Actemra Side effects

[alvertta]

Due to a mix up between my doctor and pharmacy I have not had my Actemra for 2.5 weeks. I usually was having one shot weekly. Has anyone had side effects from stopping Actemra? I feel very tired but I am not sure if that is my GCA or the loss of that drug. I am on 7 mg prednisone daily.

[LemonZest11]

Hi alvertta, I am taking tocilizumab and because it affected my white cell count and I developed neutropenia, my jabs were pushed out to fortnightly and then three weekly without any adverse side-effects. My ESR and CRP both remained low and I continued to feel well, so I think you will be OK. Have you been able to have your dose now? Is your doctor aware?

[alvertta in reply to LemonZest11]

Thanks. She is aware. For some mystery, her office cannot satisfy the Actemra program with the EAP form required. 3 weeks of struggling to get that paper. Anyway. I had a blood test yesterday. ESR 2. CRP .6. Same as august when I had weekly injections. So that’s good. I have an in person meeting October 14. My WBC and neutrophils are low.

[christine2715]

I moved from weekly to four weekly over a long period. I then had my injection two weeks late due to mix ups, so 6 weeks and this caused a bad relapse which took months to sort out. Hope this helps.

[alvertta in reply to christine2715]

Thanks. So far I seem ok. Just major fatigue.