Extreme fatigue and weird heart rate

[Rachel]

Hi,

I have been tapering off of prednisone for the last few weeks. I am extemely tired. I just want to collapse at work and close my eyes. I feel dizzy and shaky. The worst part is my heart rate is up and the rhythm seems off. I can be sitting at my desk or on the couch doing nothing, and I feel my heart pounding and beating funny. It's really bothersome and makes me feel very anxious. Is this normal??

 

[Jennifer]

Might be tapering too fast for your body. Everyone is different so some need to taper a lot slower. Prednisone can come in 5mg and 1mg tabs (you can also break the 5mg in half). I'd mention it to your GI and ask if you can get a script for at least 5mg so you can taper slower and see if that helps at all. Gotta watch out for Adrenal Insufficiency/Crisis when coming off that stuff.

 

[Panda33]

I am tapering too. I am currently down to 5 pills (25mg). Tomorrow is down to 4. Those symptoms you described especially the weird heart beats/pounding happening out of nowhere happened in the beginning when I was on 8 pills. Then slowly went away, but are starting to return again. It's weird I know!! I a. Also extremely tired. After even just 4 hours of work I feel like I want to collapse. I get super weak. Legs get shaky and give out. Hands get shaky too.
I had no idea about this adrenal insufficiency crisis thing. Eeeeek kinda scary.

 

[Thermo]

Crabby is correct if it's very noticeable you are tapering too quickly. Basically if you can't get out of bed everyday and it's hard to hold your arms above your head and it feels like someone is holding you down you need to call your doctor. It is possible to taper quickly I have done it but it's very dangerous and causes a whole bunch of complications after, so if you can go slower it would be better. I am tapering again myself and it's not fun but your goal is getting off and making sure your body starts producing again.

 

[Rachel]

Well, the heart rate thing has gotten a little better. My symtoms seem to get worse as the day goes on, and I feel great right when I wake up in the morning. Then I take my pills when I get to work and by the afternoon, I feel like a a zombie.

I actually haven't been on the prednisone that long this time. Since I am supposed to be starting Cimzia soon, my doctor just gave me like a month schedule of being on prednisone. So, I started for 3 days at 40 mg, then a week of 20 mg, another week of 15 mg, then starting tomorrow I go down to 10 mg. So, maybe it was a shock to my system to have this in my body starting at 40 then tapering off so quickly. I don't feel like it is helping too much....I am still having crohn's symptoms every other day. But I guess it is better than 4 hours of diarrhea every day!

Does this drug make anyone feel depressed? Sometimes I think its the fact that I have absolutely no energy to even smile that it makes me feel depressed. I'm usually a very smiley person. lol

 

[Rachel]

Panda33: What do you do as a job? Do you find it hard to make it through a work day??

 

[Panda33]

I have 2 jobs. 1 is in group homes, so it can be physically demanding. My other job is as a social worker/therapist at a residential facility. This one is less physically demanding as I spend a lot of time sitting in counseling sessions with my clients.
I do find it hard to make it through a day. Even at my therapy job, I find myself feeling exhausted by the end. But also simply tending to my children and doing housework wiped me out too. I think it also has to do with not sleeping well. I take zoplickne most nights to help, but that doesn't always work. I'm hoping in time I continue to get stronger and this fatigue will be a distant memory.

 

[Panda33]

*zoplicone

 

[Jennifer]

Does this drug make anyone feel depressed? Sometimes I think its the fact that I have absolutely no energy to even smile that it makes me feel depressed. I'm usually a very smiley person. lol

Depression and mood swings are very common on Prednisone. Last time I took it long term I tried to kill myself, so ya.

If you've taken it longer than 10 days (I was told 10 but some say 7 days) than you need to taper. The amount of time it takes depends on the person.

 

[JackC]

Yeah Rachel, prednisone has robbed me of my smile too. It sort of makes me feel cold and heartless. I hate it and I'm trying to taper off it, from 10mg to 5 right now. I did 5mg for 2 days and wound up rushing to the toilet losing a lot of blood so I jumped back up to 10mg. This drug works to stop the bleeding but it is a scary and hardcore drug. I plan on trying Medical Cannabis which many IBD patients have reported great success with, with relatively few and minor side effects.

 

[Rachel]

It's pretty much turned me into a grumbling bitch in just a few short weeks. Very emotional too.

 

[Hobbes650]

Might be tapering too fast for your body. Everyone is different so some need to taper a lot slower. Prednisone can come in 5mg and 1mg tabs (you can also break the 5mg in half). I'd mention it to your GI and ask if you can get a script for at least 5mg so you can taper slower and see if that helps at all. Gotta watch out for Adrenal Insufficiency/Crisis when coming off that stuff.

Yep, definitely sounds like tapering too fast. I always have trouble coming down off Prednisone. Two months ago I started tapering while on Entocort and my doc tapered me down from 40mg daily to 20mg. After one day I had fever and headache. I have been down that road before, so I simply took another 10mg to adjusted the taper and then kept back to his schedule. Felt fine the next day. Told my doc and he was fine with that. I'm NOT encouraging any self meds but if you call your doctor and he/she does not get back to you and you're thinking of going to the hospital, just go back to the last level until your doctor gets back to you. Don't try to tough it out thinking your body will get used the lower level over time. As Crabby mentioned, adrenal problems can happen if jumping off Pred too quickly.

I'm not sure there is a thing as a "script" per say because some are are more sensitive to Pred than others and each doctor seems to have their own preferred schedule. After I had my surgery in 1987 the hospital had me on the "normal" taper and after one day I was orthostatic. Even when I simply sat up in bed, I'd get very dizzy, my blood pressure would drop and there was no way I was going to stand up without passing out. The hospital brought in and endocrinologist who adjusted my taper mores slowly and that worked fine, but it added another week of bed rest which sucked.

 

[Thermo]

From my personal experience the more times you use the steroids the harder it is as you get off them. I cant even count the number of steroid treatments I have had over 20+ years but now when I try and get off them even after a month I get every single side effect really bad. What I tell myself every time is the quicker I can get off them the quicker I will feel better. If your Crohns symptoms are under control and you are facing only the steroid withdraw symptoms just know that its not fun and you will most likely feel terrible. As long as you can wake up and not have trouble getting out of bed or shampooing your hair just keep your thoughts positive and know that after a few weeks you will feel much better. As a reference I was on steroids for 10 months once then tapered off in 3 weeks to a host of massive side effects and one of the worst months of my life but I was off them. Each person is different but the only time you will have a problem is when tapering below 10mg that is when you should watch things.

 

[karj]

I am tapering down 5mg every five days but my pharmacist said that when i reach 10 or 5mg to tell the doctor to go down slower, i am on 35mg now.

 

[Panda33]

I am tapering down 5mg every five days but my pharmacist said that when i reach 10 or 5mg to tell the doctor to go down slower, i am on 35mg now.

Yeah for me I am down to 20mg (4tabs). But once I reach 2 tabs (10mg) then my tapering gets slower...1.5 tabs, 1 tab, 1/2tab, then stop.
This is my first time on prednisone so I am hoping this is a good tapering pace. Eeeeeek