Prednisone: Friend or Foe?

I was first prescribed prednisone about a year after I was diagnosed with lupus. I was 18 years old and a freshman in college, when I began having pain and swelling in my joints, (at the time, mostly my hands). In addition to my other medications, my rheumatologist decided that a low dose of prednisone for a short period of time was just what I needed to get my symptoms under control.

The doc was right. My joints felt like they were back to normal and to top it off, I had this boost of energy! In no time, my flare was gone, I was off the prednisone and things were going good.

And then another flare hit. This time it was a little worse than the first and just like that, I was back to taking my good ol’ friend prednisone. 

Just like the first time, the prednisone worked its magic. I had to be on it a little longer than the first time but I figured that was to be expected since the flare was a little stronger this time. 

Despite the cocktail of medications I was taking to help stabilize my lupus symptoms, I seemed to be getting worse over the years. 

The initial low dose and short time period of prednisone no longer worked for me. I needed higher and higher doses and longer time on the medication for it to help my lupus symptoms that were only getting worse.

What began as a few short-term prescriptions of prednisone, turned into an 11-year necessity.

Prednisone Becomes That Clingy Friend: Switching to Long-Term Use

My rheumatologist no longer thought about prednisone as a short-term prescription and instead, it became just another permanent staple in my medicine cabinet. And this is where it stayed for 11 years. 

Instead of short periods of time where I’d go on and off prednisone, now when it came to prednisone, the only thing changing was my dosage. During my worst times, I was taking upwards of 40mg daily and during periods of maintenance, the average was only 5mg daily. 

I found my relationship with prednisone to be one of love and hate. If it wasn’t for the horrible side effects (especially those that come with chronic use), prednisone is the drug of choice I’d pick to treat my lupus.

When it comes to the symptoms that you can “feel” like joint pain, fatigue, pleurisy pains, I’ve found that the prednisone attacks it pretty quickly and sometimes in as little as a day (depending on the severity of a flare) I can feel that little boost of energy and the symptoms becoming just a little more bearable.

When Prednisone Turns to Foe

If Disney movies have taught me anything, it’s that nothing comes without a cost (just ask the Little Mermaid). 

At the same time, prednisone was working its magic, it was secretly wreaking havoc on my body. For me, that “help” came with insomnia, mood swings (I would get angry so quickly), cuts and bruises that took forever to heal, and eye infections.

But it didn’t end there. 

Because of my long-term use of the steroids, I was required to do bone density scans. By my early 20s, I had developed a condition typically not seen until after age 50—osteopenia (bone density loss that causes bones to become weaker and over time could develop into osteoporosis).

By my early 20s I had developed a condition typically not seen until after age 50 – osteopenia.

Beware the energy boost!

I feel that what I’m about to say, doesn’t apply to serious lupus flares and mostly applied to me when I was taking prednisone as part of my routine maintenance. 

Like I said earlier, I had a love-hate relationship with prednisone. While I was taking it, it clearly helped to ease my symptoms and would give me a boost of energy. This in turn, helped me to be able to do more normal things like housework, exercise, and socializing with friends. 

But as you can see, it comes with a cost. In addition to the side effects I talked about earlier, one of the trickiest things I found about taking prednisone was the energy boost.

Que?!

That’s right, the energy boost was one of the trickiest things to handle. Let me explain.

You know how sometimes you are really tired but for some reason, you have this crazy wild energy – but deep down you know it’s not real? 

That’s what being on prednisone can feel like. I had this energy boost but it was just fake. An illusion (or maybe it was more like borrowed energy that you have to pay interest on later). 

The reason it’s tricky is that I fell for it over and over. I would get this boost of energy and it felt GREAT. So what did I do? I tried to cram in all the things that I felt I’d been missing out on…. exercise, chores, errands, hanging out with friends and family. 

And then inevitably, I’d crash. The “high” was over and I had to come back to reality – the reality that I had lupus and that it wasn’t under control.

Each time it would happen (the boost of energy), I’d convince myself that this time it would be different. This time the energy was real or this time I wouldn’t push it too far. 

Yet each time I would just get caught up in the feeling, the feeling that I felt “normal.” So the vicious cycle repeated.

Goodbye Prednisone

With the blessing of my rheumatologist and the support of my family, after about 11 years of taking prednisone daily, I was finally able to taper off prednisone.

I didn’t just wake up one day and decide I was through with prednisone. It took about 2 years of ups and downs (physically and emotionally) to fully taper off it. To this day, I consider it one of my greatest lupus-related accomplishments.

To Take or Not to Take Prednisone?

As much as I’d like to say that I’ve said goodbye to prednisone forever, that’s not the case. Although I consider myself currently to be in remission and with my lupus under control, every now and then I do have to take a short-term dose of prednisone. And that’s ok (at least that’s what I keep trying to tell myself). 

It’s been almost 3 years since I tapered off the prednisone and in this time, I’ve needed my old friend 3 times (typically a low dose tapered off over a week). 

As I am writing this blog, today was actually the first day in over a year that I had to take prednisone (my inspiration for writing this post). 

I won’t lie, I didn’t see this coming and I struggled with the decision to start. 

I know that being in remission doesn’t mean I’m flare-free but for some reason, I kept putting it off and I felt like a failure for having to turn back to prednisone again. 

Sometimes I forget how far I’ve come and need to remember that there is nothing wrong with needing a little prednisone every once in a while. That it’s ok to reach out for help. 

I know that being in remission doesn’t mean I’m flare-free but for some reason, I kept putting it off and I felt like a failure for having to turn back to prednisone again. 

Keeping You In The Loop

So what do you think… is prednisone a friend or foe?
I’d love to hear about your experiences with prednisone. Did you have the same or different side effects? How long were you on it?

Leave a comment below or Contact Me.