@elizabeth22
Thanks for all the helpful tips. I’m really hopeful about the Actmera after reading your experience & great advice on warming it up. How often do you take yours?
Also what exactly is peripheral artery disease rehab? I have heard others mention it.
Thanks in advance.

Hello @elizabeth22 , Just wanted to share with you my experience with GCA. I hope the Actemra works for you as it did not work for me. I am still at the trial and error stage. Here is my story. I received my diagnosis in Jan 2025 (at the time I was 67yrs old). I had severe temple pain in my right temple for a week or two. Went to see my Primary Physician and she started me on the high dose prednisone (60mg) then referred me to a Rheumatologist and a Surgeon. I had a biopsy done a week later. Because of the high dose of prednisone, 6 days prior to surgery, I was told that the results might come back as negative which is what happened. Once the pain went away we started decreasing the Prednisone. Once I got down to 7.5mg prednisone the temple pain returned (relapse #1). I had to go back up on the prednisone dosage (30mg) until the pain went away. We decided to try Actemra as I decreased the prednisone again. I used Actemra for 4 weeks then ended up with diverticulitis so had to stop the Actemra. While continuing on the decrease of Prednisone I got down to 10mg and the pain came back (relapse #2). I had to go back up on the prednisone dosage (cant remember if it was 20mg, 30mg or 40mg on this relapse). My Rheumatologist suggested we try Methotrexate as we decrease the prednisone dosage. Methotrexate caused me to be extremely tired and out of breathe when I did any physical activity. I am usually a go go go person so this was really causing issues with daily life. We discontinued Methotrexate and continued decreasing the prednisone. I got down to 8mg prednisone and the pain came back. Ended up back at 40mg prednisone (relapse #3) until the pain went away. Unfortunately the pain took longer to go away this time then the last 2 relapses. Rheumatologist suggested we try Rinvoq while we decrease the prednisone. We have been decreasing the prednisone every 2 weeks. I am now down to 7.5mg (as of 5 days ago). So far so good. I am a little skeptical though as this dosage is where I had my first relaps. Fingers crossed the Rinvoq works. If the Rinvoq works with the 7.5 mg prednisone we plan on staying on the 7.5mg for a few months before we trying going down to 6mg prednisone. The goal for me and I believe everyone else taking prednisone for this disease is that we can get off prednisone completely. Hopefully you will not have to go through any relapses and Actemra will work for you. The downside to all this prednisone, for me, is each time I have to go up on the dosage it puts more weight on me. One of the prednisone side affects that has hit me hard. I am hoping that once I can level out on the prednisone some of this puffy weight will come off. I have not lost any vision yet but I have seen my Ophthalmologist twice in the last two months because my vision in the left eye seems to be getting blurrier. He feels it is just a change in my vision. I go back in another 2 months to have it checked out again. I don't know if this is also a side affect to all of the prednisone I have had to take or not. Time will tell. Don't want to cause you to worry but wanted to give you a picture from someone that has not had a lot of luck with these other medications. I truly hope your journey with this disease is not as trying as mine has been. I check this site about once a month so please keep us updated on how you are doing. Saying prayers for you and everyone else dealing with this disease.