I heard that a new form of predisone drug called RAYOS is available now. It is approved for RA but should be useful for PsA. It is a delayed release prednisone. You take it before bed and it blocks cytokine which normally occurs in the early morning hours. Has anyone tried this yet? If so, does it help with morning stiffness and fatigue? Any comments with experience would be appreciated.
I've never even heard of it. But I guess the thing to keep in mind is that is sounds like it is prednisone, which I'm thinking would still have many of the long-term problems associated with it.
Ok. Started Rayos 5mg at 10pm in place of my morning 5mg prednisone two weeks ago. Fantastic resuts so far!! Timing of dose must be very important (same drug- differenct formula) and I am starting to believe I may be on to something since I tried a lot of things and only were marginal at best. In all fairness, I should point out that also I'm taking Plaquenil and it is warming up here in the northeast, but I still never experience this sort of "normacy"- more energy during the day, more alert (don't feel cloudy)...
First, I started noticing I COULD GET UP and didn't feel tired on day 3. (Normally it would take up to an hour) I still have a little swelling in the feet at the end of the day but I'm also running around A LOT lot more-eg., painted my living room last weekend- all day on my feet and didn't feel the maple syrup fatigue. My back tightness isn't eliminated- but I had this since I was a kid & sort of use to it. I also found that during the day I can do more at work- big time. I should note that on the 2 & 3 day I woke up early (3am) and couldn't go back to sleep. But now I seem to sleep more soundly and I actually dream now... not sure if this is important but wonder if this is because I'm sleeping better at night.
I'll update in a few weeks to tell you if anything changes.. I cross my fingers. I sharing this, in case any are consdering low dose steroid.. I've been on it for 3+ yrs.
Today, I'm taking my kids to the aquarium- lot of walking but very excited at the possibility of doing something with my family that I normally would have cringed...(fingers crossed) we'll see & hope that I make it!
If anyone has any experience good or bad please feel free to add into this message for others... God bless and good luck!
Good for you!