Amount of time on Actemra

I started Actemra infusions in January 2025. At that time, my rheumatologist told me that I would likely be on it for at least 2 years and then taper me off of it. There's a study from England that showed, individuals who quit taking Actemra after a year had a 50% chance of recurrence of GCA. I can't put my hands on it now, but it has been referenced in this support group.

Since starting Actemra, I was getting respiratory infections, which I never had before. The doctor reduced my infusion dosage. So far so good. I do get quarterly bloodwork done, to check my liver functions and inflammatory markers, among other things.

I debated whether or not to post this but after giving it a lot of thought I decided that it’s important to tell my story so that others have all the information. I was on Actemra for 5 years for PMR/GCA. It was great in that it allowed me to get off prednisone. I tried weaning off Actemra a couple times but had symptoms which I thought were related to GCA. So, I restarted the Actemra. I then developed a fungal infection in my lungs (aspergillosis). I also tested positive for Micobacterium Avium. I was treated for the aspergillosis with an anti fungal for 3 months and am currently in remission. I’m now 7 months into treatment for the Micobacterium and still have positive cultures. Treatment for this has been challenging to say the least. It’s believed that these infections are related depressed immune function from the Actemra. These bugs are found in water and dirt/dust. I had a hot tub and loved to garden which put me at risk. I have been off Actemra for 1.5 years now. Unfortunately, my PMR has relapsed. I’m struggling to control it with low dose prednisone. I don’t think they’ll ever put me back on a biological agent again. I think Actemra can be really beneficial for treatment of GCA and PMR, but make sure you understand the “boxed warning” on the product. My rheumatologist never discussed this with me. I’m not sure whether or not it would have made a difference in my decision to take Actemra but I think I probably would have gotten off it sooner. Hindsight is 20/20. Many people do really well on Actemra but I was, unfortunately, one who developed serious side effects. I’m hope this post doesn’t come off as too negative but thought it was important to get the information out there. I definitely think there is a need for more medications to treat this frustrating disorder.

@cpolich
Nonnie, I am so sorry you have encountered any mycobacterium! These are BAD BUGS! My partner is an avid native plant guy, and I am, too. He got mycobactetium chelonae last Feb. Localized to his right hand tissue. Thank God, not in the blood. Three hand surgeries, 8 weeks of 6 hours per day IV antibiotics and multiple po antibiotics later, God has healed him and no sign of the mycobacterium now. Right hand function will never return. Minimal use of index finger, 40% loss of lymphatic drainage, loss of 2 flexor tendons.....this is not a small matter. I am staying out of the dirt this year. I am wearing my mask in public situations. We must be our best advocate to protect ourselves from ANY outside infectious issues! It's just not worth the risk. Remember, hand washing is of utmost importance.