political decisions..

     Treating my daughter’s Arthritis now has come to the point where it is more of a political issue. The drugs she is using at the moment have done a lot for her, but after a few flares here and there, we have discovered they don’t do enough.

     It is not recommendable to keep pumping steroids in her body, after almost 2 years nonstop, she needs a break from it. However, every time we come to a certain level, she starts flaring again, so we are forced to up her dosage. Tapering must be done very slowly,  it took us 4 months to go from 10mg a day to 6 mg a day. Now we are back at 8 mg a day so we have a long way to go yet….She is currently taking extra vitamin D, for steroids can compromise the density of the bones. (She is popping 14/16 pills a day at the moment, at 2 shots a week and 1 IV a month to that and you have yourself a “Glow in the Dark Daughter.”)

     Her chemo will most likely be upped again too and her anti inflammatories are also upped. Her 4 weekly prednisone IV is still happening, I thought that was a temporary boost, but it is 9 months on the go already. She isn’t heavy enough yet to up her biologic so now we are at a place where we should try a different biologic.

      There are two options left for that; another IV, starting at week 0, then again at week 2, 4, 6, and eventually every 8 weeks. This would be Remicade. The other option is another injectable; Humira, what has to be done once every 2 weeks.

     My girl now has to be approved by the insurance company, and the clinic nurse wasn’t very hopeful she would be approved. Pretty sad to see your child isn’t a person with a crappy disease anymore, but a case with a number and a price tag….

     On a positive note; summer is finally here! Both my kids had a fantastic year at school and are now enjoying a well deserved break. The lovely weather certainly helps!