Having that heart racing or pounding feeling..

meganmila · May 4, 2013

I know this has probably been asked plenty of times but I'm on 40 mgs of Peds and won't know how to taper until I go to the doc which hopefully this week. I have been having the anxious heart pounding feeling and trouble sleeping. Like my eyes are tired right now but my chest is not. My mind is not connecting either. But, I got some OTC sleep meds....I'm wondering if that will work? Also, I just have to wait it out I guess? I hate not being able to relax tho....I guess I'm just just gonna have to wait, which I don't do well.

This post to me is all jubbled. Well my mind is so sorry for asking the same questions or anything.

I just want to know if there is anything to do about it..

Also, what would happen if you do stop taking it entirely at this dosage? I've taken it before but I don't remember feeling like this.

nogutsnoglory · May 4, 2013

I'm sorry you are feeling so horrible. Please don't abruptly stop as that is dangerous and you will feel so much worse. You need to be on a taper schedule.

Can you see the doctor earlier, tell them your side effects are really bad. Maybe they can begin a tapering plan over the phone.

Michelle89 · May 4, 2013

The first time I took prednisone I actually loved it! I felt like super woman and didn't remember the side effects I have this time around. I am SO bloated, and I also have the heart pounding and a huge face and short tempered! I am now at 25mg (and tapering) and all side effects are getting much better. When I was at 40mg I got my entire home office reorganized while everyone else as sleeping! It came in handy until my projects were done and the no sleep caught up with me, lol. I'm making fun but totally understand how frustrating it is. I got down to 5mg before and flared again big time. They put me back at 40mg because of it....I literally cried because I didn't want to go back to the side effects of 40mg. Hopefully you'll begin tapering and it will be over soon!

SarahD · May 5, 2013

Anxiousness and a pounding heart are common side effects of pred unfortunately. They usually get better as you reduce the dose, so if they're bothering you I agree with nogutsnoglory about calling your doctor to see if you can start tapering early. You could also ask about switching to Entocort instead of pred, it's not suitable for everyone but if you can take it then it's supposed to have fewer side effects than pred does.

It might also be worth you having a blood test to check that your potassium levels are ok, as pred can cause some people to not retain potassium, which in turn can cause your heart to pound.

sickinlk · May 5, 2013

yep I remember that feeling. I was like a mad zombie out of 28 days later ravaging the kitchen for sugar!!!! like every1 said it'll calm down as the weeks go on. ru taking it first thing?
ju

UnXmas · May 5, 2013

Hi, I hated the restlessness and insomnia of prednisone. I tried over-the-counter sleep meds with no success at all. I ended up going to my GP, who prescribed amitriptyline for both the insomnia and anxiety. Then I could sleep and feel calm again. I'm still on it now even though I'm not on prednisone, because I sleep and feel so much better that my doctor thought it was a good idea to continue it.

What I would say though is that the medication that worked for me probably won't work for everyone. If you don't have any luck with the over-the-counter sleep meds, and if you still have to stay on prednisone for a while, it might be worth talking to your doctor about it, because they will be able to provide you with stronger meds. It might take a while of trial and error to find something that helps you.

Also, what would happen if you do stop taking it entirely at this dosage? I've taken it before but I don't remember feeling like this.

It could make you feel very ill if you suddenly stop prednisone, especially at the high dose you're on now. I've read that it can even be life threatening if you stop taking it suddenly, as while you're taking it it can cause your adrenal glands to stop working, and if you don't taper off gradually to give them time to start working again it can be serious. I don't think this happens very often, but stopping it may well make you feel worse and you probably shouldn't risk it.

meganmila · May 5, 2013

Thank you everyone! Maybe I'll just get used to this feeling? Hopefully I get to taper down 10 mg instead of 5 cause each pill is 20 now that I take.

bigtruck · May 5, 2013

I would taper very slowly, but see what your doc says.

meganmila · May 9, 2013

Well, I have to take the 40 mg for another week then going to 30 for 2 weeks then 20 and 10. Which means a whole other 2 months. I hope it gets better once I go down. Also have an option of surgery. I do sometimes get stomach pain at night. I'm wondering though, if you are taking preds and they do surgery wouldn't that be kind of dangerous? I dunno, I dunno what is going to happen. We'll see.

Marcie496 · May 10, 2013

I had a horrible time on the pred. I basically had a phsychotic break. Had every side effect plus. I didn't sleep for almost 3 months and paced around the house either manic or balling. I had to go off work and was taking zanex to help calm me down. I was out of my mind.

Hang in there. Talk with your doctor and be a strong advocate for yourself.

tonimacaroni · May 10, 2013

Hey I just came on here to search this very symptom! I'm already tapering, down to 10 mg and just noticed the anxious tight-chested feeling today... with some heart pounding. Glad to know it gets better! It's very light and I haven't had any insomnia issues so far (just very AWAKE when my alarm goes off which is nice)

I feel you with the chest feelings though... yuck.

Johnnysmom · May 10, 2013

My son had the same thing. Pred can make you low on Potassium so we started giving him extra, along with magnesium. Drinking a ton of water helped too, dehydration made the heart racing worse.

We ended up getting him checked out by a cardiologist. Everything checked out ok and it got better once he was tapered down to about 20mg. It caused my son a lot of anxiety when the racing heart symptoms started but it helped him to know that it was just part of the medication.

Hope you are off pred and feeling well soon. (((Hugs))))

meganmila · May 11, 2013

Well, my anxiety comes and goes. I can feel the heart thing all the time but not being so bothered by it then anxious feelings comes. Ugh! I hate it! At least I have sleeping pills heh. I dunno if going to 30 mg will help and stomach still has pains sometimes. I'm up and and down. Thanks for the support. I have been on this med before just been awhile. Good I'm not alone.

alex_chris · May 12, 2013

meganmila said:
Well, I have to take the 40 mg for another week then going to 30 for 2 weeks then 20 and 10. Which means a whole other 2 months. I hope it gets better once I go down. Also have an option of surgery. I do sometimes get stomach pain at night. I'm wondering though, if you are taking preds and they do surgery wouldn't that be kind of dangerous? I dunno, I dunno what is going to happen. We'll see.

That's a very strange downwards tapering schedule. My doc actually let me decide the last time I was on pred (and rightly so) when and how I should taper off pred, he only says the smoother (smaller steps but more often) the transition the better. So, I was going from 40mg to 35mg staying there 5 days, to 30mg staying 5 days etc. until 10mg and tapered off in 5 days intervals to 7.5mg, 5mg, 2.5mg and nothing. If you get Crohn's symptoms in between, you go one notch back and stay therefor a week or until things get better.

As to surgery, why are you or your doc considering surgery and at which part. You can of course go for surgery no matter what meds you are on, but in general if it is elective surgery it's normally the last resort, so the question is why is it considered?

meganmila · May 12, 2013

You're worrying me heh. I've done this taper before. So you're saying get off of it slower? I dunno if I can handle that. These side effects are too much. I'm confused about the surgery too. I need to speak more with the docs.

meganmila · May 13, 2013

I'm all worried haha. I have been reading all over the place and is 2 months a short period of time to take this stuff? I've heard you have to taper slowly, then i read somewhere someone just took it for 14 days, that seems to quick? I'm so confused.

I hate these side effects and I'm scared once I taper it will be worse. I'm gonna go cry.

alex_chris · May 14, 2013

2 months on pred is pretty standard. Of course no pred at all would be best, but if you want to control a bad flare corticosteroids are still the best thing.

In my post above I just meant tapering off pred in smaller steps but in shorter interval is probably better, as this is a smoother transition for your body.

sickinlk · May 14, 2013

meganmila said:
I'm all worried haha. I have been reading all over the place and is 2 months a short period of time to take this stuff? I've heard you have to taper slowly, then i read somewhere someone just took it for 14 days, that seems to quick? I'm so confused.

I hate these side effects and I'm scared once I taper it will be worse. I'm gonna go cry.

no 2 months isn't a short time. most docs start out prescribing a 2 months course. week 1=8 tablets/per day, week 2=7 tablets/day, week 3=6 tablets/day etc.....until you are down to 1 tablet a day and then nothing.
if while you are tapering you experience symptoms of IBD, your doc may tell you to stay on a higher dose for longer and taper slower by 10mg every 2 weeks. the main thing is keep in contact with your team if things don't improve.
the side effects will NOT get worse as you taper. I can reassure you they will get better.
ju

TwinkleToes · May 23, 2013

This post sums up the last month of my life. I was re-diagnosed exactly one month ago with Moderate/Severe Crohn's. I wasn't on any meds, and my doctor said (based on my colonoscopy and endoscopy) that I have been dealing with some bad inflammation for a while.

So, I was initially put on 40mg of prednisone. Almost immediately I wasn't sleeping, felt like I was on speed, felt like Superwoman a good portion of the time, and have gained a total 12lbs while eating practically everything in sight. I am also on Pentasa, but haven't had any issues with it whatsoever.

I currently work out 4 days a week because it helps me feel better, and helps me feel less guilty that I am now a total fat kid. I am currently tapering and today am at 25mg of Prednisone. I started out at 40mg.

Honestly, while the drug makes me feel good, and I feel "normal" for the first time in a year, i'm not a fan of the weight gain, mood swings, insomnia, and acne breakouts that I've been dealing with. I'm hoping that once i'm tapered off completely that i'll drop some of the weight I've gained, and get some sleep.

As for the sleeping pills, my GI told me that sleeping pills aren't good for people with Crohn's. It's actually said that Melatonin and sleeping pills can CAUSE flares, which is why I haven't taken any of them yet. I was trying to take a benadryl before bed to help me sleep, but no matter what I wake up between 3 and 4:45am (I normally try to sleep until 6:30). It's like I just can't win.

sickinlk · May 23, 2013

hi twinkletoes,
welcome to the forum.
what time of the day ru taking the pred.
the good thing is they are working so hopefully you'll only be on them for a short while. they can be great for treating flares but not long term.
ju

UnXmas · May 23, 2013

TwinkleToes said:
This post sums up the last month of my life. I was re-diagnosed exactly one month ago with Moderate/Severe Crohn's. I wasn't on any meds, and my doctor said (based on my colonoscopy and endoscopy) that I have been dealing with some bad inflammation for a while.

So, I was initially put on 40mg of prednisone. Almost immediately I wasn't sleeping, felt like I was on speed, felt like Superwoman a good portion of the time, and have gained a total 12lbs while eating practically everything in sight. I am also on Pentasa, but haven't had any issues with it whatsoever.

I currently work out 4 days a week because it helps me feel better, and helps me feel less guilty that I am now a total fat kid. I am currently tapering and today am at 25mg of Prednisone. I started out at 40mg.

Honestly, while the drug makes me feel good, and I feel "normal" for the first time in a year, i'm not a fan of the weight gain, mood swings, insomnia, and acne breakouts that I've been dealing with. I'm hoping that once i'm tapered off completely that i'll drop some of the weight I've gained, and get some sleep.

As for the sleeping pills, my GI told me that sleeping pills aren't good for people with Crohn's. It's actually said that Melatonin and sleeping pills can CAUSE flares, which is why I haven't taken any of them yet. I was trying to take a benadryl before bed to help me sleep, but no matter what I wake up between 3 and 4:45am (I normally try to sleep until 6:30). It's like I just can't win.

Hi, sorry you're having such a miserable time on prednisone. At least the side effects you mention aren't permanent, so you will return to normal when you've been off it a while, though I know how hard it is waiting for the time you can be free of it.

I'd never heard that about sleeping meds and Crohn's. They didn't give me any Crohn's problems that I noticed, though none of the over-the-counter ones worked when I was on prednisone, and I had to get a stronger medication on prescription from my doctor.

TwinkleToes · May 23, 2013

sickinlk said:
hi twinkletoes,
welcome to the forum.
what time of the day ru taking the pred.
the good thing is they are working so hopefully you'll only be on them for a short while. they can be great for treating flares but not long term.
ju

I take it first thing in the morning, right after I eat breakfast. Today is my first dose of 25mg, so we'll see how it goes.

UnXMas - Honestly, I'm just weary of any sleeping meds. Melatonin, for example, just isn't good for you long term. When I spoke with my GI she really advised against sleeping meds. My issue is that I fall asleep just fine, but I wake up between 3 and 4:45 (this morning at 2:45am

) and can't fall back asleep. I could take something (benadryl, motrin PM) but I don't, because I don't want to be in a medicine fog just to get an extra 3-4 hours of sleep. Although, after last night i'm at the point where I would try almost anything just to get a solid night's sleep.

But, while the side effects are horrible, like I said, i'm trying to see the bright side of it all. I find that keeping positive and finding the "silver lining" helps me deal with all of it a little better. Life's hard enough as it is, I don't need to make it any harder on myself.

UnXmas · May 23, 2013

TwinkleToes said:
I take it first thing in the morning, right after I eat breakfast. Today is my first dose of 25mg, so we'll see how it goes.

UnXMas - Honestly, I'm just weary of any sleeping meds. Melatonin, for example, just isn't good for you long term. When I spoke with my GI she really advised against sleeping meds. My issue is that I fall asleep just fine, but I wake up between 3 and 4:45 (this morning at 2:45am ) and can't fall back asleep. I could take something (benadryl, motrin PM) but I don't, because I don't want to be in a medicine fog just to get an extra 3-4 hours of sleep. Although, after last night i'm at the point where I would try almost anything just to get a solid night's sleep.

But, while the side effects are horrible, like I said, i'm trying to see the bright side of it all. I find that keeping positive and finding the "silver lining" helps me deal with all of it a little better. Life's hard enough as it is, I don't need to make it any harder on myself.

What worked for me is amitriptyline. Its effects last a long time, so it not only helps you fall asleep, but also stops you waking up during the night or early in the morning. For the same reason though, it can also make you feel drowsy the next day. It has a huge number of side effects, so if you're wary of meds, it might not be something you want to try, but I do so well on it. It's not psychologically addictive like some other sleeping pills.

sickinlk · May 23, 2013

twinkle toes it will improve as you taper. I remember waking up too on pred. I just had to get up and watch tv, read or google for a while till I felt tired again. I usually had toast and tea as well. lol..not good. I think the worst thing to do when I cant sleep is lay in bed. better occupying the mind for a while.
ju

Having that heart racing or pounding feeling..

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