I started Actemra at the end of October and was on 10mg Prednisone. I was able to taper to 8 mg with good results - first few days of reduction was tough (dull headache, nausea, fatigue) but rallied after that. I have tried to taper to 7.5 three times now; the first time, I lasted 3 days because of a bad headache ( not nearly as bad as the original GCA headaches) that was controlled by Tylenol 1 or Tylenol 2, then went back up to 8. The second and third time, I tried the DSNS method, the same symptoms returned, but again went away after a few days on 8 mg.
I spoke to my rheumatologist this morning who said he wants me down to 7 mg in a month to assess if the Actemra is working or not since the goal of the Actemra is to get me off prednisone. I am aware of this but am so worried ....the Actemra has made a significant difference in my life in that I am functional again, my energy level is up and for the most part, I’m beginning to feel like “me” again. I am mindful of fatigue and when I overdo things because I think I’m back to “normal”, I hit a brick wall and have to remind myself to slow down!
Should I be totally symptom free at this point? My understanding is that Actemra is a prednisone sparing agent, targets the Il6 protein in the blood - not everything that contributes to GCA. I have compared this disease to a roaring fire, and the prednisone and Actemra work to extinguish this fire. In my mind, after 9 months of treatment so far, this fire is still burning - not the inferno, but perhaps at the embers stage. And with embers, you get the occasional spark that occurs...I’m sorry I’m rambling, but the conversation with my rheumatologist this morning has really upset me. I am extremely sensitive to any and all medications (have been my entire life) and have been told I metabolize medication very rapidly. My side effects with Prednisone have been “over the top” and I am very worried that my rheumatologist will up the prednisone and take me off Actemra (since it is so costly).
I also understand that the dose reduction around 7 becomes tricky....I am totally overwhelmed, worried, confused.
I will try 7.5 again tomorrow with the DSNS method and pray that it will be ok.
Thank you to anyone who is able to share some thoughts ....and thank you to everyone on this site for their daily posts. The support just from reading other people’s experiences is very helpful.
PS - a couple of grammatical errors but my iPad is being stubborn and not allowing the cursor to go back to correct!
PS2 I will also try not to project and “stay in the day”!