Patience my dear, patience...

Last post I wrote about my hope to be able to try a new drug. An experimental one. I visited the hospital yesterday for one of my very frequent check-ups, and to discuss the possibility of giving Kineret a try. There's more to this process that I had thought!

In theory, my doctors believe that Kineret might be of help with not only reducing my bone pain, but might also slow down the progression of my illness. However, there are some serious risks with this drug that need to be further investigated. Kineret (and bear with me here, this is all jumble to me!) is an "interleukin-1 receptor antagonist" - part of the "biologic response modifier" family of treatments. This drug increases the risk of infection, and also carries a small risk of causing lymphoma among other side effects.

This drug is intended to treat moderate to severe rheumatoid arthritis - and that's where the complication comes in. Researchers don't know what the implications are for Erdheim-Chester Disease; white blood cells already don't know how to behave properly so nobody really knows how they'd react to this treatment. Just a handful of ECD patients have tried this, and only for a short time - far too soon to determine any long term implications.

My medical team will be doing further research, including consulting with an oncologist at a cancer centre in the US who has been doing advanced research on interleukin treatments. If that's a go - then seek gov't approval to use this drug for an illness it was otherwise intended for. Then, funding - this isn't cheap!

Am I still on board? Yes. Do I understand that this could go either way? Yes. I know that there's no cure, but I'm desperate for a better quality of life for at least awhile. I need to hope for something good, because some nights when I'm feeling quite awful it can be hard to envision a better day tomorrow.

Yesterday was a pretty good day. So is today. I'm feeling greedy, I want more days like these.