I Had a Negative Experience While Tapering Off Prednisone Quickly
I have a love-hate relationship with the corticosteroid prednisone. After I was diagnosed with myasthenia gravis (MG) in 2011, prednisone gave me back my strength almost instantly. It was like a miracle, and I was extremely grateful. But I never expected the side effects that came with it.
Before prednisone, I hadn’t experienced many side effects from medications, and I didn’t think this would be any different. The joke was on me, though, because I ended up gaining over 30 pounds, I often sweated profusely, I had bad facial acne, and I had trouble sleeping. Although I couldn’t stand the side effects, I dealt with them because prednisone was the only thing that helped the weakness caused by MG.
About a year after I started taking it, along with my other medications, my doctor said I was doing well enough to start tapering off. I felt relieved and excited at the news. I would finally stop being a sweaty human with acne that looked like a beard.
The plan was to taper me from 80 mg a day to zero, so, I decreased my dosage by 20 mg every two weeks. I knew I might experience weakness while tapering, but I was too happy to worry about it.
As it turns out, it appears I had a negative reaction to lowering the dosage too quickly. (Interestingly, a study published earlier this year found that rapid tapering of high-dose prednisone appeared to be safe.) In my case, as I decreased the dosage, I ignored the weakness I started to feel, either because of my determination to stop taking the drug or my own ignorance. Although I was worsening, I talked myself into believing the weakness was a normal side effect of tapering.
But it felt like with every 20 mg I removed from my dosage, my remaining strength was sucked out of my body. When I got to the point that I could no longer go to the bathroom without assistance, I knew something was wrong.
My body wasn’t ready to go entirely without prednisone. The situation worsened until I eventually had to be rushed to the hospital in an ambulance and put on intravenous immunoglobulin therapy, an experience I found embarrassing. Although I knew tapering wouldn’t be easy, I never thought I’d end up in the hospital for two weeks.
That hospital stay was a life-changing moment for me. I suffered a myasthenic crisis that set my recovery back immensely. I ended up being intubated because of the crisis, which led to post-traumatic stress disorder and ongoing anxiety. My doctor had no choice but to increase my prednisone dosage back up to 80 mg a day so that my body could rest and heal.
After everything I had gone through to lower my prednisone dosage, I was right back where I started when I left the hospital.
My eagerness and determination to get better had trumped my own common sense. I should have immediately told my doctor when I first began to feel weak while tapering. Trying to rush things can lead to major health setbacks.
I know we all want to solve our problems as quickly as possible, but speed doesn’t always result in success. In fact, after that experience, I’ll take acne and sweat over a two-week hospitalization anytime.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.