone who lives with you who can monitor you to be sure you don't need an ER visit? (I don't mean to scare you - it sounds like you are probably OK overnight - but steroid-induced psychosis is an ugly thing and if the prednisone is bringing on mood changes, I recommend caution.)

Hopefully it will at least help bring about some control for your MC in the process.

Please keep us up-to-date.

Deanna

Lili · Post by **Lili** » Mon May 28, 2012 7:49 pm

Thanks everyone for all the replies- I REALLY appreciate it. Yes, I am on a high dose (40mg) for a week, then I go down gradually by 10mgs a week and slowly reincorporate my entocort. Today was a bit better because the Pred has pretty much cured me of D (still some cramping, but I have control, etc) and I was able to get out the house for a little bit and do some nice things for myself. I had been stuck at home basically for 2 weeks before that and that no doubt added to depression. I am still getting mood swings though. I live with my husband and he is looking out for me- thanks for the tip. The sleeplessness is the worst. Unfortunately I also have a bad back (lucky me!) so its hard for me to all cleaning I would like with the extra energy :) Reading a lot and getting caught up on movies/tv shows.

I'm going to check in with my doctor tomorrow just to be on the safe side. Thanks again everyone for your support, I will let you know how I'm getting along, and will be venting a long the way!

Deanna in CO · Post by **Deanna in CO** » Mon May 28, 2012 8:51 pm

Lili,

Also, my pharmacist warned me that prednisone is a stimulant and told me not to take it after dinnertime. If it's bothering you even then, you might try taking it at breakfast and then at lunch, rather than 12 hours apart.

Deanna

Lili · Post by **Lili** » Thu May 31, 2012 8:06 pm

Thanks for the tip Deanna!
I'm starting the taper down tomorrow and I have been feeling a lot better since I have been able to get back to work. Mornings are hard after the poor sleep but at least I can do things again with the D under control. Still have my mood swings but being able to get out of the house and be productive helps so so much.

Still, I can't wait to be through with it!

Lili

fatbuster205 · Post by **fatbuster205** » Mon Jul 16, 2012 3:47 pm

Hi Lili,
I am so sorry you are having a rough time! But I am (selfishly) interested in the comments here as I start prednisolone (40mg) tomorrow morning - I'm in the UK and am assuming that prednisone is the same thing? - or a week and then 30mg for another week before going to budesonide (which I believe is entocort?) 9mg. I have had P before for asthma - 2 x 5 days about three weeks apart - and other than ridiculous energy had no other problems.
However, the B caused muscle cramps and nausea - but my symptoms have been so severe that I am willing to give it another go! I totally agree that you need to have a chat with your doctor and take it from there. I really hope you feel better soon!
Anne

fatbuster205 · Post by **fatbuster205** » Thu Jul 19, 2012 4:27 pm

I started P Tuesday and am exhausted, weepy and f***kd ( possibly because of the impaction causing pain etc but also because I am just p*****d off)!!! but I have had it [P]before for 5 days for asthma and if you keep going you will be OK! I am experiencing the same, currently with shakes etc BUT in 2 days that will all change! See your Doc and make them know but you will hopefully find in another couple of days everything will calm down. I guess just some of us react quickly - unpleasant but better than a more chronic reaction. Personally the jury is still out for me but we all react differently so talk talk talk!!! Let people know that this is a reaction! And don't quit. Listen to your docs but also listen to the amazing people on here ( and I am only beginning to get to know them!!). They (annoyingly- because you know when someone hits the nail on the head and the penny drops...) are telling me what I need to do! i.e. eliminate, go GF etc. BUT I have to do it by the book!! I am working on the book! Introduction and possibly Chapter 1 achieved!!! Why my resistance - I guess because I believe in the NHS and working within rather than combatant is what I need. I guess I am just not confident enough in my research to challenge - that said I have consultants willing to listen as long as it is up to date!! So challenge and give them it ! These guys here know what they are talking about so you are not alone!
Take care Sweet Pea!
Anne

Karen1129 · Post by **Karen1129** » Fri Jul 20, 2012 10:46 am

Gloria wrote:There's no comparison between being on prednisone and being on Entocort. I also had difficulty sleeping when I was on prednisone, but since I had to get up for work, I just endured it. As you know, Entocort doesn't cause any side effects. I hope you can get off the prednisone soon. I don't ever want to take it again.

Gloria

I think to say Endocort has no side effects is inaccurate. All you have to do is read the information given with the prescription.

I had the same side effects from Endocort as I had with Pred, although to a lesser degree.

Endocourt, will supposedly targeting the gut, is also a steroid.

My reaction to Pred was so bad I got off it too. With high blood pressure and glaucoma, I don't take
any of these steroid drugs.

Gloria · Post by **Gloria** » Fri Jul 20, 2012 7:05 pm

Karen,

I re-read my statement the other day and realized that I probably meant to write that Entocort doesn't cause many side effects. I've corrected my post. Thank you for pointing it out.

Some here have had side effects from Entocort, but most have not. Like all medications, it depends on the individual.

Most, however, have reported far fewer problems using Entocort than using prednisone.

Gloria