The Medication I Hate But Can’t Live Without: Prednisone



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Steroids, corticosteroids, prednisone.*

Do these words strike terror in your heart? Or are you grateful beyond measure for their existence? Both? Then chances are you, or someone you love, has a chronic illness that is reversed or relieved by steroids.

I have been on and off steroids, prednisone, all my adult life. Ever since my mid-twenties I’ve had a tumultuous relationship with that medication.

Steroids are miracle drugs. A synthetic compound that mimics the hormone excreted by the adrenal glands, they rev up the nervous system, reduce inflammation and suppress the immune system. Short term use, for five days to a week, is not usually a problem. The problem is with longer term use, when they are as toxic as they are beneficial. In her article Steroids’ Miracle Comes With a Caveat, Jane E. Brody, wrote:

“…as with any powerful remedy, corticosteroids come with a downside: side effects that can sometimes be as serious as the ailments they are intended to treat.”

No joke.

The doctor who first put me on prednisone neglected to tell me about the down side of the drug. My father, also a physician, didn’t warn me either. I’m still mad at both of them for this lapse in judgment (which is inconvenient because they are both dead). All they had to do was tell me:

You need this drug to keep your kidneys functioning well. You are on a high dose but we intend to taper you off after a few months, slowly, to reduce risk of a relapse and complications. In the meantime look out for:

  • insomnia
  • agitation
  • hyper, even manic mood
  • depression
  • irritability
  • increased appetite
  • weight gain

In other words, expect to be a coo-coo-bird nut-case.

Totally oblivious, I went back to college where I lived alone in a little studio apartment (which sounds a lot cuter than it really was). On my first night I had a serious case of the heebee geebees. I felt like someone had injected a double espresso laced with Red Bull right into my bloodstream. By morning a million bugs were trying to worm their way into every pore of my skin. I seriously thought I was losing my mind. Frantic, I called my doctor who nonchalantly (God, I’m so mad) said, “Oh, that’s the prednisone. Relax, it will get better. Don’t change the dose, whatever you do.”

That was my first experience with prednisone and I’ve hated it and loved it ever since.

Without prednisone, many of us would be crippled, in agony, suffocating or dead. I’ve been able to live a functional life because of steroids but I’ve suffered from them, too.

Twice my body became dependent on the steroid which meant every time my doctor (a new one whom I adore with all my heart) tried to get me off my kidneys would relapse. That meant I was on prednisone for years. Brody wrote:

“Steroids taken orally for more than three months can have more profound and sometimes irreversible effects. Serious side effects are more likely when steroids are taken in high doses for a year or longer.” And what are those serious side effects?

more weight gain
high blood pressure
deteriorating bone mass
diabetes
thinning skin
muscle weakness
Fat deposits on the face (moon face), stomach, chest and upper back
cataracts
glaucoma
ulcers
heartburn
easy bruising
increased sweating
acne
heart disease
delayed wound healing
increased risk of infection

And all this is in addition to the first list (see above)!!!

Many of us take medications to treat the side effects of the prednisone. Ambien to sleep, a hypertensive for blood pressure, immunizations to boost the immune system, Prilosec for the heartburn, calcium and iron supplements to reduce bone reduction. We need to test our bone density, eye pressure, skin integrity often to make sure they are breaking down. We avoid salt, coffee, any stimulant, alcohol or activities that risk injury.

One thing Brody does not address in her article is the stress this drug puts on the self-esteem of the individual and the well-being of their relationships. Of all the side effects, the ones that got to me most were the
psychological ones. Many times I had to apologize to my husband and
kids because of prednisone fueled fire-breathing tantrums. I hated not
recognizing myself, physically or emotionally.

If you love someone who is taking steroids try to understand everything you can about this drug and its effects on your loved one. I asked my husband how he would advise people married to someone taking prednisone long term. “Provide a wide berth and tread lightly,” he said. Doesn’t sound good, but there you go. If both of you can grasp the psychic pressure of being on a drug that basically keeps your nervous system on high alert without let up, distorts your features and weakens your body, hopefully you can provide a cushion of patience for each other.

It’s a long story I won’t bore you with now (I’ll save it for later)
but eventually I got off the steroids, and have been blessedly off for
over two years now. Compassion for my fellow chronic illness wranglers
who have to take this wonderful/horrible drug is infinite.

If you are on high doses of prednisone, getting off it would be
dangerous (unless guided closely by the prescribing physician) but maybe you could talk to your doctor about possible
alternatives, even experimental options. Try to get the dosage down as
low as possible. Take care to check yourself physically as needed and
if you are having trouble coping, talk with a counselor who understands.

There is so much to say on this topic. This article is for all of you out there on prednisone or any other powerful medication that would just as soon knock you down as heal you. Those on chemotherapy know. I was on chemo once but personally my worst experience with prescribed drugs was with prednisone so that’s why I focused on it. Still I imagine there are similarities in our experiences. I would love to hear from you all. Please leave a comment and share your story.

Related posts:

The Chronic Illness Wrangler
How to Have a Chronic Illness so it Doesn’t Have You
Tips to Find a Good Enough Doctor

*Corticosteroids, of which prednisone is the common trade name, are not to be confused with anabolic steroids used by some very stupid athletes inadvisedly.

Photo courtesy yourfavoritemartian via Flickr

11 comments


  • Indeed, diabetes can be a side effect of using steroids.
    Sam Nisbett

    2010/05/20
  • When I was on steroids I had to be tested for all the potential side effects every few months or so. Thank God I was lucky enough to avoid the ones I feared the most, diabetes and bone deterioration.

    2010/06/07
  • Kim

    I have now been on prednisone for six years and yes I am one of those people that would probably not be here without it..your article is the best I have read to describe the use of this drug from the benefits to the side effects…I have been on 100 mgs per day down to 12 mgs. per day..I have been fortunate not to have any of the terrible side effects that some persons experience. Thanks for all the great information on your site..everything I read it makes me feel like someone really understands.. :)

    2012/03/27
    • Hi, Kim! Thanks so much for your comment! I am so glad you have not had the worst side effects of being on prednisone. I wish I could say the same :-/ At this time my dose is going down so I do feel more calm, more in control, a very good thing. Now to lose all the extra weight I put on…

      2012/04/11
  • Gordon

    Great post. I have Auro Immune Hemolytic Anemia and are taking 85 mg a day of this magic P drug. I have almost every side effect except for hives and the round face. Double edged sword – it saved my life but its very hard on the body. I was on it 3 years ago for 7 months and now i am on it for at least another 5-6. If i dont take it, my heoglobin level drops below 60 and i go blind, cant catch my breath and lose use of my right side of my body including the ability to go the bathroom and keep my kidneys and liver working. So you are correct….the side effects are brutal. But staying alive for my wife and kids is critical as well.

    2015/11/14
  • I feel terrific on prednisone. I feel clear headed; no pains; not depressed; energetic and interested in things. I am wondering if my body makes cortisol at all? Is there any “natural” supplement/ hormone that would do the same for me without the side effects? I just tapered from 5 mg a day to 4 mg and I started to feel the difference right away. I am very tired and the joint and back pains are back.
    Lowering by 1mg made this difference!! Thanks for any guidance. BJ

    2015/12/19
    • Linda

      Weaning off Prednisone once you get down to 15 or 10 and lower is very tricky. It must be done very slowly in small. amounts as your body starts working at producing its own cortisol again. If you hurry the weaning and your body isn’t ready you can have an adrenal crisis and go into shock. The tortoise really wins this race.

      2016/02/26
      • Indeed, being patient and following the dosage prescribed by your doctor is essential. Both can be a big challenge for some of us. It helped me a great deal to have a very good, trusting relationship with my doctor.

        2016/05/03
  • Kari

    I am currently on 20 mg of Prednisone – I have Ulcerative Colitis/Crohns and recently had a bad flare that ended me up in the hospital for a week while out-of-town. In the hospital I was on 40 mg and they had me decrease the dose to 30 after a week and then to 20 mg. I finally got back home and in to my GI who said I was decreasing too quickly and wanted me back on 30 mg which brought on a crying spell. He agreed to allow me to stay on 20 mg as long as I keep making progress and stick to other medication and probiotic regimen. I’ve had this disease for 30 plus years. In college I was on steroids for the first time and experienced the moon face and facial hair much to my surprise. I haven’t had problems that require steroid use for over ten years. I had forgotten how horrible I felt on Prednisone. I experience every side effect, but the emotional roller coaster and lack of sleep have been the worst. I have NO FILTER – I say whatever I’m feeling when I get angry or upset and cry at the drop of the hat. I hate this for my family. I am cleaning house like a crazy woman which my husband interprets as, “You’re not sick – you can’t sit still!” Oh, how I want to sit still! I only sleep 3-5 hours a night. My muscle mass has turned to mush and I have a belly on me when I’ve always had a fairly flat stomach. Add to this the fat face and I am just feeling pretty much blah about myself. But, the steroids are turning around my colitis. Such a great drug for the good it does while it wreaks havoc on the rest of my entire life. I pray I don’t get diabetes or glaucoma/cataracts – that’s my biggest fear. I do eat all the time. I don’t crave sweets, but am limited to a low fiber/low-residue diet which doesn’t leave a lot of options – no fresh vegetables/fruit, no milk products, nuts, seeds, caffeine, carbonation. I’m getting rather bored with the same foods. Thanks for providing a place for me to rant. It’s almost 5 a.m. and I’ve been up since 3! Almost time to start making breakfast for my family and get my daughter off to school – more cleaning out of closets!!!!

    2016/01/06
  • Dinah

    I was on prednisone for nearly four years, as a treatment for Giant Cell Arteritis, which can make you go suddenly blind and/or morph into Polymyalgia Rheumatica, and cause much pain. Under the circs, the steroids seemed a great choice. However I did get many adverse effects, including cataracts and damaged sight in one eye, and thinned muscles, tendons, and skin. I also had that horrible sense of not owning my body any longer.
    Anyway, I discovered Uncaria tomentosa a popular South American anti-inflammatory that has been drawing a lot of research interest. It has allowed me to get right off the steroids (after a long gradual withdrawal); if I remember to take my 3x300mg capsules I rarely have any symptoms of the GCA (which lurked right through the years of steroids too); a couple of times I’ve been able to deal with flare-ups by slightly increasing the Uncaria and dosing myself with several low dose enteric coated aspirins.

    2016/01/29
  • Amy

    I am currently on 60mg/day Prednisone and slowly tapering off to treat chronic hives. It is the only thing that gives me relief but the side effects are terrible. It’s funny to me that hives can be one of them. I experience crazy energy and focus during the day and awful insomnia at night, mood swings, and my body temperature fluctuates a lot. Very annoying, but less annoying than constantly being covered in an itchy rash with an unknown cause. I love to hate Prednisone.

    2016/09/28

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