Actrema advice

Rheumatologist put me on Actemra in 2024 to help wean off prednisone (steriod) faster. I was able to wean down 1 mg. every 2 weeks instead of every 4 weeks. I had been on prednisone for a year or so.....not good. Actemra (not a steriod) infusion takes about one hour. I feel nothing during, and have very few if any side effects. I've been on the infusion (once a month) since December, 2024. I may have to have the infusions once a month for 12 months - maybe longer. Everyone is different. If I come off the infusion in July (12th month) and have a relapse with PMR, Rheumatologist says we start over - could be harder to get PMR to go into remission.....so we want to make sure I take it long enough. Judy in Colorado 81 yrs. old. I found that PMR and/or prednisone has compromised my joints and muscles!!!

Could you be more specific about how muscles and joints were compromised by prednisone. I ask this questions since I have been on and off prednisone for 35 years due to PMR. I am currently taking Kevzara and reducing my prednisone.

I have taken two hard falls in two months. I don't seem to have the muscles / strength to keep me from falling. I walk with a cane now. I play golf, walk on treadmill, went to PT.....cannot do steps without pulling myself up. The rheumatologist, GP and PT therapist all told me that PMR and prednisone will compromise muscles/joints. To what extent? no one knows.

I have been off and on prednisone for 35 years due to a diagnosis of PMR. Mainly on. During that time I have been ranked nationally in the USA as a senior tennis player I have found prednisone to be a miracle drug. I am now on Kevzara and reducing prednisone.

Being on prednisone for 35 years and a nationally ranked senior tennis player with PMR … YOU ARE THE MIRACLE… not prednisone!!!

I could not have tennis if I hadn't taken prednisone.

My brother-in-law has had PMR for the past 12 years. He has taken methotrexate all that time, and no prednisone after the first few months. He is at least a high level regional senior tennis player in the southeastern US.

jmdougherty: Do not have PMR just Giant Cell Arteritis and have been on Prednisone 80, 100, and 60mg from Jan, '24 to tapering in August '24 , then on Actemra. Rhumatologist said she would never put me back on Prednisone (thanful). Tomorrow I meet with her and get Actemra IV infusion as well. I missed about 4 days of walking outside this winter and now have some muscletone but still 20lb lighter than before GCA. Prednisone gave me prediabetes, chronic kidney disease, weight loss , lumbar x, and irregular liver function diagnosis. You did not give your age, I am 77.

I was diagnosed with PMR in September of 2024 and with GCA in November of 2024. Symptoms improved with Prednisone 50 mg. daily and I have now tapered to Prednisone 20 mg. daily without relapse. My rheumatologist strongly recommends Actemra and I truly do understand based on how I feel on the Prednisone. However I am so frightened of starting Actemra as I also have COPD, oxygen dependent with activity, and I really don't want to get a respiratory infection. I am aware that Prednisone also increases my risk of infection and I have just basically stayed home since these diagnoses other than Dr. appointments. I also have a history of a CVA for which I take Aggrenox, osteoporosis for which I have had a Reclast infusion, hypertension and hyperlipidemia. I had been walking slowly with oxygen on my treadmill for 30 minutes daily when I was diagnosed with GCA and I have slowly increased my walking to 45 minutes twice daily since then. So I am getting my exercise. I am wondering if anyone else currently on Actemra has COPD? Thank you for any insight.

The safety profile of Actemra alone is probably better than prednisone alone. The difficulty is Actemra may not allow you to get off prednisone. You could wind up being on both prednisone and Actemra for a certain amount of time simply because prednisone can't be stopped abruptly.

Prednisone suppresses your immune system and increases your risk of infection. Actemra suppresses your immune system and increases the risk of infection. I had a tendency to get infections whenever I took prednisone in combination with any other medication that suppressed my immune system. My rheumatologist would say "too much immunosuppression" caused the infection instead of saying prednisone caused the infection or the other medication caused it. She said it was the combination of both medications.

Unfortunately, COPD increases your risk of a lung infection. I can understand your concern about adding Actemra to the mix. I don't know what you should do. Doctors face tough medical decisions all the time. That is why I never wanted to be a doctor.