Today was my first day off of oral prednisone since September. Prednisone is a steroid that is often used to treat inflammatory disorders. Typically, when I'm on a course of prednisone, it's for a week or two. While four months is by no means the longest course of prednisone, it was long for me. Prednisone is a great drug because it works quickly. It also is a scary drug with bad side effects - muscle cramping, insomnia, etc. One of the side effects is that it can affect your bones. This is a huge concern for me, because I already have had osteopenia bone problems in the past.
The biggest thing with being on the prednisone is that it can delay the healing of open wounds. When I had my surgery, I was still on a pretty high dose, and had been taking it for about a month for my eyes. When you're on prednisone, you can't just stop taking it, your body needs to slowly taper off of it. This is because the prednisone can affect your adrenal glands, so you need to give them a chance to "catch up" as you taper. Additionally, because we're still afraid of my eyes, I had to taper extra slowly, because the uveitis has a tendency to come back if you taper too quickly. So I've been trying to get off of the prednisone since the day of my surgery, October 29th. If I were a normal patient, I probably would of been able to get off of the prednisone in just two or three weeks...instead, it's taken me 10 weeks.
The prednisone was treating my arthritis. And I also haven't been able to take the methotrexate to treat my arthritis and my eyes while I'm healing, because that too can inhibit healing. My left ankle has flared up bad. It's swollen and puffy. Walking on uneven packed down snow is incredibly hard. My doctor had me start wearing an ankle brace. Keep in mind that normal people can take over the counter pain killers, like Advil, but I can't. It hasn't been fun.
The prednisone was also treating my ulcerative colitis. We're not sure what's gonna happen now that I'm off of it. Hopefully the Entyvio has kicked in, but we still don't know if it works, partly because it takes 4 to 6 months to know if it works, and partly because I've been sick since the first week I was on it.
I had my drains out just before Christmas, eight weeks after my surgery. My wounds are about the size of quarters. The last two weeks since they came out, I've had a lot of pain and discomfort. I've spent the holidays in bed. Not that it's different than the last few months...I've spent practically every moment that I'm not at work in bed.
I'm still on steroid eyedrops. I'll be on those for at least another few months. Like I said, you have to taper very slowly or the uveitis could come back. While my eyes have no active inflammation, my vision is still not where it should be and we still don't know that it will come back. And I can't get a new glasses prescription until I'm off the drops for a while. I'd like to say you get used to life being blurry, but honestly, you don't.
But even when this is all over. I'll still have ulcerative colitis. I'll still have uveitis. I'll still have arthritis. It doesn't go away. I want it all to go away. Years of being trapped in a body that hates itself has started to wear on me. It sucks, because people really worry the first few weeks after something happens....after a little while, most stop checking in. It's understandable, people get busy, people have their own lives. I'm super independent and I hate asking anyone for help, but man does that approach get super lonely sometimes. It's hard to feel so alone, especially over the holidays.
But today, getting off the prednisone feels like a big step today. I hope it was.
