At the end of May, I was lucky enough to do some 14 or so injections of steroids in my hands. 6 of my digits x2 and 2 in the wrist. The pain from that alone is horrendous. In Dec of 2019 when I had it done - it was quite a miracle so much so, I called it my "Miracle of Hanukkah" was that I was pain free. I'm pretty sure the reason why these injections were short lived was due to the humidity of the spring and summer in N.E. Ohio. After visiting with my Rheumatologist and going over my inflammation under ultra-sound with him, It was decided that the "Rituxan" I was using was not benefiting my Auto Immunity Issues. Sadly, once you have had a good amount of Rituxan, your B-cell can recognize and not respond. I am now Rituxan x14- 12 in 2005-2006 and of course 2 this past year. With that said, Dr. advised me that it can be a game of trial and error to find the correct biologic to help my issues. So now he was to talk with my Lymphoma Expert to again come up with the "safest" biologic for someone as rare as I with a Primary Immune Deficiency as well. I will be starting a weekly injectable called Actemra which is made by Genentech. The same company that made Rituxan. I can ohly hope and pray that this helps and that the inflammation in my hands finds it's way the fuck out. This is also why I have not been journaling too much. So of course once the RX was sent over to the pharmacy it was OF COURSE not a covered medication. I decided to call my drug coverage and find out why. Since it was non formulary, I was transferred to the department that could/would change that. I explained my specific situation and she asked me to hold and called over to the Dr. Once she came back, she told me OK it's been approved. I will have to do a couple labs and then I will be administering my weekly injectable and praying for the best. Reading the damn box warnings are enough to make you scared AF. MY FIGHT MUST CONTINUE even though at times I'd just like to throw in the towel, I don't have it in me to do that as of now. I have to remember that I am the daughter of a boxer and I will NOT LAY DOWN my gloves!!
All My Love ~ M 08/03/2020