A love/hate affair with steroids is over

A love hate affair with steroids is overThis blog has been revised as it contained information that was interpreted by some as providing more than personal experience with a specific drug. CreakyJoints Bloggers are encouraged to write about personal experiences, but cannot recommend what others should do or tell them how they will react to a drug. Decisions about treatment must be between a patient and physician. Everyone is different and reacts differently to treatment. To prevent the blog posting from being interpreted as her providing medical advice, Ms. Schwab asked  Dr. Peter A. Nigrovic at the Harvard Medical School for his opinion.

For more information on Prednisone and for those interested in the viewpoints of other CreakyJoints Bloggers on the drug, go to our CJ Hot Topic: www.creakyjoints.org/content/cj-hot-topic-prednisone

ChristineTVI have taken a lot of Prednisone, a corticosteroid—or as I and many refer to it, *steroids—in my twenty-four year RA journey. A lot. In pill form or IV, this drug has saved many a day for me. When I had a TV segment to do and I was in constant pain, steroids. When I had to attend the Oscars, The Grammys, or a studio event…steroids. For a 4:30 AM call time at a television studio when the cold of the dark early morning made my joints scream…steroids. When I had an extremely busy workday ahead of me and I couldn’t walk…steroids. My rheumatologist understood the pressure of my work and how it wasn’t a job where I could call in sick. He understood the reason I had to keep my RA secret in order to keep my Television career as a Fashion Reporter. He got the disease, the career and me. I was lucky to find a doctor who made it possible for me to keep going. And in every case, except one, I was able to perform or attend. Prednisone became my best friend. I loved the instant results.

The only time the drug failed me was at the Oscars when I was attending as a guest instead of a reporter. Great 8th row seats. The elite of Hollywood were filling the auditorium, the room ChristineDCabuzz with anticipation. All perfect except that my RA decided it was going to take over and take over it did. I could hardly sit still. The RA flare was in full swing and the Oscars hadn’t even started. RA was winning out over the steroids for the first time. I walked out of the theater as everyone else walked in. I had no choice. I went home and watched the show on TV in my sweats, feet up, relief in sight.  The only good thing that came from that evening was the title of my third book, Take Me Home From The Oscars. I opened the book with the story of having to walk away from my favorite Hollywood event.

So it’s easy to see why I thought of Prednisone as the trump card. RA acts out, and it is a life saver. Steroids win over RA. Yes I had read the side effects on the packaging, but for me, at the time, there was no other choice. Steroids would give me relief when nothing else could. When my other medications couldn’t fight the RA fight, steroids were the back up medication that would take over. And the good news for me was that the steroids were short term, just a Band-Aid to stop the bleeding.

ChristineMagCoverThen at one point short term use wasn’t enough; only long-term use could fight my RA battle. The good news was it worked. The bad news? I became an emotional wreck, ate everything in sight, gained 20 lbs. and had a puffy moon-shaped face. That’s when my fashion expertise went into overdrive. I could dress anyone 20 lbs. slimmer, now I was doing it for myself. I could get a different, angular haircut that would take away some of the roundness of my face. And when it came time to taper the steroids, my adrenaline gland wouldn’t cooperate, so week after week I had to be retested, waiting until I could taper off the steroids.  In the meantime I cleaned every cupboard, answered every e-mail and watched late, late, late shows on TV. I was very productive because I was up and going full speed at all times.

This felt like a good thing when I considered all I accomplished, but reality and side effects set in about halfway through my RA journey and eventually Prednisone turned out not to be a good thing for me long term. There were side effects I had not anticipated even though they were listed on the brochures as possibilities, like decreased bone density, an immune system that stopped protecting me and a roller coaster emotional state. Like many patients I didn’t concentrate on side effects because I was focused instead on the hope of feeling better. And in reality I understood that manufacturers are required to list every side effect that ever happened to anyone, so even reading about something as simple as aspirin could scare me off of medications that might in fact really help me.ChristineJAKIDS

So while I loved the immediate results from Prednisone, I now get nervous when a doctor says, “We’ll just put you on a little Prednisone.” I no longer look forward to the instant gratification. I know the real personality of this medication.  It’s the good and the bad all rolled into one.

My love affair with steroids is over. Like the lover often scorned, I know the downside.  I would rather try almost anything else and use steroids only as a last resort.  I now spend hours and dollars in the gym strengthening my weakened  bones with weight baring exercises like the treadmill, the bicycle and lifting light weights. My physical therapy consists of Pilates and a therapist manipulating  my joints to not only strengthen them but keep them flexible, all side effects from osteoporosis most likely brought on by my long steroid use.  And then there is the
time and money spent at my therapist’s dealing with over emotional responses to what should be easy issues.
ChristineJAGirlAs many of my readers are aware, I am an advocate for children with arthritis, and as such, the question of kids on Prednisone naturally comes to mind. I am only a patient and an advocate, not a doctor, so I went to one of the best, Dr. Peter A. Nigrovic at the Harvard Medical School. Dr. Nigrovic is an Assistant Professor of Medicine for Pediatric and Adult Rheumatology for his opinion about kids on steroids. “Steroids are sometimes a necessary evil, but they are never less than an evil.  With Systemic onset JRA, or using the current term systemic JIA, we use to have to ‘dip’ kids in steroids to get the disease down. Now with early use of anakinra, we can avoid steroids in many cases.”

(Here is a link to more about Anakinra. Please note: Dr. Nigrovic has no consulting or other relationship with the makers of anakinra.) ChristineJA BOYhttp://www.ncbi.nlm.nih.gov/pubmed/21280009).
My overall opinion, as a patient, advocate and writer?  Steroids might be your best friend one time and your worst enemy another. Will I ever fall in love with steroids again? Of course, when I am at my wit’s end and nothing else will work. Only this time I will go into this love affair with caution. This relationship could be detrimental to my long-term future.

NOTE: As for other drugs such as Methotrexate and biologics,  Christine will be addressing  their use for children and other pediatric rheumatology  issues in future articles on Christine Talks JA on CreakyJoints.

*Prednisone is NOT an anabolic steroid, the sort used by weightlifters to increase muscle mass

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