Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hey y'all I just wanted to briefly share my experience with prednisone. This way, other people struggling with the same issues can know that even the rare side effects can happen, and whoever else is interested can read.
But anyways, I started on 60mg of prednisone back in May 2010. It really did help my strength, and my CPK levels fell pretty consistently. Now, in January 2011, I am still feeling pretty strong.
My doctor put me on a schedule to taper down which would have me off the medication by November 2011.
I was in school at the time, makin' good grades, feeling pretty good, up early every morning, eating healthy, energetic. But I did start to notice that I was going through some pretty major moodswings. I would be really happy and excited about things, but then I would cry for no reason, or neurose over my problems, and wind up feeling depressed and hopeless. I asked my doctor about this, and she said that "Oh yeah, prednisone can cause moodswings, but don't worry about it."
I know some of y'all have had memory problems with prednisone... Well I was getting so incredibly confused that I really couldn't keep a good grasp on things. I would start to tell a story to a friend, and then realize that I had no idea who told me the story... or if it even happened... or if it were something I heard on TV or in a dream... On more than one occasion I dreamed that I completed a homework assignment, went to class the next morning, pulled out my homework and was absolutely shocked and confused upon seeing it unfinished. I would swear up and down that I worked on it for hours, I could see the finished product in my head, but there it was, incomplete. Naturally my grades started slipping....
My moods went from up and down to just down. I was seeing a therapist at my school (so glad they have psychiatric services), and he kept urging me to talk to my neurologist about the prednisone. Every time I did she reassured me that "Oh yeah you can get mood swings but don't worry about it." I was getting so confused by dreams that I couldn't remember what was actually happening anymore. I have always had very vivid kind of creepy dreams, but my dreams went from funny/disturbing/creepy to terrifying/morbid/violent. I had such a horrifying dream once I woke up in a panic and couldn't get out of bed because I couldn't shake the feeling. I got really paranoid; it was hard for me to relate to my friends because everything they said seemed like an attack. I assigned meaning to everything when there wasn't any, and could not reason with myself. It's like I had two brains, and the rational one could not talk the irrational one out of anything.
Then things took an even more extreme turn for the worse. I could not physically calm down. My body was always really tense. I would make myself lie down in the middle of the day and just try to calm down and breathe. I started seeing things out of the corner of my eye, and then I started seeing specifically mice and rats and bugs out of the corner of my eye. There was one night that I was working on a project, but I couldn't concentrate because I kept seeing a drawing I had done (of a woman's face) blinking at me. I wanted to turn the picture around, but was afraid that I would hurt its feelings (ridiculous, I know!). I made myself go to bed, and told myself to calm down, but I couldn't shake the feeling that the picture was looking at me... I'm not really sure if/when I did fall asleep but in the morning I got up and went immediately to my psychiatrist, who sent me to my parents' house, and withdrew me from school.
Since then I've tapered down but I am still on 30mg. No more hallucinations, but I am still dealing with serious mood swings. I am sure it is the prednisone. When I try to remember things that happened in the past few months, it's like trying to remember a dream. Really fuzzy and confusing.
I know this is long, awesome if you actually read it. I just wanted to put this out there so other people who have had to sacrifice their mental health for their physical health know that someone can relate...
-Okapi
But anyways, I started on 60mg of prednisone back in May 2010. It really did help my strength, and my CPK levels fell pretty consistently. Now, in January 2011, I am still feeling pretty strong.
My doctor put me on a schedule to taper down which would have me off the medication by November 2011.
I was in school at the time, makin' good grades, feeling pretty good, up early every morning, eating healthy, energetic. But I did start to notice that I was going through some pretty major moodswings. I would be really happy and excited about things, but then I would cry for no reason, or neurose over my problems, and wind up feeling depressed and hopeless. I asked my doctor about this, and she said that "Oh yeah, prednisone can cause moodswings, but don't worry about it."
I know some of y'all have had memory problems with prednisone... Well I was getting so incredibly confused that I really couldn't keep a good grasp on things. I would start to tell a story to a friend, and then realize that I had no idea who told me the story... or if it even happened... or if it were something I heard on TV or in a dream... On more than one occasion I dreamed that I completed a homework assignment, went to class the next morning, pulled out my homework and was absolutely shocked and confused upon seeing it unfinished. I would swear up and down that I worked on it for hours, I could see the finished product in my head, but there it was, incomplete. Naturally my grades started slipping....
My moods went from up and down to just down. I was seeing a therapist at my school (so glad they have psychiatric services), and he kept urging me to talk to my neurologist about the prednisone. Every time I did she reassured me that "Oh yeah you can get mood swings but don't worry about it." I was getting so confused by dreams that I couldn't remember what was actually happening anymore. I have always had very vivid kind of creepy dreams, but my dreams went from funny/disturbing/creepy to terrifying/morbid/violent. I had such a horrifying dream once I woke up in a panic and couldn't get out of bed because I couldn't shake the feeling. I got really paranoid; it was hard for me to relate to my friends because everything they said seemed like an attack. I assigned meaning to everything when there wasn't any, and could not reason with myself. It's like I had two brains, and the rational one could not talk the irrational one out of anything.
Then things took an even more extreme turn for the worse. I could not physically calm down. My body was always really tense. I would make myself lie down in the middle of the day and just try to calm down and breathe. I started seeing things out of the corner of my eye, and then I started seeing specifically mice and rats and bugs out of the corner of my eye. There was one night that I was working on a project, but I couldn't concentrate because I kept seeing a drawing I had done (of a woman's face) blinking at me. I wanted to turn the picture around, but was afraid that I would hurt its feelings (ridiculous, I know!). I made myself go to bed, and told myself to calm down, but I couldn't shake the feeling that the picture was looking at me... I'm not really sure if/when I did fall asleep but in the morning I got up and went immediately to my psychiatrist, who sent me to my parents' house, and withdrew me from school.
Since then I've tapered down but I am still on 30mg. No more hallucinations, but I am still dealing with serious mood swings. I am sure it is the prednisone. When I try to remember things that happened in the past few months, it's like trying to remember a dream. Really fuzzy and confusing.
I know this is long, awesome if you actually read it. I just wanted to put this out there so other people who have had to sacrifice their mental health for their physical health know that someone can relate...
-Okapi
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