This week I got my first measureable indication of how well my Acthar treatment is working or not. Unfortunately it was the latter. I have been doing blood draws on the first of every month to measure my CPKs. Click here for information on this test. My CPKs have been on a steady march upwards since last fall. It was 2,700 u/l when I started the Acthar treatment on April 3rd. I found out on Friday it has increased to 3,200 u/l. Not the result my rheumatologist and I wanted to see!
It is very easy to get caught up in the CPK numbers game. Some DM or PM patients have normal CPKs even when the disease is very active. CPK values may lag the improvement or worsening of the disease. It is not a reliable indicator of how severe the disease is or how bad you feel. Finally since I have my CPK measured once a month, it could have been more elevated than 3,200 u/l mid-month and I am actually improving!
Even if I am still getting weaker, I do not feel as fatigued this week as I did previously. It is hard to quantify my energy level from day to day. Some days I feel great and others not so much. The good days do not correlate to when I take the Acthar as much lately. While I have not been experiencing muscle or hip pain this week, my gluteus maximus (i.e. my butt) is starting to ache if I sit on a hard surface for too long.
On Sunday Nicole videoed my Acthar injection. Click here to see that.
While that one was routine, my next injection on Thursday was anything but. Thankfully I did not video it as it would have been titled “When Things Go Wrong.”
I use 25 gauge needles to inject myself. I bent the 1st needle removing the safety cap. Using the 2nd needle I struck blood and had to complete the process using a 3rd needle and new injection site. I just have enough needles to finish my current and next vial of Acthar.
One thing I have noticed with the 2nd and 3rd vials of Acthar is that they become very gelatinous when in the fridge. This shocked me at first as I thought it was frozen. It is to be kept between 36’F – 46’F when not in use. However it returns to its normal liquid state when brought back up to room temperature before I inject myself.
I did receive a letter from NORD confirming the remainder of my 12 week course of Acthar is covered at no cost to me. I will continue the Acthar treatment for now at least until I consult with my rheumatologist next week.