Steroids, feeling odd

Hey everyone, new here. Just wanted to ask about your experiences with steroids. I 've been administered for the second time steroids, this time prednisolone. I wanted to ask how did it make you feel? I take 25mg x3/day and I notice that after every 8 hours I have to take the pills how my feelings change in a very peculiar way... While on the steroids I feel sort of enlightened, my feelings just become like a shadowy liquid blur, colors become more vivid, my usual random thoughts and ideas subside in the background and my whole point of view basically changes its spectrum. It's like I 'm a different man. And it's scary :S . The worst part is I only realize it after the drop, while on it I feel totally fine. An extremely odd change of focus. What is that? I 've read about dopamine and stuff and how psychosis works. Is this the same thing?.. Please shed some light into this, I really think I might start needing antipsychotics. It's tolerable but I don't like it and it's not very funny to have two kinds of worldviews within the same day. Also my ears buzz like a freakin jet engine and I feel dizzy and I don't want to get used to that either. I feel so unique trying to describe this because I 've found nothing about this googling around for ITP and steroids. I just want to feel like myself.

It is recommended to take the whole dose in one go preferably before 8 o'clock in the morning. That way you can feel fairly normal by evening and get a reasonable night's sleep. But it is also usual to feel odd in some way while taking it. People feel variously spaced out, dizzy, manic or depressed. Everyone is different but everyone feels weird in some way.

What you are describing sounds to me like steroid-induced hypomania, which is something akin to (and less than) mania, but without the psychosis. Only a doctor can say for sure.
www.princeton.edu/~achaney/tmve/wiki100k/docs/Hypomania.html
It is important to know that the effect is dose-dependent, so at a higher dose this might become full-blown (steroid-induced) mania or psychosis.
Mild euphoria and sleeplessness are normal. If it is bad enough to be scary, or even overly annoying, then you really should talk to a doctor. A low dose of an anti-psychotic should alleviate the symptoms and also stop your mind from racing so you can get a decent night's sleep. You don't have to be psychotic to benefit from anti-psychotic medication.

Prednisone can cause all sorts of odd side effects. Ann is right though, it should all be taken first thing in the morning. Did your doctor tell you to take 3 doses? I had a hard time with one large dose because I shook so bad and felt so wired that I couldn't function at work. I divided the dose by 2, and would take the second dose after lunch. The adrenals handle it better in the morning. The body does become dependent on it and knows when the next dose is due.

I'm trying to find some articles about it. Everything you search any more comes up with message boards, stupid wiki answers and other non-credible crap. If I find anything, I will post it for you.

allsideeffects.net/prednisone-side-effects/

www.prednisonefacts.com/

reference.medscape.com/drug/prednisone-intensol-342747#4

Thanks again. I saw the websites and I know most of that stuff. Docs said salt and sugar is off for me anyway. It's just odd. I'm used to being/feeling in a specific way and as a person struggle and constantly try to achieve internal balance on my thoughts and behaviour. I don't really know how there are people out there who take this stuff and the only word they mention circles around "crap" or feeling "bad" or "agitated". Maybe I need to reconsider some things about myself. Anyway I have an appointment with a psychiatrist on Wednesday and I've been prescribed some Xanax for the night to help me focus my energy better during the day. I'm just scared of myself and the possibilities. I constantly worry and never let go even at the tiniest little things. Also the big dose in the morning sounds like a big no. I 've felt it with methylpred already and it's never going to happen especially since this time the dose is much bigger. Double dose should somehow be considered though...

Edit: Thank you for responding on my previous topic Sandi too. Platelets today were 132 thousand. :silly: Seems like I 'm gonna keep with the steroids for good this time and the advice was very helpful. Docs said that since I respond well, the remission rate is about 70% and I'm willing to try since steroid effects are always reversible and no other scary side effects and permanent changes to my body (splenectomy) need to be included. I 'm slowly getting acne from the arm they first administered the IV steroids and I will probably put on weight, but if this is reversible I'm going for the ride as long as I can keep my mood in check. I 've been through horrible anxiety in the past and if 3 months is the cure with such high chances, then I'm taking it without even a question.

I'm glad the steroids are working for you! When I was on my high dose of 60mg I had the same reaction. Colors were very vivid, I felt "high" for hours and I was in a good mood. Come afternoon when the "high" started to wear off I was a grumpy, agitated you-know-what and everyone needed to avoid me! On 20mg I still get grumpy (I just call it roid rage) but I do not have the euphoria before. I guess that's what people feel like when they are high. I've never tried any sort of drug in my lifetime, so I have no idea if that is an accurate description or not.

Pred:

The side effects are not always reversible. There are some long term side effects that can be quite nasty if a person is on them long enough. Cataracts, glaucoma, loss of bone mass, thin skin, muscle waste/loss, arthritis, Avascular Necrosis (death of hip bone, replacement is only fix). I've been on and off of steroids for years and have been on it constantly for the past 8 years. I have 3 or 4 stress fractures in my feet that won't heal, a lot of muscle loss and thin skin.

I would not be one to ever minimize the side effects. When I was first on high doses after diagnosis in 1998, I almost lost my job. It was very fast paced with lots of deadlines and I was making mistakes that ended up costing people money. I lost the ability to focus and think clearly. After weeks and weeks of a stressful job while being on Prednisone, I went into work one day, felt totally overwhelmed and started to cry. I couldn't stop. They sent me home and I ended up crying non-stop for three days. I couldn't handle my life any more. I felt like a total failure and thought I was letting everyone down. I had three kids who needed me constantly and there was no time to breathe let alone rest or chill out. I was dropping balls all over the place. It turns out that I had steroid-induced depression and anxiety. It took months to get to get back to normal. My life was stressful enough without the steroids but adding them to the mix turned me into someone who could not function. Somehow I made it through. I am stubborn and refused to give up or give in.

Yes, people describe Prednisone as "crappy" and "nasty", but we all have stories behind those words. Unless you hear the stories, you don't truly realize how much it affected most of us. I could go on and on but I think you can get the gist of it from my story. I didn't have time to analyze myself as well as you are or try to get in touch with my feelings. You are a step ahead.

You are not alone here. You said the little things bother you....I have a story about that. I used to watch MASH at bedtime every night. While I was on Prednisone, I couldn't stand it. Hawkeye and BJ have a way of standing with their necks bent down and it bothered me so much I wanted to throw something at the TV. How ridiculous is that? I actually got angry just looking at them. There were a few other things like that that just drove me nuts.

Hang in there. The good thing is, this too shall pass.

I think the 70% remission rate is a tad optimistic.

Okay, maybe I don't want to admit it, but that's not funny anymore... I came back home tonight and was feeling like a freakin guru or a shaman. I came back into my room and I felt like I wanted to trash the place and go live to the Himalayas. I'm starting to feel disconnected with everything around me and I 'm afraid it's just getting worse. The truth is I have wanted to leave many things behind in my life even before everything started, but that's just ridiculous, not being able to recognize or feel a connection with my own personal space and feeling like I want to fly in outer space and never look back down on Earth is way too much too handle. I can't tell if I'm hyper focused or all over the place. I'm just not here. I'm exhausted, tired and not feeling like myself. I have no clue if anyone has ever experienced that, but as a person I 'm not the kind to feel free of certain objects. I connect, grasp and attach to things and right now, at this very moment, nothing around me gives me even the faintest sense of ownership. That's just very, very messed up... :sick:

Edit: I have acne from the arm they first administered the IV steroids which is now starting to get worse. Also tonight I got a pretty bad leg cramp. Irrelevant? Mostly likely. I haven't been going anywhere these days so my muscles are not in the best shape after 3 weeks of basically doing nothing but sitting. No clue.

Personally if I were you I would be talking with my doctor about how this is making you feel - doesn't sound right.

Melinda is right. I really hope you will see a doctor about how you are feeling.

I third that. I think you said you were on 80 mg of prednisone? That seems high. I was only on 60 at my highest. Do I think it could all be the roids yes. Everyone reacts differently, but it def messes with chemicals in the brain. I think the doctor needs to know of your symptoms.

I remember when I was on it I would take 1/2 in the morning and 1/2 at lunch to reduce insomnia at night.

Vdeutsch85, I am pretty sure your weight is taken into account when it comes to Prednisone.

The first time I was put on prednisone I started at 85mg. A few years later when I was put on it again I started at 80mg.

I was about 10 pounds lighter the second time round.

Usual dosing is 1mg per kg of body weight.

Cramp is usually caused by dehydration because the steroids cause the blood sugar level to go up. The body attempts to get rid of the sugar by peeing it out. So you pee a lot and get dehydrated. So try to drink more and see if that helps.

I'd also agree that you need to see your doctor. Your symptoms sound more like steroid psychosis which is not a good effect to just put up with.

Cramping can also be caused by potassium loss, which can be caused by Prednisone. It is probably related to the steroids. Try eating some bananas and drink Gatorade.

I also felt disconnected, but mainly with people. I remember my sister having an emergency appendectomy and I could care less. I didn't go to the hospital to see her, just didn't care. All I could focus on was me.

Make sure that 'acne' on your arm isn't a staff infection.

You said you are seeing a therapist? I thought I saw that somewhere. You need to tell one of your doctors what is going on. May be time to taper more.

Ghost rider,

That makes sense as far as weight goes. I am a pretty small person

I 'm eating bananas, about 3 of them every day and I remember reading somewhere about potassium loss. I'm eating fruit, vegetables, basically I'm eating everything and at healthy doses. I drink a lot of water and I sweat a lot at nights. Biochemicals came back great yesterday so I'm not really worried about anything else. By the way this stuff is like psycho medication only for the strong-willed. Good lord I am discovering facts about myself I never even knew. I know where all this is coming from, I know what I want to do with my life and I know things that I 've been hiding and denying to myself for years. And to be honest I'm scared s***less. I was forced to solve entire complexes I've had for years, organize and redirect my impulses, make plans and explain to myself a billion little things today just because of feeling such great compulsion to do things I had forgotten I even wanted to do. I mean that's great but the way this stuff works.. It's just so incredibly wrong! I'm literally making leaps overnight because I have no option but to face my own self.

What are you doing to occupy your time and take your mind off of things? Go out with friends, read, watch TV, etc.

I haven't been doing anything basically for the last couple years and I 've been in a very bad place for a long time. When ITP came to top everything else I felt like I had no future any more for absolutely anything, feeling even more restricted and bound by situations I never even had a say in. I'm very sorry and I know I most likely scared some people with this last post but the truth is that every time a possibility rises in front of my eyes I'm scared to take it, holding back for a billion reasons and the way the steroids make me feel, makes me scared something stupid will just happen and I 'll snap, walk away and never look back at anything. It's fears falling apart since I can tell there is basically no reason to hold onto and I'm afraid control will suddenly slip out of my hands and everything will just change in a matter of seconds. This is a great forum, I'm very sorry for my crazy venting and I'm very grateful for every kind of information you have offered me. The only excuse I could ever give you or myself is that I'm on steroids and the fact that I'm a terrible, egoistic and an absolute self-control maniac. And I'm not really being myself I think.

Do you live near your parents? Do you have brothers or sisters? You need to tell someone what is going on. You need to talk to someone in your real life.

Don't apologize. Everyone vents here. We're concerned about you though and trying to help you. So I want you to do something for us. Call or visit a relative or friend. Today, okay?

predniman, the first I was put on steroids it effected me quite a lot in regards to personality.

I was not aware of it at time and I upset my kids and my wife with my behaviour. I become very short tempered, would be very quick to anger and I did say some hurtful things to my wife.

It wasn't until we had a blazing argument that I realised what a complete dick I was being and how much the steroids had effected me.

When I knew they were going to put me steroids again (a few months ago) I sat down with my wife and told her to tell me the second I started to act up and bless her she did.

Because of my previous experience I knew that I might start again but not realise it so she acted as my warning guide and when every time I started to act differently she immediately let me know which gave me time to walk away and take a breath. This time round I have managed to have much better control of myself and I have not upset either of my kids, my wife or anybody else.

Admittedly on occasion it has been damn difficult but with the help of people around me and because of my previous experience I was much better prepared for it.

Steroids can haver a terrible effect on our personalties, the first step to acknowledge this and make other around aware of this.

For me it helped to have people be able to tell me when I was acting crazy so I could take a step back and get control.

As Sandi says, you need to find somebody, anybody, to talk to. Even if its a stranger on the end of a telephone and sometimes its easier to talk to stranger then to those who we love dearly.

You are not the first person to feel this way and you certainly will not be the last. There is no shame in asking for help.

Please contact somebody.

I'm 19 and I basically still live with my parents. I'm writing down like mad these days all kinds of crazy things and the truth is I cannot possibly excuse myself because I have no starting point to compare how anybody else has been feeling with this stuff. I think I'm suffering. I think. But I'm not really sure since like I said I can't compare and I can't enter other people's heads. I talk with people around me every day but I just can't vent this off because I can't find an excuse for myself and since my limits of tolerance are great only for that reason. All I can tell you is that my brains are complete and utter salad and I don't like this anymore. Completely, utterly irrelevant and painful memories are travelling through my mind constantly making me have to deal with myself all at once and crazy thoughts I 've been keeping away from myself are bearing their claws yet again constantly shifting the way I feel and view things reminding me of how I used to feel about myself or the world... Quite possibly I would describe it as "reliving" but I cannot possibly be sure about this assumption. I would describe it as "liquifying" the way I feel about my self and shifting the way I feel and recognize myself as a person... It is... nasty to say the least. It's like travelling through the past at breakneck speed and intensity having to face my own mistakes again and again and having to rearrange my whole beliefs and standing points. Sort of.. And I can tell that's just my brain firing up all at once. It is quite nagging and annoying but I think I can manage and I 'm slowly feeling increasingly less paranoid. I have been seeing a psychologist ever since this whole deal happened suggested by the docs because of my hideous reaction to methylpred the first time around with the steroids. Tapering starts tomorrow by the way and all I can say is "about freakin time". I also have an appointment with a psychiatrist on Thursday to help me get through that stuff and I have already described much of my condition in the best possible way. So help is on the way. This is all in my head due to the steroids, I know it and be certain, I'm completely aware of it. And I have never tried drugs in my entire life but if I did I suppose that's what a "bad" drug would do to you. It directs my feelings somewhere, my attention somewhere else, my interest completely elsewhere and my thoughts in the skies. And I have a lot of things unresolved and unchecked in my head... Thank you for all your concern, advice and help. You people seriously are great.

You have nothing to apologize for. That is what we are all here for - to help each other get through what we have to get through. I am sure where you have been has been scary for you, and so it has been scary for us too because we care. It sounds like maybe you have pulled back now from the edge of the precipice... I hope so.

You are a very intelligent, insightful, and articulate man, especially for your age. Sometimes intellect can be a two-edged sword, a gift and a curse at the same time. It leads us sometimes to get stuck inside our own heads, over-analyzing everything, and the thoughts can start looping on themselves. It also can fool us into thinking that we shouldn't have to ask for outside help.

I am very thankful that you are looking outside of yourself, talking to us, and planning to see a psychiatrist. It is too bad that your doctors didn't bring you in with a psychiatrist when you first began experiencing trouble. There are psychotropics that could have helped you with the symptoms, much earlier.

It may be that your symptoms are diminishing as your body gets used to the steroids, and that things will get back to normal as you taper off. Be careful with your taper, though, because the flip side of manic is depressive, and if you taper too quickly you may be vulnerable to severe depression. You may want to communicate this concern to the psychiatrist, as well as having a friend or family member you trust who understands your situation and can check in with you on a regular basis.

Please keep writing to us. We want to be here for you, and if we don't hear from you we will worry. Hang in there.

Pred:

You really need to distract yourself from yourself. You're thinking too much. Take a walk or call a friend. Do you work or go to college? Give your brain a break and find a funny movie. I think Rob is right, you are stuck inside your own head.

What's your first name? I'd rather call you that then Pred!

Thank you Sandi. I think I 'm feeling better. I suppose that's what psychosis must feel like.. My name is Will, glad to meet you. I have found some things I could possibly distract myself with and I'm slowly feeling better. I 'm honestly coming to terms with many things I 've been keeping away and this the reason I am feeling better. I 'm not afraid, I know what's true, what's right and wrong and I 'm slowly walking out of it but this is undoubtedly all very disturbing. Mood swings will come and go but it's seriously getting better as I work my way around it. Maybe a book or a good movie could work. I cannot possibly work like that and I don't have a job these days being dependant upon family funds. Your support has made me feel so much better, thank god I know for sure I am not crazy and I 'm very glad I was able to speak my mind like that and get at least a positive response from somebody. I 'm feeling normal all the more and I 'm incredibly sorry to make you worry since after all I 'm just still a kid to most of you roaming the Internets. I was just scared and this is not something you have to deal with every day. Your support and only has provided incredible relief and I feel like I have a reason for myself just to relax and take things slowly. Fear is what has been dragging me along, completely unjustified and the little faith I 've always had towards myself and feelings. And it's only fading away since I can recognize this is only information and it cannot possibly harm me in a physical or immediate way.

Best regards,
Will

Will - one day at a time.

Will-

I'm glad you posted your feelings/experiences as I have had similar issues and I wasn't sure if it was me, the prednisone or the stress/lifestyle change I have had over the last 5 weeks. I've been staying indoors, haven't been allowed to work since April 30th and haven't been able to go back to working out like I use to. It really plays with your mind!

I too experienced a lot of periods where I seemed to revisit past mistakes, whether it be with relationships, my work, schooling, etc. I questioned every single major decision I ever made and I never seemed to come to a resolution other than to want to disband and clean house of everything. I have even found myself to be an isolationist at times with my boyfriend. We lived together before I was dx'd with ITP and hospitalized, now I have been staying at my parents and when he comes to visit sometimes I find myself feeling disengaged. Generally it takes 30 minutes for me to warm up. That is most definitely NOT who I am, so I chalk it up to the prednisone talking.

The one thing I will say as you taper off is the feelings change. I have begun a period of reflecting more on what I want out of life now that I know I have to live with a disease. I was sent an article by a close friend of mine which I think you might enjoy reading: www.huffingtonpost.com/mark-manson/the-most-important-question_b_4269161.html

I hope this post finds you in a better place today. If you ever need to reach out, don't hesitate!

Sandi, you are absolutely right, indeed one day at a time. Also I decided that there is no possible way I'm sleeping in my room tonight. I can't handle all this at once. It feels like I'm entering a round-shaped room made out of a single piece of mirror that just shifts, distorts and constantly reflects my image, changing it's shape in a very, very bad way and it's driving me absolutely nuts, constantly throwing me from obsessive-compulsive and self-targeted thinking to just pure anger I can't express or get out of my system. Every single point of reference is being reprocessed, restored and reshaped by my logical mind about every single fear I 've ever had. This is unbelievable, I don't think anyone could ever possibly imagine what it feels like. I have been keeping myself away from many things I have wanted for years and every single barrier of self-resistance is being removed one by one. I just went for a walk today somewhere I haven't been before, far away from my home and I felt such incredible relief while also realizing that every time I get closer to home it's like something is pushing me away, as if I turned a magnet the other side. I am calm, I am collected but seriously this stuff is just terrible, I don't know what else I could possibly say. Tapering starts today and Xanax seems to be helping, even at the small doses I 've been perscribed. It looks like autoimmune disorders don't just happen within my own blood stream... Is this just really self-reflecting and "changing"? And why does it sound so incredibly horrible and weird when you put it down in words and analyze it? And that's just a question lingering in my mind about many, many things.

I woke up feeling refreshed and 95% normal. My thought patterns are getting back to normal and it's only getting better. I can't possibly go back there and to my old habits for at least a week. Every time I try to do something I used to out of habit or addiction or even seeing and doing something that resembles something I used to do, the process itself is only making it worse, causing me to suffer even more. I really new to find something brand new to occupy and absorb myself into. Venting here every little crazy thing that comes out of these rabbit holes isn't really helping and it's not the place to discuss philosophy all day long... And I think I'm done here, at least for now.