When I arrived in Indiana with a staph infection in my leg, the infectious disease specialist sent me to a rheumatologist who told me to stop taking Actemra immediately. I had been giving myself weekly injections since October 2019. I'm presently taking 12mg of Prednisolone per day.
What has amazed me is that I feel no ill effects from stopping the injections at all. My last injection was on September 8. Actually, I feel some positive benefits. The feeling of nausea I would combat from time to time has gone, I was experiencing some discomfort and 'fullness' on my lower right side which has gone, my entire system seems to be running smoothly with less help and the abdominal bloating I had is gone. I've had no GCA symptoms at all.
I'll see the rheumatologist again for a 'fresh start' on October 28 which will be my new patient visit. My previous visit was viewed simply as an emergency evaluation. In all fairness, my new living situation is almost stress free...I no longer have to worry how to get to the doctor's office, pick up scripts, do grocery shopping and cooking. After 4 years of being alone my husband enjoys the purpose it gives him and I appreciate his willingness. Some of my well-being may be from lack of stress but I feel strongly not taking the Actemra is also a contributing factor.
Here is a shot of my leg...now it is as good as new and fortunately no bacteria got to the metal in that leg!!
PS I just wanted to add that lovely 83-year-old lady, Gail, beside me in the new avatar...has PMR and GCA, was properly diagnosed and could not take Prednisone. She was given Actemra weekly and is now taking it every three weeks and soon off.
Ending my Actemra next month
First Actemra infusion today
After going off prednisone for GCA, how long do you continue with actemra?
Curveball: Actemra and Fosamax!
