I have completed 3 weeks of my Acthar treatment for DM. 6 injections done, 19 to go!
Thanks to NORD, click here, my next two vials of Acthar arrived last week. This will keep the treatments going for another five weeks. I wish Fed-Ex would give a smaller window than 8 hours for delivery, the vials have to be refrigerated on arrival (the doses do come in a big styrofoam cooler with arctic ice packs but signature is required, that makes sense since each vial is $30K!)
As part of my Acthar literature I was sent ahead of time, I received a treatment journal to detail my injections. This ensures I don’t miss treatment days and I move the injection site around my abdomen. To this end, I picture my stomach as a clock centered on my belly button and inject myself in the following order: 10, 2, 8, 4 and 12 o clock. At times like this I’m glad I don’t have six-pack abs. Having belly fat does make the injections easier! That said the last injection left me the biggest bruise yet, even though at the time the injection went pretty painlessly.
I am tolerating the Acthar well. The only side effect thus far is a weird taste to a lot of food I ate one day last week. My taste sensation has since returned to normal.
However I am progressively getting weaker, particularly in my legs and arms. I can no longer walk long distances without taking a break. My right hip is getting sore due to my leaning on that side and I got out my quad-cane to assist me. Click here to read my article on that.
My arms too are getting weak. However I can still move them above my head pretty effortlessly. As mentioned before I do have to keep them extended a lot of the day as I get minor muscle pain when my arms are bent. The best way to describe it is the burn you feel after lifting weights.
I am also feeling more tired for longer stretches of the day. Whereas last week I would feel fine in the morning and tired by evening, this week I am tired by the afternoon and sometimes all day. I do have sleep apnea, for which I use a CPAP machine.
The good news is that, unlike before, I am not having any dysphagia issues and am eating normally. My weight is staying about normal. I usually weigh between 150 – 160 pounds. Back in 2007 my weight dropped all the way to just under 130 pounds, most of that muscle.
I have not shown any sign of the classic DM rash that I had before on my hands (Gottron’s Papules or sign) and eyelids (Heliotrope). Since my muscle biopsy in 2007 came back inconclusive, I wonder if I would have been diagnosed with Polymyositis if tested now.