When she relapses, she'll start retaining fluid throughout her body and gaining weight because of that. She also gets very swollen and puffy which can be painful. When this goes on for a week or so, we put her on the highest dose of steroids. After about 8-10 days, she'll respond to the medication and lose the fluid. We then follow a schedule to begin tapering her off the steroids. This process takes a couple of months. It seems that as we lower her doses, she has another relapse, and we start all over again.
It has been a year now, that she has been on the steroids without any break. The doctors want to try a new medication to see if she can go for longer periods of time without a relapse. We have decided to go ahead and try this. The new medication is called Cyclophosphamide. It will be given to her for 12 weeks. She will take it in pill form, daily. Some of the side effects are; thinning hair (although I don't think it will be noticeable, and it will grow back), lowered white blood cell count (this will be monitored by weekly blood work and is Halli's least favorite part), there are a couple of other risks involved, but they are not too much of a concern with the small dosage she will be taking.
We are hoping and praying that this medication will be able to help in some way. We probably won't be able to tell if it has helped until the end of the treatment, which should be the end of this year.
As usual, Halli has been strong and brave through all of this. Thank you for all of your prayers, support, and concern. We love you all!
