Breakdown on Prednisolone

[jonnyb]

Hi guys,

I've come off Prednisolone after 7 days on 40mg and I'm wondering if anyone else has done this without tapering?
All week my anxiety had been building and I hadn't slept properly for days. On Thursday afternoon I became tearful and then I started having suicidal thoughts. By Thursday evening I was in hysterics and I wouldn't let anyone come near me. I was curled up in a corner of my room screaming and shouting.
Thankfully my family were there and eventually managed to calm me down. They wanted me to go to A&E but I was terrified I'd be sectioned so we called the doctor instead but (after waiting 3 hours) he didn't seem to have much of a clue and just said he wasn't sure what was best as he didn't know much about Pred.
I stayed up all night and saw my doc first thing the next morning. My GI said to come off Pred right away and my doc gave me some zopiclone to help me sleep.
Yesterday I was really tearful again and today I'm not as much but still really anxious and unsettled. I can't sit still and just want to pace. My mind is racing. How long do you think this will take to pass and for my sleep to improve? I slept a bit better on the zopiclone last night but still feel exhausted.
I'm seeing my GI on Monday and we'll assess what to do next then.
Has anyone else had a similar experience on Prednisolone?

I don't want to put anyone off using Pred as it could make a really positive difference to them but anyone with a history of mental illness should really think carefully about it. I've had schizophrenia, depression and anxiety and been on anti-psychotic meds up until last year so maybe it wasn't so sensible to start taking this.

Thanks

Jonny x

 

[Lydia]

Pred makes me really mental too. I feel like jumping out of my skin, and I pace back and forth for hours. I take 2-3 other drugs just to be able to deal with the side effects. Now that I am tapering I feel really sad all the time. Its been a long 10 weeks.

 

[Del]

It should clear your system pretty quickly.
How quickly your own body returns to normal is dependent on how long you were on them in the first place among other things.
http://drpullen.com/prednisonetaper
Take care.

 

[Grumbletum]

That must have been awful for you, and I hope you get over it soon. I felt pretty manic on it when I started, but not as extreme as you've been through.
I wonder what they will put you on instead? Take care and let us know how you get on. X

 

[Akcat]

That sounds terrible! I hope everything calms down soon. About two weeks ago I started prednisone. I did 3 days at 40 mg. To start with, I was overly happy and had lots of energy, but could not focus it. I was bouncing off the walls. I then started to get really angry and depressed for no reason. Days 4 and 5 I went to 20 mg. Happiness went away and anger and depression got worse. I was pretty miserable , so I stopped after day 5 and it only took about 2 days for me to feel like myself again. Hopefully you will get back to normal quickly too!

 

[25times]

I know all too well about the mental side effects of prednisone (same as prednisolone, for the most part.) My GI seems to want to push these side effects away, and only deal with the physical, bowel issues of crohns. Which doesn't help me much, since I have alot of extraintestinal manifestations with my crohns.
When I was on a higher dose (40mgs-10mgs) I had alot of anxiety. "alot" is an understatement, actually. I would stay up for days just sitting there, worrying. It got very bad. I was prescribed ativan, seroquel, valium.. None of them worked. Eventually, it got to the point where I thought I would kill myself if I didn't get off that crap. I tapered down from 30mgs to 15mgs overnight. I got really sick and weepy and ridiculous. The next week I saw my GI, and I couldn't even string a sentence together. Every time I tried to talk I would start crying. And not regular crying, either. That panicky, can't breath kind of crying. It was awful. I just wanted off it. I had horrible moon face, tons of weight gain, pimples all over my chest and shoulders, body hair like you wouldn't believe, and such bad anxiety that I wanted to off myself. Now I'm down to 2.5mgs, and I haven't experienced the mental side effects in almost 2 weeks. The facial swelling is still there, and I haven't lost as much weight as I would like, but my body hair is almost back to normal, my appetite is back to normal, and I haven't been anxious or had anymore pannic attacks. Once you get down to about 10mgs, you should stop experiencing the mental side effects. You could ask your dr to prescribe an antipsychotic at a low dose, or a stronger sleeping pill. Prednisone effects everyone differently, and drs seem to think that the mental side effects are relatively rare. They don't know much about it. My pharmacist didn't even know that prednisone could cause anxiety and stuff like that. Just remember that it's not forever and once you get down to a low dose, it will pretty much stop.

 

[jonnyb]

Thanks for your responses. I'm still feeling exhausted and anxious, but hopeful that things will get easier in the coming days.
I was talking to someone who had a similar experience on Pred and she now has her Pred through an IV? I guess that could minimize the side-effects perhaps? I don't know much about it?
I'm sorry that so many people have been suffering with such extreme side-effects. The worst thing for me was that it felt like a ride you couldn't get off. On Thursday night when I was crying and screaming, I wanted to escape out my body and mind and just rest but there was no stopping the tears and the panic. I felt completely trapped.

Lydia I hope your mood starts improving asap. I'm really sorry for what you've been through.

Akat I'm glad you're feeling back to normal now. That makes me optimistic the same will happen to me.

Samantha it sounds like you've been through a really rough ride too. It seems like you're through the worst of it and hopefully it won't be long for the facial swelling and weight to return to normal too. I had that panicky crying and when I saw my doc on Friday couldn't string a sentence together either or look at her. I never want to go back to that dark place. Be well.

Thanks to everyone x

 

[tiloah]

Wow that's quite a reaction. I'm sorry you had to go through that, but I'm glad they got you off of it. I hope going forward you get on a treatment regimen that works for you. Thanks for sharing your experience with us.

 

[25times]

Yeah, I think one of the worst parts is the fact that you can't just stop taking it. With other medications (for the most part,) if you have a bad side effect, you just don't take it anymore. But with prednisone, you have to wean off it. You know what it's doing to you, and that it would go away if you just stopped taking them. But you can't.

 

[Nemesia]

I'm with you!

I'm in the same boat. I'm not quite myself since I'm back on pred. It's pretty dark in my mind - it kind of goes up and down all the time. I have mild panic attacks and I'm sad pretty much all the time.

Okay, I'm pissed that my Crohn flared up again but other than that, life is good... I should be relatively happy.

I blame pred! But I can't stop taking them. So I wonder what we should do to counterattack these thoughts or feelings. Exercising? Journaling?...

 

[Gwen pippy]

Hey Jonny
I'm so sorry you had to go through that, it sounds rough. I have been on and off pred for over 20 years. When I first start taking them I was a young teenager and any side effects that weren't stomach related were pushed under the medical carpet as they didn't know or just weren't interested. I don't get many effects now as my body has become so used to them but I do have major issues such as anxiety and bad panic attacks when I'm in a flare and just before I start pred.
Some nice doc's and GI's will go out of there way to tell me when and how to take certain meds to reduce any possible mental effects, which is such a difference to the put up and shut up approach of days past.
Have they mentioned any alternatives? Are you in a bad flare right now?

I hope you are back on your feet now.
Gwen xxx

 

[jonnyb]

Nemesia..i'm sorry to read you're in a dark place a lot of the time. Things like exercising and journaling are useful when you're in that place. When I was on pred, I found myself getting frustrated about the smallest things. One day I was looking at a photo frame on my shelf and I wasn't happy with its position so I kept moving it to different places but each time got more and more distressed about it so eventually moved out of the room and went to a different room to relax and focus on my breathing. It didn't look so bad when I came in to the room after that.
I'd practice some form of relaxation for at least 30 minutes every day if you can. Yoga or meditation is really beneficial if you're constantly feeling pretty low.
Try and stay positive, I know it's incredibly hard. Hope things improve for you asap.

Gwen, thanks for your message. I guess a lot has changed in 20 years in terms of perceptions and openness about mental health fortunately. I wouldn't say i'm in a really bad flare right now, but it does need some form of medication. I'm losing too much weight. I had a repeat colonoscopy this week and when we get the results back from that we're going to discuss what course of treatment to try next. In terms of my mental health, I'm feeling better now that I'm off the pred. Hope that you're doing OK Gwen x

 

[Gwen pippy]

Did they say when the results are back, the sooner this flare is reined in then the quicker you can start to put that weight back. I have struggled to get my weight back up for months now, I don't have a scales in my home as I would probably be weighing myself everyday and then getting disappointed that I hadn't put any weight on, it's like my body have a limit and when I reach a certain weight it starts to drop off again, much to the annoyance of my sister who only has to look at a chocolate bar and she gains stones.
I'm glad that the effect the pred had on your mental health has passed, you've enough to be dealing with.
I'm a bit nervous at the moment, has stopped Asacolon and I am trying Mezavant on the suggestion of my GI, belly a bit dodgy and I feel like going to far away from home is not a good idea right now but I'm my own worst enemy some days and it could be just something I have to get through.
Let me know how the results go and what they suggest, don't let them pass you off with any ole meds, you want to that flare a thing of the past.
Good Luck
Gwen xxx

 

[Nemesia]

Hi JonnyB,

Thanks for the good advices. Actually, I just starting a journal last week. First thing I wrote was a nasty letter to my Crohn... - Dear Crohn, ....

I told it how much i dislike it and oh, I didnt brace my words. Worst letter i wrote but,
oh god, i felt better after.

I hope you are feeling better!

 

[JohnnyRottenAppleseed]

One of the label warnings for Prednisone is psychosis. I loved the weeks of mania. I started at 60mg and tapered slowly. Was very depressed for awhile after I came off. Nothing can beat that feeling of endless energy.