Actemra and some info

I have found this article in Arthritis Today Magazine and thought I'd share it. I copied it and now I will past it.

Actemra Approved for Severe Juvenile Arthritis

Already approved for adults with rheumatoid arthritis, Actemra is now FDA approved to treat kids with a rare form of the disease.

By Jennifer Davis

4/20/11 The U.S. Food and Drug Administration has approved the biologic drug tocilizumab, or Actemra, for systemic juvenile idiopathic arthritis in children older than age 2.

One or two out of every 1,000 children have juvenile idiopathic arthritis, and about 10 percent of those children get systemic juvenile idiopathic arthritis, or SJIA. It is distinguished from other forms of juvenile arthritis by serious inflammation in the bloodstream that can affect internal organs and cause high fevers and rashes.

An FDA spokesperson says Actemra is the first therapy approved specifically to treat systemic juvenile idiopathic arthritis. Other drugs approved for juvenile arthritis – like Enbrel, Humira and Orencia – have been used to treat SJIA, but they don’t always do enough to mitigate the effects of SJIA.

Actemra is a relative newcomer to disease-modifying arthritis drugs; in early 2010 it was approved to treat adults with moderate to severe rheumatoid arthritis who did not respond adequately to TNF-alpha blockers like Enbrel and Humira. Instead of targeting the inflammatory cytokine TNF-alpha, Actemra is the first drug to block the inflammatory cytokine IL-6, or interleukin-6, which also plays a key role in driving the inflammatory process.

“The immune system in the body uses certain molecules, like TNF, interleukin-1 and interleukin-6, to create inflammation,” says FDA spokesperson Morgan Liscinsky. “Not all inflammatory diseases have inflammation that is driven by the same process, so they may have different responsiveness to treatment with agents that block the specific inflammatory molecules.”

Actemra’s approval for children comes after a multi-center study on 112 SJIA patients between the ages of 2 and 17. Every two weeks, half the participants were given Actemra and the other half placebo. Eighty-five percent of those who got Actemra had at least a 30 percent improvement in their symptoms over the previous week, compared with 24 percent of patients in the placebo group.

Actemra is administered as an infusion. The most common side effects that occurred in at least 5 percent of patients were upper respiratory tract infections, colds, headaches, sore throat, congestion and diarrhea. 

Three participants also developed the potentially deadly condition known as macrophage activation syndrome, a complication of systemic inflammatory disorders in children that involves overactive immune cells. But FDA officials say the incidents weren’t higher than what is generally seen among this specific patient population. 

Barbara Adams, MD, director of pediatric rheumatology at the University of Michigan Health System in Ann Arbor, says she regularly sees the effects of SJIA on children and welcomes anything new that might help them.

“I think that any new medication for childhood arthritis, particularly this type of potentially lethal childhood arthritis, is good news,” Dr. Adams says.

The FDA recommends that children taking Actemra are monitored with regular blood tests to make sure there are no adverse side effects related to liver function, blood components or cholesterol.

“When a new drug comes out we know what it’s done in the test but we don’t know what it will do day-to-day,” Dr. Adams says. “We need the experience of seeing more kids use it. We need to understand as pediatric rheumatologists how to use it in the most effective way and in which children it will be most effective.”


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Actemra is an immuno-suppressant and therefore we need to be extremely careful that Zoe is kept away from other illnesses. As her Lungs suffer already from the disease and is not helped by the fact that she gets colds continuously after treatments. Where a "Cold/Flu" is very annoying to the normal population it can become potentially lethal  for Zoe. Being around other children (including Paul and Mia) who have just had a Live Vaccine is a big No NO! .... but how do we bring that subject up with people we don't know? Our families know and so far have taken precautions (phone call) to make sure we are not around them at those times. 

We are very aware that some children get sick with a live virus and don't even know it because of the incubation period and we can not prevent every illness getting in contact with our family but we do everything possible!  


Her Doctors are saying that Actemra is not working 100% and we may have to start her on Methotrexate which is small doses of Chemotherapy, which Willy and I would administer once a week at home (Needle). I am hoping we do not have to go down this path however! We will find this out on the 24th of August when we go back to Necker Hospital in Paris... As I explained in another post, Zoe is being treated in Troyes but they can not make decisions on her treatments and so forth. Her specialist in Paris is the only one who can make those decisions! 


I have now given a back round of the disease, treatment etc... Now I will concentrate on our family and our struggles.