Treatment of Systemic Onset JIA with Actemra (Tocilizumab)

[Siva_Uddanti]

My 2 year old Son was diagnosed with Systemic onset JIA on in June 2017.

Though the symptoms started few days before diagnosis, pediatric rheumatologist started treatment of SoJIA after ruling out septic arthritis.

NSAID - 2 weeks

Predinsolone - 4 weeks ( 2mg/kg/day)

- Now in tapering stage

Solumedrol - 30mg/kg/day - 3 pulses (11th Aug 17 to 13th Aug 17)

After having no improvement, Dr prescibed for IL-6 blockers (Actemra 12mg/Kg for every 2 weeks)

1st Injection - 17th Aug 2017

2nd Injection - 1st Sep 2017

Now his condition is improving. But he is complaining joint pains occasionally, though there is no fever.

Kindly provide some general information

1.) Any case studies of Actemra / medicine for exactly 2 year old child SJIA ?

2.) what are chances of remission & how many injections may be needed before remission?

3.) what is chance of re occurring of symptoms after some time in teenage/adulthood ?

4.) Any specific diet will improve his condition ?

Please provide maximum possible information, as I am not able to see any efficacy of medicine for 2Y children in net

Thank you very much in advance for your kind cooperation.

[Daniel-Madge]

Hello, first and foremost I am sorry to hear that your child has been diagnosed with JIA. I am replying as a parent of two daughters both with JIA and both diagnosed when they were 18 months old, not as a doctor.

Actemra is an immunosuppressant so will help control the condition. Everyone reacts differently to medication so it is a process of skilled trial and error in finding the right medication for your child. Many children use a combination of what are sometimes referred to as biologics and methotrexat.

however, my understanding is that the drugs that can effectively control the condition A&E different from the medication used to reduce inflamation, so some children will require steroids or non steroidal anti inflammatories for a short period of time as well as the immunosuppressants. These are either tablets or injections.

Coming off the immunosuppressant medication will be a judgement call for you and your doctor. The medication controls the symptoms so you only know if you are in remission by withdrawing the medication and waiting to see what happens.

Finding papers will be difficult on the web but the medication is pretty effective for most people. It is a case of finding the right drug or combination for your child.

With modern medicine about 70%(?) of children can go into permanent remission by adulthood. However, it is considered to be a chronic condition so we tend to describe it to our kids as a condition they will always have but which may not be active as they get older. My older daughter has adopted the mindset that she will always have it and any remission is a bonus.

We have received conflicting advice on whether flaring is more common in teenagers. The most common advice we have received is that flares can be triggered during puberty

The diet debate is pretty conclusive. The prevalence rate of JIA is the same all over the world including all cultures and all dietary regimes. So diet is very unlikely to have any impact. However, this is not to say that your child does not have an alegy to any food source. Certainly my one daughter is dairy intolerant and the other gluten intolerant but this does not affect their arthritis.

Re joint pain. This can have two causes. The inflamation which sounds as though it is being treated and muscular. When children are in pain they tend to be less active and during this time are not developing their muscles. It might be worth asking for some advice from the physio team when you next speak to the consultant.

You might want to check out NRAS and CCAA on the web. They both provide useful support for families and some family information days and weekends. We have all found the support of other families invaluable in understanding what can and can not be achieved.

Best wishes

Daniel

[Siva_Uddanti in reply to Daniel-Madge]

Thank you very much Daniel for detailed reply.

He is going for 4th Inj on 29th Sep.

[Siva_Uddanti in reply to Daniel-Madge]

Btw, he is also on Methotrexate from past 3 months (weekly once subcut)

[Siva_Uddanti]

Till date he has completed 6 injections of Actemra. Still he has symptoms of fever of 100C to 102 C (once in every 2 weeks - between 2 injections period) & severe body pains during fever

Now Doctor is suspecting, his symptoms can be ERA (Juvenile enthesitis-related arthritis), which is like Ankylosing spondylitis in children- as he is HLA-B27 positive & father is confirmed patient of Ankylosing spondylitis.

Still we are in process of diagnosing the type of JIA & more worried about children health.

[Siva_Uddanti]

Now my son is still on Actemra from past 2.8 years for every 3-4 weeks and disease in active condiiton. Can some one please suggest, howlong Actemra can be given (max doses/ max duration of years) ?