Actemra info

[Spanky2019]

As I said in previous post I've had severe arm pain, fluctuating bp, dizziness & fainted a few times, extra heart beats. My labs came back almost normal today. ESR and CRP are normal, but arms are so painful. I'm sure I am in a flare. Rheumy wants me to see primary asap. Hmmm. Needed more info. So I called Genentech Pharmaceutical medical consultant. She said that section 12.2 of full patient prescribing information insert (on line) for Actemra says that ESR & CRP are influenced & decreased by actemra. CRP & ESRare not good indicator of inflammation for person taking Actemra. She said high or fluctuating bp is very common. I had her clarify a couple times. She said I could have flare & it won't show on labs. Thought someone here may be interested. BTW, I called the specialty pharmacy first. This is where I get Actemra, this pharmacists didn't have any answers for me.

[SheffieldJane]

I applaud your initiative Spanky! Now what’s to do?

[Spanky2019 in reply to SheffieldJane]

Rheumy's nurse called twice on Friday to say get into primary asap. I told her abt consult with Genentech & that I really think I need to increase pred to see if it helps arms. Said she would talk to Dr & get back to me. I'm still waiting. Also, I should go off Actemra to see if symptoms resolve. I'll give rheumy couple of days to respond. Also will make sooner appt with primary.

[PMRpro Ambassador]

I have said this several times on the forum to people whose doctors (and they themselves) have been celebrating their "normal" ESR and CRP. They cannot be relied on when a patient is on Actemra/tocilizumab. Prof Sarah Mackie in Leeds says she primarily uses symptoms to assess how the patient is. Nor, by the way, can the IL-6 estimation be used - the level in the blood rises a lot once you start the Actemra.

Nor do all patients get off pred entirely - only half manage that. This is because in GCA there are at least 3 underlying mechanisms producing the inflammation and Actemra only affects one of them - the others continue unaltered.

All this is clearly stated in the documentation for the study. Doctors are obviously reading the headlines and not checking the detail. If I know - so should they before presenting it to the patient as the 100% miracle answer to GCA. It is good - it isn't perfect.

[Spanky2019 in reply to PMRpro]

Thank you as always Pmrpro. It's hard to change & be more proactive & involved in medical decisionmaking, but it is the way it should be. I know doctors aren't always right even when they are the best docs, but very difficult to present info or an alternative to them. Stay safe.

[Hidden]

From the horse's mouth. I don't understand the main mechanisms fully but can at least see beyond the headlines and if I can read that then rhrumy should be able to. 👍🌻

[Spanky2019]

Can't assume the docs always know best. Finding the balance and realizing I'm the only one that has to live with the consequences of my docs decisions for me. Thank you for your continued support and advice. Stay safe!

[Rugger]

In the booklet provided to me when I started Tocilizumab, titled "My RoActemra", on page 13 it states "Although RoActemra can be used alone after discontinuation of steroids, it cannot be used on its own as a treatment for acute relapses." I assume this to imply that we need to adjust our pred intake if we relapse / flare? This might mean adding pred back in if we had got down to zero, or increasing the dose, if still on pred?

Best wishes and you stay safe too. 🦋