Newly diagnosed son

[Asiatoby]

Hello everyone! My son was just diagnosed yesterday with JA. He has bilateral sacroiliitis on MRI. The dr wants to start him on Humira and honestly it really scares me after reading all the warnings about infections, cancers etc. Anyone have any experience with it they’d like to share? Thank you. I appreciate it. My husband and I are overwhelmed with info!

[Montaha]

Sorry to hear about your son diagnosed.i can understand your feelings,my 11 years old daughter diagnosed with arthritis on March the dr. gave her Methotrexate injuction 17.5mg but it doesnt helped her so she changed it to amgavita 40mg she took 2 injuction .we are waiting for the dr. To check her .

I think all kind of midicatio used for JA has side effect .we hope your son will be fine with the treatment he is taking.Good luck

[Daniel-Madge]

Hello, sorry to hear about your son. We have two children both with JIA. The information can be overwhelming. I can only speak from personal experience but arthritis in kids is not that rare. About q in 1 in every thousand. So there are some well established support groups. clearly you have already found NRAS who (before Covid) have run some family days. There is also CCAA who run family weekends. And have recently incorporated a number of local support groups which can be found on their web site (children’s chronic arthritis association)

Unfortunately Covid 19 has impacted on lots of the usual activity.

We have found it really useful both for us as parents and for the kids themselves and their siblings to meet other families in the same situation.

Other people are a mine of useful lived experiences. Personally I find talking to people much easier than trying to wade through all of the research. That’s where the doctors and specialist nurses come in really helpful. Whenever we have specific concerns re side effects or treatment the specialist nurse is generally our first port of call. Try and build a good relationship with them.

The new medications like humira can be very effective. But this really needs to be a discussion between you and your sons consultant. No medication is without some form of side effect, it’s always a trade off between the medicaion and the disease. My only advice on this, as a parent, is make sure your son is seen by a paediatric rheumatologist, not a GP and not an adult rheumatologist. Paediatric rheumatology is a specialism in its own right.

Having been around kids with arthritis for the past 15 years I never ceased to be amazed by how durable they are and that the disease need not be a barrier to a great life.