Actemra

Thank you all for your input !
Ibam now on 30mg snd hope to drop to 25mg in another week if my CRP and Sed Rate continue south !!!!
Fingers crossed !
I feel very normal at the moment and only symptom is fatigue some days !!!!
Thanking you all for your encoursging stories!
Happy New Year !!!!
Marie

I have polymyalgia rheumatica & the complication, Vasculitis. My Sed rate & CRP were in the hundreds when I was diagnosed at Mayo in May 2022. I was put on a massive dose of prednisone & started on an Actemra infusion. My inflammation dropped to normal levels in just about 2 months. I tapered off the prednisone completely by the end of September 2022. My inflammation rates have been normal. I have minor side effects from the Actemra but have felt absolutely normal since I started with Actemra. I have my infusion every 4 weeks. We tried to stretch it to 6 weeks but my CRP started to go up so I guess I need to be on it a little longer. But let me emphasize how normal I have felt since starting Actemra & how I might be dead if it wasn’t for the wonderful doctor who diagnosed me at Mayo. I’m in the care of a great team of doctors here.

I have rheumatoid arthritis and have infusions of Actemra every 4 weeks. It has really helped me. My rheumy said he is considering possible changing the frequency. Interesting what you experienced by changing. Hmmm... curious what my doc will do.

I'm currently doing Actemra infusions every 4 weeks. I have had unplanned "interuptions" of Actemra. Once was a 6 month interruption when Actemra was in short supply and existing supplies were being diverted to seriously ill covid patients. Things didn't go so well for me. I didn't mind but I needed to take prednisone again.

My rhematologist was reluctant to change anything after the supply of Actemra was restored. I easily tapered off prednisone again. I have been on Actemra for 4 years without any major difficulties.

Starting in 2024, I will be trying infusions every 5 weeks instead of every 4 weeks. My rheumatologist isn't so sure how it will work out but thinks it is worth a try. There is no plan to stop Actemra completely anytime soon.

Lucky you that you can be treated by Mayo doctors. Sounds like you are doing really well. I was up there with GCA and was diagnosed somewhere around 2014 only to get home and not have a doctor here in Florida that knew about the disease and could treat me. There was no Actemra then either.

My husband was just given Actemra injections for GCA. We are waiting to confirm he doesn't have an infection (coughing for a few weeks, waiting for results from chest X-ray). Then he'll start the injections. He had to have three 1200 mg IV infusions of methylprednisolone last week (just diagnosed with GCA a week and a half ago, had PMR since last May.) And landed in the hospital for a weekend. He has horrific headaches and his doctor told him no more Tylenol. We've been fighting with his doctor over dosing since the IV infusions. He's on 80 mg of prednisone and if he takes it all at once in the morning the headaches return by 6 am. She would not let us split the dose. Finally, when we asked for a 2nd opinion, we were told by the Chief of Rheumatology that 80 mg is too high a dose to take all at once and we could split it how we want so long as he gets the full 80 mg daily. We then were able to get the Actemra and were definitely worried about the potential side-effects. However, reading these posts on here has eased a lot of those worries. I appreciate everyone who shares their stories here. It really does help people like me who are new to all of this.