Monday, December 24, 2007

Prednisone: Committing Suicide

Prednisone is one of the most complex drugs I know. I could write about it a hundred times, or think about it everyday like I do, to try to make sense of it for myself, so I can make sense of it to those who haven't experienced it on a long term basis, but it doesn't seem to help. But that doesn't mean I am not going to keep trying.

Prednisone for a prolonged use at higher doses, above 10 mg, is like committing suicide slowly. It will cause problems and take decades (plural) off your life. If you take high doses for a long time it will cause serious complications to organs and then kill you if you keep it up. Guess what? I have been on it for three years. Anywhere from .5 mg to 80 or 100 mg. Right now I have to go from 8 mg to 10 because life is hard. I am scared.

So yes, it helps me. It reduces inflammation and pain and gives me a false sense of energy. So that is good. It helps so many people all the time, in ways in helps me and in many other ways. It can help with allergies too. All kinds of things. It even saved my life, literally. Without Prednisone I would have died, but with it for too long and I will die. So Prednisone and I have mixed feelings.

I am telling you it is good because that is what makes deciding what dose to be on so difficult. I could be on maybe 40-50 mg right now and be able to go to school, be able to have a job, my dream job. But how many years of my life would I be sacrificing. I play the scales all the time. And when I decided to drop my dream job, when I decided to drop out of college, this was because I was lowering predisone to save my life, in the long run and in different ways.

Short term long run if I flare again and things get bad Prednisone is the only thing that will save me, literally possibly save my life from the imflammation that could surround my heart and lungs again. If I am on 40-50 mg and I flare, how much higher will the dose be in order for it to work--too high people! Too much of a risk there, and then you have the scary complications. So school, a job, it just isn't worth the risks involved with Prednisone, and Prednisone is the only way I can feel healthy enough to do those things. So I appreciate everyone wanting me to go back to school or thinking that I can suck it up, and you know what you are right, but it comes at a price, a very high price, and one I have decided I am not going to pay. And I need you to take a very deep look at yourself and think if you would risk higher doses of prednisone just to attempt to be normal. Would you? Would you commit suicide slowly, for a job, for school? I hope you wouldn't. I am telling you it is not worth it!

I haven't even mentioned other side effects I have experienced from higher doses. Acne, all over. Increased appetite. Weight gain. Sweaty all the time. Hands sweat. Less sleep because it is a steroid. I am a girl, it messes with my menstration cycle. It plays with your emotions. Your body craves it and doesn't know what to do when you miss a dose or have to lower it. You feel literally like hell when you try to lower it just a little bit. Like there is a whithdrawal and you got hit by a semi-truck. When I lower just a couple mgs at a time I become aware of every single joint in my feet, my ankes, and my hands at first. Then when I lower it even more, by back goes, every joint in my spine, then all over my body. It thirsts for it like I am stranded in a desert and it is fresh mountain ice water of an unlimited supply. I am sure there is more, but I think I have proved my point:
You don't know me. You don't know my disease. You don't know Prednisone. You don't know my life. You don't know why I quit my dream job. You don't know why I dropped out of school. You don't know my fears of daily experiences. You don't know much of anything. You don't know what it is like to need steroids. You don't know what it is like to know you are taking decades off of your life and to imagine how much shorter life would be if you were still in school and it scares reality into you. But now, now maybe you know a little more. God and I can only hope.




Here is an earlier version I wrote:

Many people used to be able to see an almost normal, healthy, and happy me. I was working close to full time in a vigorous, demanding, and exhausting job, while going to school fulltime. What they don't is that it was all an act. The real problems and daily struggles were masked behind my stubborness and more importantly masked behind a horrible drug called Prednisone.

Prednisone had at one point saved my life, but I soon was forced to learn that it could end it as well.

I started medicinal steroids (prednisone) Nov. 2004 to reduce inflammation from AOSD. I have not been able to come off of them since.

I tried twice, and I went to the ER twice, and one of those trips led to hospitalization.

You see, being on Prednisone for a long period of time is very dangerous. There are life threatening consequences that I have been forced to face. I knew back in Sept. 2005 that I was not going to continue the risk of those consequences. I knew I had to change things around in hope of a healthier future. I gave up my life then (working, my dream job, school, any sense of normalcy) so that I had hope for later. Dropping out of school, and then being able to lower my dose of Prednisone has added years to my life. But this is not the end.

I am only 20 years old now and will battle with Prednisone for the rest of my life. I may never come off of it completely and that is a very scary thing to think about. People hear AOSD and they only think of arthritis. It is so much more than that. There are mental, emotional, spiritual battles every second of the day. On top of all of that there are the millions of medications we are on and will be on for too many years. Medicines help people, but they are usually only used for a short period of time.

When you lengthen their use, especially for 10, 20, 30+ years, the side effects from all the meds may become very dangerous. We not only worry about AOSD leading to an early death, we think about stress, secondary conditions, weakened immune systems, and side effects of these medications being the cause of an early death. There are so many demons associated with conditions like Stills. It is so much more than anyone can ever know. Fears surround you from all directions. Sometimes letting go of the things we love now will be able to let us love something else for a little longer down the road.

5 comments:

Mare said...

I have been searching for some sort of answers on this drug as my partner of 16 years was on this drug and only got 4 pills in her and ended up taking her own life. I know she would of never done that, as she not only leaves me behind she left a beautiful daughter. Two days prior was planning daughters 16th birthday party. She was not on the the dose of one a day not sure the milligrams. I am working on trying to get guardianship there is just so much to do.

Jan said...

You're quite right, I don't know you or your disease, but my heart goes out to you. You are so young. Nobody your age should have to battle with this hellish drug.

I'm 40 years older than you and have suffered from severe persistent adult-onset asthma for the past seven years. And believe me, I know all about Prednisone.

Your writing is very powerful but still a lot of people will be inclined to dismiss your problem and to consider you neurotic or insufficiently 'positive' in your attitude. It's a blinkered response but natural enough, I suppose. You're taking them out of their comfort zone. I would like them to consider though how they would like to be dependent on a drug with the following side effects, ranging from dead certainty to % increased risk.

Nervousness, acne, rash, increased appetite, hyperactivity, frequent urination, diarrhea, removes intestinal flora, leg pain/cramps, sensitive teeth, high blood glucose levels, fluid retention, insomnia, euphoria, and (rarely) mania.
Also type II diabetes mellitus, general weight gain, truncal weight gain, facial swelling, depression, mania, psychosis or other psychiatric symptoms, unusual fatigue or weakness, mental confusion / indecisiveness, blurred vision, abdominal pain, peptic ulcer, infections, painful hips or shoulders, steroid-induced osteoporosis, osteonecrosis, headache, long-term migraines, insomnia, severe joint pain, cataracts or glaucoma, anxiety, black stool, stomach pain or bloating, severe swelling, mouth sores or dry mouth, avascular necrosis, hepatic steatosis, Cushing's syndrome, muscle weakness, potassium loss, high-blood pressure, thin skin (bruising and slow healing), seizure, adrenal unresponsiveness/failure, congestive heart failure, stroke.

It's a long list. Did you read to the end, people? Or did you get bored half way through?

hannah said...

Hello,
Your story is very powerful. I am close to being the same age as you (21) and I feel as though our experiences with this drug have been very similar. Prednisone is a horrible horrible drug; this statement cannot be over- exaggerated. Ever since I've been off it, I have been entertaining suicidal thoughts. I guess all I really want to say is do not give in to these thoughts. Do not let them get the best of you and cause you to take your life. I've come close countless times now but no matter how hard it gets, please please please remember that it will get better!

hannah said...

Hello,
Your story is very powerful. I am close to being the same age as you (21) and I feel as though our experiences with this drug have been very similar. Prednisone is a horrible horrible drug; this statement cannot be over- exaggerated. Ever since I've been off it, I have been entertaining suicidal thoughts. I guess all I really want to say is do not give in to these thoughts. Do not let them get the best of you and cause you to take your life. I've come close countless times now but no matter how hard it gets, please please please remember that it will get better!

Laura Presant said...

My perfectly healthy mother, at the age of 78, came down with Temporal Arteritis, an autoimmune disease and a form of vasculitis. She was put on 80mg of prednisone a day and the doctors could not bring down the dosage for fear of the vasculitis going through her whole body. She was dead seven months later. It wasn't the Temporal Arteritis that killed her, it was the prednisone. She ended up with double lung pneumonia. Even now I wonder if is was really pneumonia or the vasculitis entering her lungs which looks very similar to pneumonia, or so I have read on the internet. This all happened over four years ago and I still feel guilty, like I should have been able to do more.

Her neurologist told me that prednisone will make a person psychotic. I know that with my mother she would get big open sores on her arms and legs because her skin had become so thin.

Steroids can be a life saver but too much for too long will kill you.