Prednisone and steroid psychosis

Just looking to compare notes really I guess.

My original dose of prednisone was 70mg, which actually made me go mad. (It was also tax time, that didn't help). And that dr didn't make me taper properly so my platelet count promptly crashed again.

Anyway, then I did Rituximab and was down to 5mg prednisone every other day when my count went back down to 8, and my new Dr put me back up to 50mg prednisone. Platelets up to 274.

So my tapering pattern looks something like
50mg for 5 days
40mg for 5 days
30 mg for 5 days (this is where I am now)
20mg for 7 days
15mg for 7 days
By which point I will go back for another blood test.

I feel awful. Not quite as bad as when I was on the 70mg but not far off it. I have horrible thoughts about hurting myself and other people. I am either super tired or in a frenzy of energy. My whole body feels like it vibrating, and I can't sleep. My hands and feet hurt and I am so hungry!

I guess these are just normal prednisone side effects but I am honestly not sure how long I can do this. It is utterly terrible. Is there anything I can do?

And does this taper look right? I have been reading that maybe it should be longer and slower...honestly I really don't think I could do that. But then again it feels like a waste to take the steroids and not get the best effect from them.

*sigh* I am mostly rambling. It's either that or i start arguing with people on Facebook because apparently prednisone also removes any filter I may have previously had on my thoughts!

Kate:
The high doses are rough. I stuttered, didn't have any tolerance for noise, shook constantly, couldn't think, felt like I wanted to scream all the time....the list goes on. It was very hard to control, especially at work, but I just took bathroom breaks when I needed to and went in there to just breathe. It helped. At home, my 3 kids were a bit much en masse so I would go into my room and call them in one at a time to talk to them until I felt ready to tackle the ringing phone and loud voices. It is difficult to go through and all you can do is take it one hour at a time. I tried to find ways that made it easier to cope. I hope your thoughts about harming yourself or others are just part of the mood swings and is not something more serious. I had odd thoughts too but not like that.

Your tapers are very fast and while that isn't good for getting counts up, it's probably best since you don't tolerate it well. That's okay, most people don't. It will get better the lower you get, so maybe you should just continue the taper, get off of it and try something else if counts drop.

My opinion from years of prednisone- I'm not a doctor-- You should not be taking prednisone if you feel like hurting yourself or others. Your reaction sounds extreme to me, doesn't sound like a safe drug for you. If I were you I would get off of prednisone as soon as safely possible and not take it again. Its so very rare that anyone has sustained remission from prednisone. Its a cheap drug and thats why its given first. Usually people don't have as bad of experience as you are describing. I was always okay on it- not psychotic. I started with the high dose of 80mg and tapered, counts fell along with the taper. I went to Rituxin, then the TPOs. Promacta and Nplate had much easier side effects. I've had no real side effects from Nplate and it does the job to keep my platelets to a safe count.

I tried dexamethasone which is 4x stronger than prednisone(I think). I WAS psychotic on that! So I know how it feels. I was hearing voices, not able to sleep just lying awake for days- terrtible. I hope to never do that again. Take care of yourself. You can make your own decisions. best of luck

Kate
I started on 45mg a day (I'm only tiny) and was either absolutely manic or absolutely shattered on it. I never had bad thoughts fortunately. I just slept when I could and was often up cleaning cupboards at 4am !!! Once I got down to 20mg the mania disappeared. It really is a horrid drug.
Once you get to 7.5 mg you must taper more slowly .Here is Rob 16s post regarding the reasons why
pdsa.org/forum-sp-534/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html#54152

Thank you @poseymint and @sandi and @mrsb04. (Does tagging work on here?)
It helps to know I am not alone with some of these side effects. I agree that prednisone is probably not the right drug for me. Luckily the worst feelings seem to be wearing off and hopefully I can just power through this until I get to start something else that will be more effective.
In the meantime, I should try and take advantage and do some cleaning

You're headed to a tolerable dose, so just hang in there.

I didn't figure out the trick to Prednisone until my second round. I realized that I had been taking myself far too seriously so I decided to lighten up and laugh at myself. Things went so much better when I did. I did some pretty stupid, funny things and I had to stop being so hard on myself to be perfect. We have had threads here about funny steroid stories and that has helped many people through the hard times. One woman that used to be here told us that she was always so hungry that she even fantasized about eating dryer lint. It can make you feel crazy, that's for sure. I once went driving through a parking lot after it rained and splashed a whole family by speeding through a large puddle. It didn't even occur to me until I looked in the rear view mirror and saw their stunned faces and arms waving. Whoops. I felt horrible but I knew that wasn't me. Just keep your eye on the light at the end of the tunnel. You'll get there.

Kate
I also lost my mind on prednisone. I was suicidal and stopped eating. My husband had to convince me to drink ensure and it took me all day to drink one. I could not sleep, cried all the time and felt hopeless. Pred never kept my counts up. They dropped as my pred decreased. I would never use that drug again. I did rituxan next but it had no impact. Then to promacta. I hover around 30000-50000 now without anything. I had had a few drops and just take low dose promacta for a few days and things seem to get back on track. Good luck.

i am invincible on the higher doses of prednisone. i chatter like a maniac. and i have no filter. i walked out in front of a car not even thinking.

on lower doses? (especially right after a drop in dosage until my body gets semi adjusted.) fatigued. grumpy. moody. emotional. think about what happens after death. missing and crying over my father who's been dead for 6 years. let me alone dont bother me.

I love these stories! So funny. Last time I was on prednisone, I yelled at a 96 year old woman! omg and I was at work, she was my client-- so UNprofessional! But to my defense she was yelling at me first, right in my face. I wasn't yelling anything inappropriate, just raised my voice to CRAZY level.
I apologized to her, telling her I was so sorry. She said she was hard of hearing, and I was the most wonderful person she'd ever worked with! haha so I got out of that one. But I knew I had lost it, and seriously had to get a grip. When I finally got off pred (or below 2.5mg) I remember feeling so incredibly good, like I was on vacation- my anxiety level was so low.

When I was on the high doses, my poor dog got the worst of it! She was a barker if someone came anywhere near our door and most times, she was hearing things. I would yell at her and then I would cry and apologize to her. By the time my husband got home from work, my temper was better. I told my hema dr. I wouldn't do anything higher than 30.

Thanks all...i know it sounds dreadful but it does really help to know that I am "normal", and also I think it has reassured my partner that these extreme side effects are just part of the prednisone and we have to work through it. I tried tapering again and my platelets dropped right down, so I am back on 30mg for now until my new treatment (eltrombopag) comes through, then they will let me taper completely off I hope.

The worst thing this week (and it does seem to change around) is firstly my feet feel like they are on fire, and secondly I am massively craving meat after being a vegetarian for years!

I had a time when my knees felt like they were on fire. I ended up tapering at that point because I was still on the high dose and wasn't going to take that side effect.

Thank you for bringing up the topic! I was on 70mg x day for about 3 weeks, tapering off to 50 and then 25. I slowly lost my mind - literally - and had to be hospitalized for a full blown psychotic attack. My husband tells me now that he had noticed the extreme mood swings but didn't know how to gauge 'severe.' He is also incredibly patient, tolerated too much abuse in my opinion, it still pains me to remember things I said and did. While all this was happening, My blood count crashed down to 8K , I was in hospital for a week. The good thing, while in hospital I was seen by a different Hematologist who happened to be very experienced with ITP. He started me on NPlate then swithched me to Promacta. As for the recovery of my mental capacity, it has taken 3 loooong months, but I am finally feeling almost like myself again. Needless to say, I consider myself officially allergic to Prednisone.
Best of lucks in your path, maybe by now it is all over. Take excellent care!