Prednisone side effects, tapering

Hello everyone, I am having this odd problem... I first came here on my mania during the first few weeks of prednisone to discucss and seek help about some troubling side effects the steroids had on me. I started losing my ability to think as my mind started to thicken and I felt what I would describe as my thoughts being destroyed and a thickness replacing them. I started at 75 mg and gradually lost my ability to think clearly, focus and pay attention. One day I actually crashed on a stopped car while riding my bike on my confusion and utter blindness. Yes that happened I also started arguing with myself about things the steroids made want to do but I kept restricting myself. Some of you may have read my first topic which is something I'm actually ashamed of as I have come down from the high doses and have possibly regained much of my self-control.. sigh...

The side-effects have been plain horrid all this time, ranging from psychosis and extreme paranoia at some point to utter confusion, thoughts of running away, derealization, extreme depression, anhedonia, mood swings from hell, troubling thoughts and compulsive behaviour and thinking. It has been pure hell these three and a half months and as I am coming down now my platelets have dropped again significantly. They started dropping at 10 mg and went in two weeks from 160 to 35.. At some point I asked for help to help me deal with the side-effects and I was administered low doses of anti-psychotics to get through the rough parts. They helped at the beginning but I started gathering a lot of brain fog in combination with prednisone. I stopped them five weeks ago and since then I had been slowly recovering from the mass amounts of fog they left behind. The last two weeks I had also been recovering from great amounts of derealization and I started having panic attacks while slowly getting back in track with time.

So, here's when my extra problems started... On Monday my hematologists decided to increase the dose from 10 to 30 to raise my blood counts and advised me to go for the splenectomy. The truth is I never wanted to go through the operation but it seems that I have no choice anymore since platelets are dropping and I just can't stand taking the steroids anymore. On my first higher dose I experienced massive amounts of brain fog again and a terrible headache and on the second dose at night, while lying on my bed my left ear started ringing again intensely and feeling like my head was filled with cotton, I slowly stood up and went to the balcony. I was very dizzy, I couldn't breathe well and I started having a panic attack. I started getting so much information from my external enviroment that my vision became round and I started having problems with image transitioning while moving my eyes. I'm only 20 but despite that fact I seriously considered at that very moment the possibility that I was having a stroke.

I spoke with a psychiatrist, a different one this time and I explained to him everything prednisone did to me. He said that obviously I was hyper-sensitive to the stuff and I was surprised by the fact that HE was actually surprised from the anti-psychotic brain fog and not the prednisone side effects. The next day I experienced depression so bad I could barely speak and I felt like I was in a dream from the fog. The following two days the side effects became plain weird and I started getting literally high. I would pop the pills and for 3 hours my mind would go completely blank and my enviroment would become so intense and the colours so vivid I thought I was in Candyland.

This is when I started losing time and my short term memory started troubling me. Mid week I had another appointment at the hospital and they proposed for 40 mg. I couldn't deny since the situation had become critical and my platelets needed to go high. Round two of 15 mg went okayish. Round three though my short term memory become so short I couldn't even remember sentences being said and my enviroment become so intense I could literally see absolutely everything, every and single one little detail my eyes could pick up I could see it, an experience I just cannot describe. I started panicking and crying and I couldn't understand what was going on, where I had come from and how I had gone from one point to another while my parents were trying to calm me down.

The next morning I refused to take the pills and went straight to the hospital with a short term memory of 4 seconds and a ginormous brain fog, enough to be aware of what I was doing and what was going on. I lost my cool completely and started crying in front of the doctors. 40 mg had worked and in one day my platelets had gone from 35 to 50. My dose at this point is 20 mg and I take 10 in the morning and 10 in the evening and my method at this point to alleviate my short term memory and brain fog is to just grab my headphones and get lost in the music for two hours while my short term memory and fog refrains me from even sustaining a normal conversation.

I'm just scared. I don't know why I'm here again after all this time but my personality is gone from the meds, my sharp thinking has diminished into a black cloud and I feel like I have Alzheimer's. Despite the fact that all the doctors I spoke with reassured me that prednisone is not toxic and cannot possibly harm the brain and that the antipsychotics in the amount of time I took them couldn't have blocked any receptors permanently, I 'm still terrified. What could that night that my vision couldn't focus possibly be? I 'm afraid that I'll never get my mind back again along with my health and life and I'm scared of the possibility of actually having a stroke from prednisone high blood pressure that has disabled me for good. Opinions?

Hi Will,

I am glad to hear from you, as I was wondering just the other day how you are doing. You seem so much more clear-headed than before, but it sounds like it continues to be quite a struggle.

You expressed concern about the possibility of stroke with prednisone. Is your blood pressure elevated? If so, it can be treated with medications.

Your concern regarding the possibility of long term cognitive impairment is a challenging question. Certainly, you are under a lot of stress, and extended stress is known to cause long term problems, such as PTSD. There has been conventional wisdom that psychotic episodes can do lasting damage, which is why they are usually treated aggressively with antipsychotics to get them quickly under control. Whether this applies to iatrogenic steroid-induced psychosis, though, I doubt anyone really knows. I am not aware of permanent effects from low doses of modern antipsychotics, though.

Brain fog is a common symptom of withdrawal from prednisone. You might be interested in one person's list of symptoms from their prednisone withdrawal, that I found on a message board:

• Creepy-Crawlies all over
• Curious Buzzing all over and especially in my head
• Ringing ears
• Blurry Vision
• Can't sleep properly
• Head feels 'full'
• Can't focus on anything
• Making serious mistakes (IE paid two house payments this month and wondered why my account was seriously overdrawn)
• Memory is shot
• Feel like I have Alzheimer's
• Can't make simplest decisions
• Scary heart palps
• Light sensitive
• Sound sensitive
• Brain fog
• Severe, scary brain fog
• Chills
• Hot flashes/sweats
• Nausea
• Pacing behaviors
• Head pounding all the time now
• Problems breathing
• Anticness
• Skin crawling all over everywhere
• Thoughts of going insane by the day and never getting well...
• Flu-like symptoms when I make a cut
• Twitchy arms
• Dry, flaky skin...especially on hands and feet
• Feel like I'm dying

Sound familiar?

You also described brain fog after your medication was increased back up to 30 mg. Is it the same kind of brain fog, or something different?

I am astonished that given your reactions to steroids, your hematologist is giving you more steroids, and that they have not tried other treatments. Do they think steroid-induced psychosis is just a myth? The last I remember from you regarding other treatments is that you were inquiring about Rituxan - worrying about the side effects - and also reluctant to try thrombopoietins, as you did not want to mess with your bone marrow. Wouldn't you be willing to risk some possible side effects in the hope of avoiding the horrid side effects that steroids give you?

I understand that the doctors are pushing for splenectomy, which has its own version of "side effects". I would want to try Rituxan or thrombpoietins first... just my opinion. If you do choose splenectomy, IVIG could be used instead of steroids to get your platelets high enough for surgery.

Whatever you do, I think it is really important for you to move forward toward choosing an alternative to steroids, as quickly as you can make an informed decision.

I'm glad you are back!

Will:

First of all, you do not have to have normal counts to have 'safe' counts. Anything over 20 or 30k is fine for daily living for the time being. You absolutely DO have choices here as to the treatments you use. This is YOUR decision and no one can force you or scare you into Prednisone. Considering the severe problems that you had, I would absolutely refuse Prednisone and insist that they come up with something else. There are so many other options and if this doctor will not discuss alternatives, get another doctor. I'd like to put this entire paragraph in BOLD.

I know you are only 20, but you need to realize that you have rights here and it's time to be assertive and take control of this. I have never seen such a horrible reaction to Prednisone and I would urge you to stay away from it as it seems more dangerous for you than the low counts can be.

I don't have many options here. All that sounds familiar, yes. Rituxan needs approval and it's going to take time which I don't have. IVIG works on me for only six days and I can't get platelets high enough for surgery. It's going to have to be a combo of IV steroids and IVIG to get into surgery. I'm double-bound here. I am also not sure if I experienced true psychosis. Much of the paranoia stemmed from the fact I would look up too much on the Internets except two occurrences when I thought I actually had a parasite in my liver and something else I am ashamed to write here... I always had the capacity though to realize my misperceptions and every time I would leave the prednisone high behind I would calm down. My experience with the super short memory is not unique. I talked with another person that experienced pretty much the same thing. He went through a similar situation where as he told me he would just get lost and stare into space as if there was no time, just the present moment and without being able to remember even a second back, which sounds exactly like my own experience. It was like extreme retrograde amnesia. And when you get the sense of time back it feels like waking up from a very very vivid dream. It also feels as if I am losing the time behind as I walk. Even though I know what I did and how I went from one place to another I have no recollection of how it actually happened. It's odd. It's the exact opposite of getting drunk and instead of being unable to look forward with insight you are unable to understand the past and can only grasp the future or the current moment, as if travelling through time. Some times when I come of it it's like I get a second vision and until I get back to normal-ish I feel as if I have a black fog in front of my eyes which disables me and won't let me experience reality.. It's odd. Like when you are in a moment of extreme stress and fight or flight and just can't recall because everything happened so fast but in this case it's more of a long term thing.. Anyway I don't know what I am supposed to do at this point.. Everyone keeps reassuring me that all this is temporary. And about the psychosis I am 100% certain that if I had something to occupy my mind with at all times none of this would have happened. I don't know if this is a reassuring fact just to calm myself down concerning brain damage but it's the only thing I can do right now since the whole case seems like an impossible nightmare and I have to make decisions when it feels like I am in a dream...

Edit: The brain fog is different than the one antipsychotics left behind. It's fuzzy, it's short and it makes feel as if my mind is "narrow". My perception of space has also greatly changed pretty much permanently and everything seems so very big around me and I don't have the capacity to hold as many mental notes as I did before. I'm here 200% all the time like I'm sewn to the fabric of reality. What I think happened here is an extreme case of sensory flooding. And as time goes by and I return from the prednisone high everything goes out of focus again. It's so odd. As if derealization has turned from the inside out and transformed into... this.

2nd edit: Thromobopoietins... It's going to have to be very big doses since I always drop to 4k and doctors suggest against it because I'm young. They know exactly what steroid psychosis is, I assure you but I guess my self control is too good to even show my turmoil on the outside. Hell, I managed to pull off normal conversations on Medrol when I thought I was really dying... They are also sad to see me suffer and this is the best chance I have for the splenectomy as I might not get another one ever again. When I went to the hospital that day it was when "shit hit the fan" very very hard . I couldn't take it anymore and it's not fun being taken over by meds this way. I have no personal feelings and the ability to decide by myself anymore. I'm a being of just visible side effects...

You won't necessarily have to have big doses of the TPO drugs. Most people start off with a very low count and the usual dose of Nplate for someone who still has their spleen is one or two micrograms per kg of body weight. It's higher for those without a spleen. You might go higher to start with but usually the dose settles down lower in a few weeks.

What about the immunosuppressants to try? Mycophenolate or azathioprine are commonly used and have a reasonable success rate. They are also cheap.

I agree with Sandi and think that your taking the steroid is possibly a danger to your wellbeing. I refused to take dexamethasone after the first time because I felt so weird. I would definitely refuse with your side effects. Don't come off it without a taper though as that could be dangerous.

Again, you feel as if you have no choice. Splenectomy is a choice, and does not always work. IVIG is temporary for everyone so is not the ideal treatment for most. Whether or not you had real psychosis is not the issue. Losing your abilities can be serious, especially if you are wrecking your bike like that and suffering from delusions.

No one knows what dose of N-Plate they will need until they are stable on the drug and as Ann said, most can be managed on a lower dose. There are children who use N-Plate and it has normalized their lives.

I don't know what I'm supposed to do here. Relatives, doctors and acquaintances say "Go for the splenectomy". People on this forum say try something else. The person I spoke with who had pretty similar experiences to mine seems disappointed and suggests I keep trying with the steroids. The truth is splenectomy won't leave any visible or realized side effects and it's a very common procedure without serious side effects. Doctors keep reminding me that millions of people have a splenectomy for various reasons and it's not a process to be afraid of or something of a serious matter. I'm at loss. I just want a way out and I'm literally living a dream here, or maybe a living nightmare, in the literal sense. This is what it's like to me at this state.

Sometimes I wish I could just think the way I used to. I swear I was brilliant... And now I'm a confused emotional wreck with persistent ideas to the point of paranoia of never getting my self and mind back. I remember how I used to express myself so terribly articulately and knew exactly why I said everything I said, every time I opened my mouth and knew exactly how to express it using the perfect key words. I have lost my mind in this fog, my personality and now my sense of time is at stake. Some times I think I'm an idiot and it's my own fault because I can't occupy myself with something and keep my mind busy. Others I drop from the pred high and completely excuse myself. Others I obsess about my mind and previous way of thinking. Others I fear about falling or having an accident since my platelets could have dropped without me knowing and I'll die on the spot, and at these moments I also know this is the pred paranoia doing this, which makes it even more frustrating. Others I think I'll stop being able to recognize what is happening and what is going around me and that I'll stop understanding even spoken language on this "high" as I stop being able to form thoughts and time speeds up. Others I'll just stare into space with this new found "high" and get lost in the colors and regret for the fact that I'll never be able to experience my environment as if it was a still photography again and see absolutely everything and also feel sorry for the people who can't see what I see at these moments at this terrifying yet jaw-dropping and incredible state. And others I wonder if I have been like this all this time on pred and just started realizing it when I started dropping the doses. I can remember the "narrow mind" at 70 and even 40 mg. And how I was unable to remember phrases while talking on the phone in my confusion at 70 mg. Fun fact: I never payed attention to the world around me and now at times I feel as if I am part of a massive canvas with no personal identity whatsoever. I'm just... confused. I honestly believe that whatever I try at this moment will be a possible way out and things seem of equal odds. I'm a bit hesitant about the surgery myself too but at this point I don't know... This is not real life I'm living in atm. I can tell and I swear on it. I haven't been living in real life for a long time now.

Will:

You are over-thinking the whole thing and making yourself crazy. Nothing has to be decided this minute. You have time to think this through. You have time to research and make a decision for yourself. Everyone has advice for you, but you can put it aside and figure out what you think is best. Believe me, you will get past this point in your life.

Put your time and energy into researching. Here are some articles to get you started:

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

www.bloodjournal.org/content/120/5/960.full-text.pdf+html

www.bloodjournal.org/content/121/23/4782

Here is a video:

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Definitely over-thinking things.
You already KNOW what steroids are doing to you NOW, so why stay on them?
Steroid treatment is about 60 years old and splenectomy for ITP was cutting edge a century ago. There are many more options for ITP in 2014, than there were in 1914.
Folks here have already mentioned several to you. It is your choice, not your doctor's.

Your count is 35k? Are you having major bleeding? If I could get up to 35k, I'd be happy dancing.

BTW: Have you seen any panthers walking down the hallway? The trick to steroids is to remember (if possible) that it is just the drug, then relax, flow with it, and try to enjoy the weirdness.
Or use a treatment that doesn't involve steroids (as folks have repeatedly mentioned to you).
Hey, if you think Prednisone is whacky, don't even consider Dexamethasone pulses.


.

I like how you say I'm overthinking this when I barely have space in my head to think. It's almost funny... It looks like that even at this state my mind struggles for understanding as it has always done. weirdjack it seems that my brain is completely incapable of hallucinating and even when experiencing misconceptions and extreme paranoia I come to realize after a couple minutes that what I'm thinking is most likely extremely stupid... The only time I would "hallucinate" was when I was asleep and pred was giving me very vivid and three dimensional, real-like dreams or even awake and sometimes my thoughts would become three-dimensional and I could perform... odd tricks with them. I don't have much time to think and I'm in black fog that seems to extend in front of my eyes and disables me from thinking clearly enough. Today after a walk to the movies my mind seemed to be slowly returning to a more normal state after three days on 20 mg which is a rather low dose. Pred accumulates on its side effects and I had enough time to clear them today to get as close as I have ever been all these months to my normal self. I have a terrible headache, I have a thick black sheet above my forehead, I have a hard time thinking and some trouble remembering a few things, I can almost see my good old tangential thoughts coming together again and finally objects around me seem of proper proportions. This stuff turns my mind and the way it works from the inside out.

Doctors had a meeting at the hospital and it looks like tomorrow I'm going in for the IVIG and the steroids combo and we'll see how it works. I still have time to think this through, it's true. The surgery papers haven't been signed yet and noone has the right to put me through the procedure if I refuse to sign the papers. Everyone has an opinion, the internet is full of people saying their own thing, relatives talk, doctors talk, everyone says something. But it looks like all the doctors I have spoken with, and they are not few, they all suggested this. They have the papers, they have the knowledge, they hold the statistics and all the year-long experience and this is the best hospital I could have gone to in possibly the whole country. They gave me every right to do what I want and decide for myself and they emphasized on that fact, but this is what they are all suggesting. I know, it's an organ, and once it's out of me there's no going back. But what the hell should I do?... I don't think anyone is going to prescribe me with pred or any other form of cortisone after the side effects I experienced both with Medrol and pred. Dexamethasone seems to be out of the question because when I asked for some other form of steroids to be taken at home, heck, even intravenous in liquid, which seems didn't bother me in the beginning, they told me that intravenous infusion was a medical act only to done by a doctor or authorized personnel and that dexamethasone was also out of the question because it wouldn't work. I don't know. I just don't know...

Will:

You don't have space in your head to think because you are scrambled from the steroids and all of the advice thrown at you. If you honestly, truly feel that your doctors are giving you the best advice due to their knowledge, go with their suggestions. You don't have to please any of us. We gave you the options and our suggestions but if that is only confusing you, don't listen. Everyone who decides to go the splenectomy route gets encouraged here. We don't ask anyone to second-guess. All I ever want is for people to make an informed decision.

ITP should not take over anyone's entire life. It should not render them incapable of functioning or make them feel so depressed or confused that they don't live their life. If those articles are too much for you, I'll give you a short synopsis on the risks of splenectomy to at least consider. It is not risk free.

1. Patients with ITP are actually more prone to blood clots than the normal population. Splenectomy raises that risk.

2. Splenectomies do not always work and can fail weeks, months or years down the line. Be prepared for that. Sometimes the liver can take over the function of destruction after a period of time if it isn't already.

3. If a splenectomy fails, patients may have to use immunosuppressants (Rituxan, steroids, Imuran). Being asplenic places them more at risk for sepsis.

4. If a splenectomy fails, patients may have to use TPO's which have a possible side effect of blood clots. Being asplenic places them more at risk for DVT's and PE's.

5. Even after having the vaccinations prior to splenectomy, a person can still acquire sepsis. You have to monitor your temp when you get sick and get help immediately with a fever. You also have to keep the vaccines up to date for life.

Consider the big picture, not just now. These are the things that the doctors don't tell you. Many people have successful splenectomies that erase ITP for years, and they stay healthy. You could be one of those people. It's a tough decision, but you have to do what you feel is best for you.

Will,

As you said, you can always change your mind, but you are quickly moving down the path to splenectomy, and the farther you go down that path, the harder it will be to change your mind. As I understand it, the only purpose for you to be having IVIG plus taking prednisone is to get your platelets high enough for a splenectomy.

What has concerned me, and others as well, has been your comments that you don't really have a choice. Rituxan, thrombopoietins, and splenectomy can all be the right choice for different people depending on their circumstances. I hope you have followed the links that Sandi gave you. They will help you to make a more informed decision.

I apologize if any of our comments here have come across as too coercive. Some of us have some pretty strong opinions, but the reality is that there is no certainty of making the right choice no matter what you choose... it's all about probabilities and balancing the potential risks vs the potential rewards.

Personally, I trust the collective wisdom of the folks on this message board - as it is informed by the cutting-edge research of hundreds of the best doctors from around the world - more than I do the opinions of any small group of doctors, who usually do not specialize in ITP, and usually are too busy to keep up-to-date with the most current research in their field.

But more than that, I will not substitute anyone else's judgment for my own. Neither should you. You may feel that your brain has turned to mush, but you still seem pretty sharp to me... sharp enough to follow Sandi's links, and find a few of your own, and come to your own conclusions. In the end, nobody but you has to live with the results of your decision.

If you educate yourself as much as possible, and make the best decision you know how, then whatever the outcome, there can be no regrets.

Thank you all for your responses. I mostly feel like an idiot... I looked at the links above and searched a bit more by myself. I don't know where to begin with...

1. Reading about the possibility of thrombosis and sepsis makes me completely paranoid which is not fun at this point in combo with the steroid paranoia and mood swings. I'm young and healthy and it can only drive me crazy for thinking about my health maybe in 30 years from now and I don't think this is healthy at all for anyone to do... The risk for thrombosis is still very low and doesn't seem like a threatening factor.

2. Infections. This is something that I'm possibly concerned of. The fact that I'm going to have to seek help every time I get a fever sounds rather troublesome. But it still doesn't sound as troublesome as having to check in at the hospital every now and then. There will be however blood tests every few months that can't be avoided either way. Vaccines every five years are not an issue.

3. It looks like response to both corticosteroids and IVIG increases odds of a splenectomy cure, especially when I go from 27 to 47k with one round of IVIG in just one day... I respond to treatments very fast and very well generally speaking but I also drop down hard when I'm left without one.

4. I'm used to feeling like shit and that is starting to concern me now I'm coming back. Being able to think of something smart to say or do is a small everyday accomplishment. Keeping track of a steady stream of thought feels like victory. Minimizing "processing power" is essential and the worst part is that it's a challenge I have come to enjoy, which seems twisted and unhealthy. Due to the fact that I can't think as much I have become more assertive and emotional. Prednisone makes me feel things that I thought were unlikely and despite the torture I sometimes think how I'm going to have to get back to real life. I was a dictator in what I would demand from my mind and self and I would accelerate my thoughts so fast just to get where I wanted to and beyond. It was a horrible yet an oddly relaxing ride at the same time to escape from my own self. I know now completely what the love/hate prednisone relationship EXACTLY means. I never had as much time to look around me or talk with people despite even the fact that behind careful and calculated words, not to show the madness beneath, a rampant and crazy mind lies there. I feel as if I'm on a journey in the ocean on a raft with nothing but the basics. Sometimes it sucks but every time things calm down you learn to enjoy the simplicity and the beauty of it.

5. Fog, swings and lack of continuous stream of thought. Presented above.

6. Despite the fact I presented all these positive points above I'm still afraid and clueless. I know that prednisone makes me extra paranoid concerning the surgery and it's not just that but being aware of the fact that I'm going to have to tolerate pain plus paranoia plus sleepiness plus brain fog doesn't sound all too good. The steroids have become like a sort of drug and an end has to be finally put. I'll probably chicken out just before the surgery but I will to do it either way some time later when I will have changed my mind again. The odds are heavy, it's true. I wish I could say something a bit more reassuring but only fate can decide as it seems... And I'm terribly sorry to end the post this way...

Platelets were at 70k today. Wish me luck whatever happens in the end. Surgeons need 100k to start preparing things. I might not even get there eventually, who knows...

Edit: A relative mentioned at some point that especially younger patients who do not wish to be bothered with treatments anymore were the ones to commonly opt for the splenectomy. And I remember reading that too on my research...

Just a few things:

Thrombosis isn't just a threat when you get old. Young people can and have experienced blood clots here.

Prednisone and IVIG success do not predict splenectomy success. Those are old articles and have been disproven.

After a splenectomy, you need a flu shot yearly in addition to the ones every five years.

Your edit is absolutely correct. Younger people who are sick of treatments do tend to opt for splenectomy. I am glad you are thinking this through so carefully. Whatever you decide will be the right thing.