Unorthodox dose splitting

Posted by pdxmac @pdxmac, Mar 9 12:25pm

I thought I'd share my recent discovery. After 30 months of pred use, I was briefly down to 2mg after adding in Tyenne (a generic IL-9 inhibitor similar to Actemra) in July. Once I added in the Tyenne, it was like a miracle and I was finally able to get below that awful 7mg pinch point. But starting in December I got stuck and had to go back to 3mg, and have had trouble getting any lower. I'm okay during the day but nights were bad again and the fatigue was awful. My rheumy suggested splitting the dose, which I started doing but not in the usual way: I take the larger dose (2mg) with my evening meal. That has helped immensely. I'm making slow but steady progress. The other thing that has helped is daily stretching, which I've always done to some extent but I've been using the videos put out on SeniorShape.com, which are gentle and amazing. There is a lot of variety so they never get old. Now the only worry is that I still don't know if I can get to zero. My rheumy says I may always need to be on a low dose of pred. I don't know why Tyenne would work so well for 6 months and then be ineffective, but that's what she is implying. I have an appt with an endocrinologist later this month so I hope I can get my cortisol levels checked. In the meantime at least I feel good.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

My first time with PMR lasted 3-1/2 years with the last six months going back and forth between 1 mg and 1/2 mg prednisone until I was finally able to stop taking it without much pain when I first woke up in the morning. My acceptable pain level was anything less than 2 when I got up in the morning. My rheumy had me keep a daily journal with the dose for the day and my level of pain (0 to 10) when I first got up.

Daily stretching helped me also. I also worried if I would ever get off of prednisone my first time with PMR and it's good to hear that you are feeling good. Hoping your appointment with your endocrinologist goes well and you can let us know how your appointment goes.

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