It has been eight months since Myla was diagnosed with Nephrotic Syndrome. She has been on Steroids for the whole time all but two weeks. She is considered steroid dependent, which means that as soon as we start to taper down her steroids she relapses. This time around is no different. Myla just relapsed on Friday. Kirk and I spent the day crying because we knew what that meant.
Since steroids are no longer working for her they are switching her to low dose steroids and Cytoxan which is a chemotherapy drug.
When I was talking to her doctor in Friday she said well some parents want to give steroids one more try. At this point they know steroids, they know the side effects by now and they are scared of the unknown. So she gave us the option of trying steroids one more time and told us the long term effects of her being on steroids this long. Or we could try Cytoxan and listed all the immediate side effects along with all the long term side effects. It is so hard to decide what to give her and knowing what ever our choice is there are so many side effects that will affect her.
We decided to give Cytoxan a try since the steroids are not keeping her from relapsing. As with steroids it will affect her immune system but cytoxan lowers her white and red blood cells which increase her risk for infection and also she has to continue to stay away from anyone that is sick. Let me tell you how hard it is to stay in the house all the time. I do not mind so much but I know the girls need to get out more and play with others kids.
The other most common side effects are stomach pain, nausea, vomiting, and hair loss.
We are just praying that her body will respond well with the Cytoxan and hope that she will stay in remission longer than she is now. I would LOVE to have her off all drugs and give her body a rest for at least a few months.