Thursday, December 20, 2007

 

Change

On Friday morning, I woke up at about 3am, freezing. I was so cold that I couldn't sleep. I also had a horrible headache. I have this electric heated mattress pad on my bed that has settings from 1 through 10. I normally sleep with it set to 2 in the winter, but will have it to 3 on particularly cold nights. Freezing as I was, I turned it up to the unprecedented 4 setting.

I stopped freezing and eventually got back to sleep. When I got up that morning, I felt as bad as I ever had. I had a horrible headache. I could barely get out of bed, my MS symptoms were worse than they had ever been. I was heading south to see [someone] later that day, normally something I look forward to, but I was dreading the trip. My coordination was poor, the headache was causing trouble with my vision.

I made the trip anyway, as it got later and later in the day, I ended up feeling better. I was never 100%, I haven't been 100% for years, but that's beside the point.

The point is that Friday was a day after a Betaseron injection. The chills I felt, the headache were what, for most people is a common side effect of the medication, a side effect that I haven't had much of. In fact, Friday morning was only the second time I experienced that.

What the Betaseron normally does for me is makes my MS symptoms worse for the next day. The idea is that the Betaseron is supposed to slow the advance of the disease, to make attacks less frequent. While I wasn't having attacks, every other day I felt like crap, a direct result of taking Betaseron.

I felt like I normally do after my Saturday injection which is to say, crappy, but no worse than I normally do. It was the Monday injection that was a problem.

On Tuesday morning at 1:30 I woke up freezing again. Not at home I was unable to turn my bed up to 4, but I had a sweatshirt I was able to put on, to make myself somewhat comfortable, temperature-wise. The MS symptoms were markedly worse, though. I didn't hav enough energy to ever roll over. I was on my back, my back was killing me and I couldn't get off of my back.

I was miserable all day on Tuesday. Two out of three injections caused me excruciating pain. The Betaseron, a proven MS medication was causing me discomfort and wasn't helping me with what it was supposed to.

The best I feel, the best I ever feel, is the first hour or so after I get up on a day when I'm going to give myself an injection. I wake up feeling good, but then I start dreading how I'm going to feel after the injection, how crappy I'm going to feel the next day.

The best I've felt in about a year was one day in October. I had forgotten to take my injection, the only time I ever forgot. I woke up feeling so great and then realized what I'd done. I took an injection an hour after getting up. As the day went on, I felt what the drug was doing to me. I didn't like it.

I saw my neurologist yesterday. We discussed my medication. I'm worse, much worse than I was the first time I saw her. I've been on Betaseron for a little over a year now and it's not doing what it's supposed to. It's causing more discomfort than it should, more discomfort recently than it ever has.

I'm off of Betaseron.

This is my first morning without Betaseron. Today would normally be a post-injection day. I would be slow. I would have a headache. I wouldn't type nearly as well as I am right now.

I feel great. I haven't felt this good in so long. I have no dread of an impending injection.

Betaseron did not work for me. Everything I've read says that it's one of the best drugs for MS, just not for me. I wish everybody on Betaseron the best of luck. It just didn't work for me.

The bad thing is, of course,that I need to look for something new. I got lots of literature yesterday. I've got plenty to look through. My options are similar to what I was doing, once a week or once a month. I'll have to make a decision soon.

Today, though, I feel great. Today I'm trying to not think about pharmaceutical options. Today I'm going to be as normal as I can be.

BOJ

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