Daily Life | IBD | Side Effects
Emily in Cape Cod, Massachusetts.
Prednisone: We love to hate it and hate to love it. I’ve been on it since around December 2022, making this 2.5 years since being on it. I’ve experienced the many ups and downs of the Prednisone journey. Let’s talk about that journey.
Prednisone is a steroid medication. It treats conditions like inflammatory bowel disease, asthma, allergic reactions, arthritis, and blood or bone marrow conditions. Prednisone helps to decrease inflammation. It slows down an overactive immune system and it replaces cortisol, which is a hormone that helps your body’s response to illness, stress, and injury.
I was originally put on Prednisone in December 2022 after we learned that the biologic I had been on for six years stopped being effective. I was in a flare and needed new medication to manage my Crohn’s disease. After attempting the new biologic for a couple of months, a colonoscopy showed that things were worse than we thought. I was admitted to the hospital immediately where I received my first Methylprednisolone IV infusion, which was 40 milligrams. I left the hospital with directions from my doctor to stay on Prednisone (a lower dose than the IV) while we worked to find another biologic.
Time came and went. I didn’t start my new biologic until April 2023. At this point, I was trying to suffer through my last semester of college and student teaching. My doctor let me stay on Prednisone to get through it and I was at 20 milligrams for weeks. My next hospitalization was in May 2023, where I received 40 milligrams of Methylprednisolone through IVs again. The plan was to leave the hospital again on 40 milligrams of Prednisone and slowly taper off.
Again, time came and went. I was hospitalized again in July 2023. Any time I tried to taper down, my body couldn’t take it, and I had to be hospitalized again with 40 milligrams of Methylprednisolone. My doctor decided that my third biologic wasn’t working and started me on a new one. The new one helped some, but my body was still dependent on Prednisone. I got a new doctor (nothing against my old one but she suggested I find someone else as she had done everything she could for me) and had a colonoscopy in June 2024. I was put on yet another new medication that this new doctor thought would work better. This time it was a JAK inhibitor. The JAK inhibitor has helped my inflammation come down significantly, and my numbers all look great, but I’m still dependent on Prednisone to this day.
Stretch marks on Emily’s arm caused by Cushing syndrome.
Side effects include: allergic reactions, high blood pressure, increased thirst or amount of urine, unusual weakness or fatigue, blurry vision, infection, low adrenal gland function (nausea, vomiting, loss of appetite, unusual weakness, fatigue, dizziness), mood and behavior changes (anxiety, nervousness, confusion, irritability, feelings of depression), stomach bleeding, swelling of ankles, hands, or feet, acne, headaches, increase in appetite, trouble sleeping, and weight gain. Another side effect is Cushing syndrome, which makes your body have increased fat around your upper back, neck, face, or midsection. Pink or purple stretch marks appear on the skin around your arms, stomach, and under or on your breasts. It thins your skin. Your skin can become easily bruised and you might have unexpected hair growth.
Lucky for me, since I’ve been dependent on this drug for so long, I’ve experienced several of these side effects. It came to our attention during my July 2023 hospitalization that I had adrenal insufficiency, meaning that my adrenal glands aren’t working properly anymore. I’ve been working with an Endocrinologist ever since to try to taper off Prednisone. I have also been diagnosed with Cushing syndrome. I have pink and purple stretch marks on my under arms, stomach, and breasts. I have gained a lot of fat in my midsection, and I bruise very easily. I find random bruises on me all the time. Of course, I also experienced increased appetite being on such a high dosage for so long, so I gained a lot of weight, which probably added to the Cushing syndrome midsection weight gain.
It sucks that I have all these complicated side effects from the steroid. Tapering off has been a horrible process. I am at 9 milligrams right now which is a huge step down from the 40 milligrams I’m used to. But this process has been agonizing. I have to taper 1 milligram every month or more because my body can’t take it. It’s a very frustrating process trying to get off these steroids. I will go down 1 milligram, be too sick, and must go back up. I’m having symptoms that simply wouldn’t exist right now if I weren’t tapering. My Endocrinologist told me it is like I am a drug addict suffering from withdrawal… and I believe it. Although my inflammation levels are almost at normal, I’m extremely sick. I’m so fatigued and weak. My joints feel like they’re about to break any second. I have a lot of diarrhea. I just don’t feel well at all. Everyone keeps telling me that when I get off Prednisone it’ll be better, but that’s still a long way away. I’m discouraged, sad, and frustrated. However, if it weren’t for Prednisone, I’m certain I would have lost my colon in 2023, something that I never want to happen. It helped me get a lot better and every time I went into the hospital, I knew I would feel better once I got that IV dripping with Methylprednisolone into my system.
Prednisone has been a brutal lifeline. It has marked my body and taken me through emotional torture. But I have to accept that this medication is both my safety net and my burden. This Prednisone rollercoaster has felt endless to me, and it’s still not over. I will still be tapering for months to come, and that feels like a daunting task to me. This withdrawal phase has been unforgiving, but with each milligram down, every small reduction, it’s a tiny victory in this long war. Although I’m still in the thick of it, I’m trying to hold on to hope. If you’re on this journey too, just know that you’re not alone. There is no easy way off of this drug, but with the right support, time, and care team, we can find our way to a life where Prednisone is no longer calling the shots.
Born and raised in Pennsylvania, Emily was diagnosed with severe Crohn’s Disease in 2016 at age 17. Being 25 now, she wants to help bring awareness to IBD. Emily is currently pursuing a master’s degree in Education. She currently works as a substitute teacher but her dream is to be a first grade teacher. Outside of working, she enjoys traveling, spending time with loved ones, and reading.
