The Up-and-Down, Up-and-Down Dance of Prednisone
If you are lucky, you may need only one of these or a combination of these. If you are like me, I have tried them all, either separately or in combination over my 35 years with Crohn's. But steroids are a love-hate relationship. In my case, prednisone was my doctor's drug of choice and I spent nearly 24 years on it.
Prednisone was the first drug I took for Crohn's
It took 6 months to get a diagnosis, but as soon as my GP diagnosed me – and before I ever saw a gastroenterologist – I was started on a course of high-dose prednisone and sulfasalazine to help with the inflammation. This was followed by a combination of drugs over the years but always included prednisone. I did not stop taking prednisone until I started biologics.
I remember when my doctor first told me that I was to start steroids, the first thought I had was of anabolic steroids and the horror stories I had heard over the years. I remember my doctor laughing and said that prednisone was not going to get me "jacked" so I had nothing to worry about as far as that was concerned. But prednisone had many side effects I needed to know about, including headaches, agitation, aggression, irritability, and weight gain,just to mention a few.
My pain was worse than the side effects
I did not care at the time because I was losing so much weight fast, and if this drug could help with the intense pain as well as put on weight, I would take anything at that point.
The main reason for taking it was to decrease inflammation in my intestines, thus helping relieve the pain. The weight gain never happened for me. Little did I know at the time that prednisone would become my main medication for over 2 decades.
So the question was, would prednisone be my friend? Or would prednisone be my foe?
Titrating up, tapering down... And definitely dependent on prednisone
I was started on a high dose, 50 mg per day, for many months before being tapered down by 5 mg every 2 days for a week, and then another 5 mg each week until we found the "sweet spot" where the pain was manageable. I do not think we ever found that sweet spot until many, many years later and after multiple resections.
I was maintained on 5 to 10 mg every day for years and my gastroenterologist allowed me to titrate up or down as I needed based on my pain levels and Crohn's symptoms. I did not have to see her first. If I felt my Crohn's was worsening, I would up the milligrams, but if I was feeling "good" another day, I would lower it back down, tapering by 5 mg each week until I maintained on 5 mg each day.
Prednisone and I played this dance for 24 years until I started biologics. I have been off prednisone since 2012.
Some with Crohn's and UC have horrible side effects
I know many people have experienced side effects from prednisone, but for me, I was lucky and did not have many. Except maybe irritability, but was that from the drug or the fact I was suffering from my Crohn's? I guess I will never know.
I never experienced "moon face" (puffing and swelling of the face) which I know many people do. I did however have to have a bone density test every 2 years to check for bone loss and possible osteoporosis.
Bone density and prednisone
Crohn's already limited my vitamin D and calcium, and then long-term steroid use made it worse.
Luckily, I never broke any bones from lack of bone density, but I did need to attend hospital to get this test. In the early days of my journey, the test took hours, but then new technology brought this test down to mere minutes.
I hated being dependent... But I needed steroids
I hated having to take prednisone every day for so so long, high doses at time and titrating up and down, up and down. But I often wonder how my Crohn's journey would have been without it. I am guessing worse – much worse. So, for me, is prednisone friend or foe? Friend, definitely friend. And I am thankful for it. How about you?
How open are you about being diagnosed with IBD?