Amount of time on Actemra

I have been on Actemra for 18 months for PMR and rheumatoid Arthritis..the first 6 months were every two week injections then upped to weekly when it wasn’t holding the pain .it seemed to help me come off prednisone but it has been a very slow process. I’m on 2 mg atm ,reducing 1 mg a month so almost there ! The pain never left however moving from hips to knees . I started getting palpitations and feeling lightheaded to say nothing about feeling very tired …everything ached . Folllowing an episode of feeling really out of it and seeing my low 4.2 A1C levels for the past year I was put on a glucose monitor .It revealed I was hypoglycaemic so I stopped Actemra . That was two weeks ago and I am feeling unbelievably better . I’m not having low glucose alarms going off all night and my levels seem to be very level if still on the low side . Don’t know what that means for the future of my taking it but I wanted to alert others to the possibility of this side effect .

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

I appreciate that you posted this. I think good and bad experiences need to be shared so people get the whole picture of the benefits and risks of Actemra. I have been on Actemra for 7 years without any serious problems. I think it is time for me to see what happens if I stop Actemra.

I had plenty of bad experiences on prednisone too because of immunosuppression. There are risks involved with any medication that suppresses our immune system.

The positive in favor of Actemra over prednisone is that Actemra can be stopped in case there are side effects. It was extremely difficult for me to discontinue prednisone because of adrenal insufficiency. Even when prednisone should have been stopped on several occasions, I had to stay on prednisone.

@dadcue I agree with you! I would have done anything to get off prednisone. So, I may have started Actemra anyway knowing what I know now. Just wish I came off sooner. I’d love to get off prednisone now but I am running out of options. Plaquinil didn’t work and my doctor doesn’t want me on methotrexate due to side effects. I wish there were other options. Glad you are doing well on Actemra! Praying for more research!

@cpolich
Seconding gratitude for your sharing details of your unfortunate experience with respiratory infections while on Actemra--that fine print warning that materialized. It is good for all of us to know as a real life precautionary tale and much empathy for your adverse experience. You have helped others, though, who also enjoy pursuits "in the dirt". There have been times when I've worried about my gardening stirring up the possibility of inhalation of nasty microbes, fungus, etc., that I've read about. Knowing about your experience )-: , I am going to mask up (N95) well during some of my gardening adventures (yuk, hate the mask, but feel more protected during possible times of exposure due to weakened immune system & knowledge of susceptibility in particular to respiratory infections while on Actemra/Tyenne). Praying for you, us all and for successful, concerted research efforts!

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.

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.