I have been given a new drug to take called Kineret. It was originally created to treat severe arthritis for patients that are non responsive to oral drug options. It is an injectable, yes that's right I said injectable. They might as well call it a shot because essentially your giving yourself a shot every day.
I have been using it for three days now and I have a little system going.
1.) Remove from refrigerator and wait an hour.
2.) Clean my side with a alcohol swab.
3.) Mark injection site with marker (I know this isn't necessary but I'm watching for irregular reactions and this is the best I could come up with).
4.) Jab myself with needle (make sure I am not in a blood vessel) and push plunger.
When I was first told I would be doing these shots I figured there would be a little bit of assistance available from my family but it turns out they are all to squeamish to be of any help. I wasn't really worried about it because I though the needle would be smaller and the amount of medicine would be a little less then it is.
Fact is it hurts... the Dr. at John Hopkin's says this thing could destroy the ECD I have in my abdomen and pelvis. Unfortunately there are no studies indicating what happens with the ECD if some day I stop taking it. The largest study I have read on Kineret being used to treat ECD had only two participants in the trial.
Good news is I have insurance! Kineret costs $3,248 a month x 12 months = $38,976 a year. I will never take that flimsy prescription drug card for granted again.
In 2013 I started this Blog as a place to vent, a place to share my grief and fear after being diagnosed with ECD (a rare blood cancer called a histiocytic neoplasm). As you will be able to tell by reading my early posts I struggled in the beginning with what ECD meant for me and my life and at times suffered from depression and anxiety. Much has changed in the last 7 years. Currently I’m on medication that holds the devil at bay, giving me hope, but always reminding me that every day is a gift.
Hey,
ReplyDeleteI just started yesterday and I enlisted the help of my 13 year old daughter who sees it as payback for all of the immunizations that I made her get.