Playing the Guinea Pig

I went to the rheumatologist yesterday for my regularly scheduled three month visit. I didn’t increase my steroids above 5 mg. this week even though my joints, muscle, and skin were inflamed. The doctor was surprised to see how inflamed my joints are since that’s not typically something you see with Dermatomyositis, so she’s running extra tests this time and said she might start me on a drug for Rhaumatoid Arthritis depending on the test results. In the meantime, she gave me some samples of a drug called Rayos, a new delayed-release version of Prednisone. The doctor told me I should take it in the evening since it’s a slow-release drug, but when I read the insert, it says that it kicks in about four hours after the person takes it. Afraid it would kick in around midnight and that I wouldn’t be able to sleep as a result, I decided to wait until this morning. Unfortunately, I was really achy when I took it around 5:30 and felt hardly any relief later in the day. I felt so terrible, I became completely tongue-tied when talking to students today. I just wanted to go find a couch and curl up in a ball.

My husband recommended that I take Rayos in the middle of the night if I happen to get up. First off, I sleep through the night thanks to a good over-the-counter sleeping pill. Secondly, you’re supposed to take this new drug with food, and I don’t eat in the middle of the night…ever. The idea of it turns my stomach. Therefore, that idea is out.

The pamphlet that came with the sample states that 5 mg of Rayos is equal to 5 mg of Prednisone…it’s just released more slowly. My doctor seems to feel that this makes it more effective but I didn’t really feel any relief at all. Additionally, since the patent on Prednisone has expired and the patent on this new version has not, it’s going to cost more if I start buying it. I even asked my doctor about this, and she confirmed it.

I’ve decided I’m going to take Rayos tonight to see how I feel in the morning and to see if I wake up in the middle of the night. Sleep is quite restorative to me, so I’m not going to be a happy camper if I get a corticosteroid rush around midnight. However, I feel the need to give this a try as my doctor has requested. I’ll post an update tomorrow to report my findings.

Update…I tried taking Rayos two nights in a row and I woke up each night. Friday night, I woke up for only a few minutes but felt pretty good the next morning (much less achy than I normally feel). I also had a pretty cool flying dream, and I never have flying dreams. However, last night I woke up at 3:30 and could not get back to sleep for over an hour. Although, I wasn’t as achy this morning as I usually am, I’m feeling pretty achy now this afternoon. There’s a front moving in, though, so that may have something to do with it.

So my verdict is this…see if your doctor has any samples if you’re interested in trying Rayos, but try it on the weekend or on another night when you wouldn’t mind waking up before you normally do. Please feel free to respond in the comments if you’ve tried Rayos and would like to share your experiences with it.

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