Prednisone, Surgeries, Vegas, Oh My!

I like to think of myself as a holistic person. If there is a natural remedy for an issue I experience, I prefer that to any pharmaceutical drug on the market. Unfortunately, my disease has progressed so rapidly and severely that I have been left with no choice but to jump on the dreaded bandwagon of the despised drug that is Prednisone.

Back in 2012, I tried the steroid for the first time in an attempt to combat a flare. I resisted Prednisone up until that point because of all the side effects and horror stories I had read online and in medical journals: insomnia, agitation, increased sweating, acne, insatiable hunger, weight gain, moon face, mood changes, dry skin, decreased immunity, and the list goes on. My pediatric gastroenterologist at that time was insistent on the idea of me giving the drug a chance, as it is the first line of defense when a Crohn’s Disease patient is experiencing increased disease activity.

Hesitantly, I agreed to start out on a moderate dose of 40mg daily. Long story short, I did not feel like myself on the drug and within a few days I ended up in the hospital for recurring episodes of syncope (I would more or less pass out every time I stood up) and extremely low blood pressure. Needless to say, I steered clear of Prednisone for as long as I could after that experience.

Flash forward to December of 2015 and I am faced with the dreaded decision again: take Prednisone to alleviate my severe symptoms or resist the treatment and hope for the best. I had already tried Entocort (a steroid loosely comparable to Prednisone that does not cause the dreaded systemic side effects) to no avail, and my flare was worsening daily.

At this time, the Erythema Nodosum on my legs was so severe that I flew home early from my family vacation. I could not walk and was running a 103 degree fever; my gastroenterologist immediately admitted me as an inpatient to the hospital. In consideration of the numerous recommendations from multiple doctors on my medical team, I conceded to their suggestion and started an intravenous course of steroids on New Year’s Eve of 2015. Thankfully, within less than forty-eight hours my legs were significantly less swollen and painful, and my fever had broken.

After a week in the hospital taking prednisone intravenously, I was discharged and instructed to follow a five-week steroid taper starting at 40mg daily. Because I had not experienced any severe side effects while on IV Prednisone (much more powerful than the oral dose I would be taking at home), I was hopeful that maybe it was a miracle drug after all. I could live with the night sweats, insomnia and mood swings it caused, so long as my flare was controlled. I chalked up my experience in 2012 to be a fluke and was optimistic about coming out of this flare in no time!

By the end of January I was in the hospital again, this time for emergency surgery to remove an abscess. I was running a high fever and was in extreme amounts of pain. I suspected that the abscess had formed because of the Prednisone (I did a lot of research on the comorbidity of abscesses/fistulas and immunosuppression relating to corticosteroids), but this could not be confirmed by my doctor or surgeon because abscesses can occur as a result of Crohn’s Disease in itself.

I recovered quickly from that surgery and maintained on Humira injections after the Prednisone taper finally ended. My typical disease symptoms (stomach pain, fevers, joint pain, fatigue, rectal bleeding, urgency to go to the bathroom, etc.) were not fully under control, but I was better off than where I was back in December and January. As I was approaching the end of my final semester in college, I was optimistic that I would be in remission by the time I graduated; unfortunately, that is not exactly what happened.

I finished my courses, took my finals, and ended the semester with a 4.0 GPA. To celebrate my accomplishment of graduating, my parents took me on an amazing vacation to Las Vegas. After having to leave my family vacation in December because of my flare, I was nervous that I would get sick again and have my trip ruined. Leading up to Vegas, I was in okay health and convinced myself to push any doubtful thoughts out of my mind.

My vacation with my parents was full of fun and excitement. Anyone who knows me personally knows that my parents are my best friends and favorite people and I always have the best time when I am with them. I did not have a great year as a 21-year-old in light of my ongoing flare and multiple hospitalizations, so I was ready to make up for lost time on vacation. I gambled for the first time (ended up winning- yay!), went to night clubs for the first time (and the VIP opening of Jewel at the Aria), and even enjoyed a few alcoholic beverages (I am not a huge drinker, but I was in Vegas so of course some I had to seize the moment).

By the third day of the trip, I could not walk. I initially thought that I had pulled a bunch of muscles in my legs from walking around so much in heels and over-exercising. After a few days of worsening pain, I realized that I had a bigger problem on my hands: my Erythema Nodosum had returned, worse than before. What had happened to my body in Vegas was unfortunately not something that could stay in Vegas. 

I came home from Vegas and immediately started Prednisone. Within two days, I could walk without pain again. The only side effects I was experiencing from the steroid were insomnia and the occasional sad mood. My legs cleared up pretty well and I was back to my regular routine in no time.
But not so fast. Two weeks later I suspected that I had developed another abscess and this time, a fistula as well. And to top things off, I was supposed to start graduate school (I am earning my master’s degree in accounting) that week. I scheduled urgent appointments with my GI and my surgeon who both confirmed my suspicion. I was booked for surgery the next day.

I will write about that experience at a later time, but for right now, the takeaway is that immediately after taking Prednisone I developed an abscess, just as it happened in January, and this time with a fistula as well. My surgeon agreed that the Prednisone is what caused the abscess and new fistula to appear. Not great news.

Moreover, because I was having surgery, I had to delay my Humira injection, which I suspect caused my Erythema Nodosum to reappear later that week. This was the fourth time I had experienced it and the pain was so awful that it woke me up at night. Each day the pain and swelling got worse until I could not walk and my doctor admitted me to the hospital to start IV steroids yet again.
Within a day on the IV steroids, my legs were significantly less painful and swollen and I was able to function again. I was discharged on a 40mg taper of Prednisone. (It was also at this time that I increased my Humira injections to a weekly dose and added in Azathioprine as a maintenance medication.)
My awesome sister Lauren always makes me 'Welcome Home' signs after a hospital stay <3.

As of today, I am down to 25mg daily on my steroid taper and mercilessly hoping that the pattern of Prednisone-abscess-surgery does not recur. The unpredictability of my disease is what hits the hardest for me because I know that tomorrow I could wake up to notice an abscess or fistula and my life will be turned upside down. This plays into the concept of involuntarily living in the moment that I wrote about here.

On this taper of Prednisone, I am really feeling the side effects: I cannot fall asleep or stay asleep at night; my hands shake a few hours after taking my dose in the morning; I am getting zits on my forehead (I normally have perfectly clear skin); I am extra thirsty; my energy levels are either extremely high or too low to function. With each step down on the taper, these side effects change, and all I can do is hope that they stay manageable.

It is saddening to me that there is not a better treatment option for Crohn’s Disease when a patient is having a flare. Maintenance medications are great for maintaining remission, but getting to that point has been a struggle for me. With an increased focus on my health and nutrition as well as an increase in Humira dosing and the addition of Azathioprine, I hope that I will not need to take Prednisone again anytime in the foreseeable future. For now, I will maintain a positive attitude and stay optimistic that this taper will not result in another surgery.


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