What to Expect Weaning off Prednisone

[AbbyToo]

Hi there, I found this forum when searching for Prednisone and Crohn's Disease. I was diagnosed with Crohns about 9 months ago and put on 40mg of Prednisone. My doctor has decided that it's time for me to start weaning off the Pred. He's telling me that I'll take 5mg less per 10 days.

I've gained over 15lbs since I've been on the Prednisone and have the dreaded moon face. How soon can I expect this to go away? And is there anything else I can expect to happen that I should be aware of? Thank you all for the advice, this is so great.

 

[ekay03]

Hi Abby Welcome
Are you on any other kind of meds for your crohns besides the pred?

 

[Jazzy182]

Hi Abby,
I know how you feel about putting on the weight and the moonface, I have been on and off pred for the last 3 years but only really got the side effects the last time I was on it. Personally I noticed the moonface dissapeared quite quickly as I decreased the dose and then fully stopped. The rest of the weight took a little bit of effort but not too bad (I know I mainly put it on because I ate so much while i was on pred so when I came off it, my appetite returned to much less). I didn't have any other side effects from weaning off, you just need to make sure you decrease it slowly like your Dr suggested. Good luck! I hope it goes smoothly for you.

 

[Tim]

Hey AbbyToo, I'm coming off a course of prednisone. Was on 50mg daily and been halfing the dose everyweek for last few weeks. I'm currently on 12.5mg and going down to 5-10mg as soon as a fill my script for lower dosage pred tablets at my local pharmacy. The things I've noticed are pretty much text book. I've lost the moon face and weight gain/water retention associated with the pred i had while on the higher dose. Also last week I did experience a few days of severe tiredness when I dropped from 25mg to 12.5mg. Which might have been too quick of a drop in dose, but I'm ok now. Apart from that as far as my appetite goes it has reduced a bit, but not to the levels of like when in a flare. All in all it hasn't been too bad. Sorry if some of it sounds dramatic. Sounds like tapering at 5mg every 10 days will give your adrenal glands plenty of time to wake up slowly (steriods switch them off too a degree in case you didn't know). And I have no doubt you have absolutely nothing to worry about. Best of luck and hope it goes well. Keeps us poseted

 

[Grumbletum]

I'm tapering off my first ever course of Pred too and have had the extreme fatigue too. Relieved now :thumleft: I was worried that it wasn't a good sign, even tho so far, the pain is remaining mainly at bay.

 

[archie]

Hi Abbey, you'll be glad to come off them I was on them for 6 months and wasn't too bad coming off them the main symptom I had when I stopped them completely was a strange sensation of tight itchy muscles that I needed to stretch, really bizarre and lasted about 2 weeks, I put it down to the body readjusting to producing it's on cortizone, I also got a stinking migraine but only the once fortunately... hope it goes smooth, I did also suffer a bit of 'roid rage' but this also quicky disappeared...

 

[rygon]

Im just coming off my 1st time on pred. Feeling quite tired going from 20mg to 15mg (was on 30mg to start with). Noticed I had a headache for about a week as well.

 

[Molechaser]

I'm tapering off prednisone, and I've noticed during the taper that I'm a little more tired than normal and that I have a wicked headache for the first day or two after I drop the dose. But I haven't had this with earlier courses of prednisone, so I wouldn't necessarily expect it in every case.

 

[carrollco]

I'm tapering too. My biggest problem is muscle spams in my chest, neck, and face. Really painful. Also, this last drop brought a major headache that lasted almost a week.

 

[brieyourbest]

I was just diagnosed this April and my doctor is tapering me off of the Prednisone as we speak. I started at 40mg, then I jumped to 30mg. That was really hard for me. I started to get some of the pain back because all of my inflammation isn't gone but my GI wants me off of them because I am gaining too much weight [I was already overweight before them]. The weight issue got so bad that I skyped my sister and she asked me to move the laptop angle. When I moved it and my face still looked huge, she said "It looks like you are stuffing your cheeks, like a chipmunk or something." She had no idea that it was the medicine that did that, so she wasn't trying to be mean or hurtful.

Anyways, today I started tapering down to 25mg... But I have noticed from last week that my energy levels are a little down, the appetite a little down and the moon face is more like a small crescent moon... barely there.

We shall see how this goes!

 

[carrollco]

Welcome Brieyourbest! I'm down to 10mg of Predinisone and feelings so much better. I get to stay here for awhile so I'm thankful I don't have to suffer the side effects of lowering my dosage.

 

[mom2twogr8tkids]

Everyone's body is different and reacts differently to the meds. I have heard of people that it took them a few months to get rid of the weight. However when I was on it, it took me a along time to get the weight off but I gained alot bc I had been in the hospital and was on several meds and left on a walker so therefore I had some set backs that took me awhile to get things in order. If your able to exercise that will probably help you out a great deal.

 

[epconroy]

Well I started on Prednisole about 6 weeks ago and have dropped 5mg every week since. I have just started to feel twinges of pain now but saw my consultant last week and told me to expect that. I dont think Ive put on weight though i do have puffiness in the face. Trying to watch what Im eating too and not overindulge. Also day #1 off the cigarettes today.......yay

 

[carrollco]

There were times I thought of my head as a basketball. Round, round, round with pufferfish cheeks. Eck.

 

[Lala12]

Hi everyone, I'm new on here. I'm just going to start tapering off the pred and am feeling a bit anxious. Dr warned me I may feel awful with the withdrawal. I've been on pred since April 30mg daily. On one hand looking forward to hopefully returning back to me, no moon face, lose weight and grow hair back etc, on the other worried about side effects of coming off, what if things don't change. After reading some posts it has made feel a little less anxious about things. Thank you, hope everyone is as well as can be

 

[Lisa0330]

Hi I want to apologize because I do not have crohns. But I'm a cancer and chemo survivor and was put on prednisone two years ago to help mask my neuropathy symptoms( burning hands and feet from the inner depths of hell kind of burn). I'm just desperate for info and you guys have it. I'm only on 10 mg but have been unsuccessful to taper down till last week. My oncologists way was to stop writing my pred I HAD to have. Anyway, I'm sick of the weight, sick of the moon face and sick of my aching arms so last week I drew every ounce of strength I had and started tapering. I went from 10 to 7.5 to now 3.5
This morning I feel like someone's been punching my legs black and blue. Aching up and down my spine and arms.
I've had fatigue since I started tapering but I will take that. Am I going crazy?? Will my adrenal glands EVER work again? I know only ten mg shouldn't be a big deal, but it has been. I'm pretty tough but dang something's gotta give!! HELP!! :stinks: