As of today, I’ve been more than a month off of prednisone. The withdrawal process was utterly miserable. I wish I could tell you that I found easy ways to manage the horrors and discomforts, but really, the only thing I could do was put my head down and get through it.
After my first Remicade dose at the end of December, I had such a great initial reaction that my GI told me it was time to be done with prednisone. She’d been concerned over my increased symptoms on 45 mg while we were waiting for the Stelara to kick in. Once it was clear the Remicade was working, I started the gradual step down. I was directed to step down 5 mg every 7 days.
It was not an elegant process by any means, but the first few steps downs were better than the last few. My doctor would call them “well tolerated” which I suppose is fine, but really means that I had a flare of symptoms after 24 hours that lasted 2-4 days, and then eased off and I had maybe 2 days of feeling fine and normal before stepping down another 5 mg. By about 30 mg, I was struggling a little with feeling like I had the flu for a few days, plus all the diarrhea, bloating, urgency and abdominal pain. My brain fog and fatigue started coming back, pretty much the entire withdrawal process with little relief.
The step down from 25-20 mg was absolutely horrible. Within 24 hours I started feeling like I needed to scratch my skin off – not from itching, but from the sensation of my body trying to jump out of my skin. My hands shook all the time, and I couldn’t focus on anything. I couldn’t put words together for a large portion of my days. I felt nauseated and generally ill all the time, with muscle aching, insomnia, and lots of stomach pain. I couldn’t sleep, and I could barely feel coherent enough to talk. I kept loosing words and getting confused and so, so angry with myself, and everything around me.
I was in contact with my doctor frequently and she decided to bump up my maintenance Remicade interval from the planned 8 weeks to 6 weeks which definitely helped. Each time I’ve had the infusion, I’ve felt better within maybe 1-2 days max. The bloating, urgency, diarrhea and other miserable symptoms ease dramatically and I start feeling like I have a clearer head and more energy. Generally – Remicade makes me feel closer to myself.
Even in the midst of the withdrawal, Remicade definitely made a difference in my quality of life. But that small difference, and the brief 24-48 hour period of feeling closer to normal at the end of every taper interval was always temporary. It was self-inflicted torture to chop those pills in half and know that I was going to feel utterly disgusting again, right after I’d started feeling better.
Going from 10 down to 5 mg was another really really difficult step for me. I had heard from people that the lower the dose, the harder it would be to manage the step downs. It was generally true, though the intensity of the symptoms eased by about 5 mg. But I was continuing to have a return of digestive symptoms that concerned me. How was I supposed to tell if they were an increase of inflammation and a return of the Crohn’s flare? Or just a symptom of the withdrawal? It was incredibly stressful to wait and wonder, and the only way we were going to be able to tell was to just be patient and see if the symptoms resolved on their own as my body’s levels of prednisone titred down and leveled out.
I tried lots of different things to help me through the process. During the first few weeks I had the most muscle pain and full body shaking and spazzing. I took a lot of warm baths during that time – mostly to keep me away from my poor loved ones who took the brunt of my raging and yelling when the roid-rage manifested. During the hardest middle section when I couldn’t focus beyond the tip of my nose, I started to do puzzles. Giant 1000+ piece puzzles of extreme complexity. They were so incredibly helpful. I would sit at the table, shaking all over and bent in half with pain, and just focus on what was in front of me, sorting and looking, sorting and looking, and then matching and doing it all again. I had control over the puzzle – control that I didn’t have over my body or my emotions or my disease or my life. It was a type of moving and focused meditation that worked wonders for my mood and gave me something to do in the midst of those very dark and difficult days.
Towards the end of the step down, around 10 mg, I was exhausted and struggling. I emailed my doctor to see if I could go down 2 mg step downs rather than 5. But she wanted me off the steroid faster, since I’d been on it for so long. So she recommended the alternating day taper. 10 mg one day, 5 mg the next, then 10 then 5, and repeat for a week. I did that for the 10 to 5 and the 5 to zero tapers and it helped me hugely to control the excessive spiraling digestive symptoms. I would have a brief return of diarrhea and feeling ill for one day, and then it would ease as I stepped back up the dose intermittently. It took that escalation and stopped it. If I ever have to do another long term taper, I’ll ask if I can do alternate day switching from the very start – it was so much more successful for me.
I wish I had better advice or sage words of wisdom to pass on to you. Most people I’ve talked to that have been on prednisone long term were so happy to come off of it – they were eager for a taper. But I loved prednisone so much. It gave me back my energy and my sense of self. It stopped my disease and let the Remicade really start working. It was a damn miracle.
I joked with everyone while I was in the midst of the taper, “Who needs bones? I sure don’t. Let me be a lump of jello with no bones if it means I get to stay on the prednisone.” I was so worried about coming off of it; that I wouldn’t feel like myself, that I would go back to being exhausted all the time, that my disease would flare back up. I was also worried about being steroid dependent and all the accompanying issues that come with it.
Now that I’m done, I am fully reassured that it was the right thing to do. I still feel like myself. I have enough energy to run up and down the stairs at the water park and ride all the biggest slides with my kids. I have enough focus to start writing again, to get everything done that needs to be done in my day. I’m still not 100%, but my symptoms are mild and clearly not a major indication of continued inflammation.
I went to see a new dietician several weeks ago and had long discussions with her about research about diet in treating IBD, and designing an approach to diet that works for me. I’ve been given the okay to start adding soft cooked fruit and vegetables to my diet – one food per 3-5 day period, just a 1/4 a cup at a time. So far, I’ve added pears, potatoes and dairy free chocolate chips to great success. I’m compiling a long post about my approach to diet, so keep an eye out here for more very soon!