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Piano Girl on Prednisone

Can anyone enlighten me on their experience while on Prednisone? I need help with side effects and how you are feeling while on it? I'm on the taper down now and am having all kinds of weird side effects. Your help is very much appreciated.

Piano Girl
 
Can anyone enlighten me on their experience while on Prednisone? I need help with side effects and how you are feeling while on it? I'm on the taper down now and am having all kinds of weird side effects. Your help is very much appreciated.

Piano Girl
There is a Prednisone subgroup/ forum that might be helpful for you to check out, but I'll be happy to run down some of the side effects I've been living with for the past six months (I am nearly tapered off at this point).

On the plus side, my abdominal cramping, pain, and diarrhea basically subsided when on Pred. It took me from repeated bowel obstructions and hospital visits to none (well, none related to my bowel).

On the downside, the major things that come to mind are bloating, moon face, and buffalo hump. Weight gain, excess sweating, fluid retention, insomnia, and food tastes...weird. Metallic. Finally, and it turned out most serious, is reduced autoimmune capability, which (combined with the same effects from remicade) recently landed me in the hospital with a serious bout of pneumonia.

Pred has been a double-edged sword for me. It definitely got my CD under control, but the side effects have been brutal, to put it mildly.
 

nogutsnoglory

Moderator
I was on prednisone for a long time and had a pretty high dose. I gained weight, was extremely hungry, had acne, and the moon face. The damage that was done to my bones was lasting and I now have full-blown osteoporosis.

My feelings are the sooner you can taper off the medication completely the better.
 
I have had to take pred three times. Each was a 4=3=2=1 so on for a month at a time. Each time the side effects got a little worst. The last time I was on it for seven weeks and I had Afib for the first time in my like. It worked twice like a charm, but that third time was scary . I won't take it again. The day after I stopped the pred the heart issue was gone.
 
The main side effect that I remember being troublesome for me was feeling very anxious and amped up. Never done any kind of speed drugs but that is what I imagine it would feel like. Very unsettling.
 
Thanks for all your feedback. I had a pretty severe manic episode Wednesday night and it was really scary. I was told that it was textbook Prednisone side affects. Also, I am having trouble falling asleep even though I am on a med to help with sleep. Any insight on what you are taking or do to help you fall asleep?
 
Basically I'm echoing what everyone has mentioned. Moon face, trouble sleeping, weight gain, acne, sweating, constant appetite. Good drug to get everything under control, bad for long time use. I've been on it for almost 7 months now and will be off of it completely in a week's time. This time around I've only experienced trouble sleeping. Still, I can't wait to get off this crap! The sooner you're off of it the better.
 
Thanks Casey C. I am on the taper down and almost ready to move from 3 to 2. Thanks for your feedback. I'm hopeful it's helping, but I'm not really noticing if it is yet???
 
Are you on anything else besides the prednisone? Most people experience their symptoms returning as they start getting down to a low dose. Hopefully you won't experience that. Btw I love your picture. My husband plays the piano as well and I love listening to people play.
 
Casey, I am on a lot of other things too! Entocort, Nexium, Celexa, Linzess, Seroquel for sleep and Prednisone. Finishing my last day of 3 tomorrow. They tried Xifaxin and it made me really manic and a mess and Then tried Cymbalta and they both sent me spiraling into contemplating ending it all. UGH! The taper down day seems to be the worst for me so far. So we will soon see. I hope and pray I don't have to be on Pred. for 7 months. YES - I love playing the piano and teaching m students. It is a bright light in a tough battle with Crohn's. Thanks for your insight:)
 
Thanks Casey C. I am on the taper down and almost ready to move from 3 to 2. Thanks for your feedback. I'm hopeful it's helping, but I'm not really noticing if it is yet???
I've been on a very long, slow taper from 60mg per day, reducing by 5mg per day every five days.

I just dropped tom5mg per day yesterday. Should be all the way off in less than a week. I haven't noticed much change yet other than maybe sleeping a little better. The sweats are also gone, swelling is still present. Appetite is lessened, so I guess it's fair to say some of the side effects have disappeared as I tapered, others not yet.

You asked about sleeping - I honestly have just dealt with changed sleep patterns and waking up at 3AM most days. For a while I would be simp,y exhausted by 8:00 at night and crash by 9:00, then sleep until 2 or 3 AM at which point I was awake, effectively manic, and would start working on client stuff for a few hours. I'd then fall asleep around 5 or 6 and sleep for another hour or two.

I was going to say that's improved but my sleep schedule is once again weird due to some other medication they've got me on to treat a bout of pneumonia. It also tends to give one insomnia. It's like the docs are conspiring to keep me awake :)

Good luck with your taper. I've been on steroids for about five or six months now and I can't wait to be done with them, hopefully for good this time.
 
Prednisone did work wonders for my disease, but I couldn't cope with the side effects - at first. All the side effects were cumulative for me - the longer I was on it, the more side effects appeared and the more severe they became.

At first I just felt high and had loads more energy. But over time this energy began to include insomnia and a terrible restlessness where I couldn't concentrate on anything and was so bored because I was awake for endless hours where nothing could hold my attention.

The miracle for me was when my doctor prescribed me Amitriptyline. She prescribed it for the insomnia - which completely disappeared and I slept better than ever before - but it seemed to completely counter the restlessness as well, and in emotional terms I felt so much better.

Prednisone also gave me some facial hair, which, once I'd got the moods and sleeping sorted, was the worst thing (though not terrible). Against all my expectations, I did not feel hunger and did not gain weight, though my face puffed up a bit. My muscles wasted - this came later into my prednisone course - and I was physically very weak, but this didn't bother me too much. I got a bad tremor. My white blood counts were always off (I think too high) when I had blood tests done. I'm sure there were other things. It was odd how at first I felt exactly the same on pred and then how many things started steadily changing.

Everything quickly returned to as it had been after I'd tapered. I stayed on the Amitriptyline because until I took it for insomnia, I hadn't realised how much I needed it as an anti-depressant. I'm actually not sure I am less depressed taking it, but it definitely does something for the better to my emotional state that I can't quite define, but I'm very pleased prednisone led me to it.
 
pianogirl - you should go to your doctor straight away if you've had a manic episode or any similar severe mental side effects. Some people just can't tolerate prednisone for this reason and it's safer for them to find another treatment for Crohn's if at all possible. You might need your doctor to taper you off it fairly quickly and try to find an alternative, as these kinds of mental side effects of pred can sometimes make it a bad idea to continue.
 
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