Sunday, January 8, 2012

It's Jordan's body

As you may or may not know, Jordan has been in this on and off flare for several months. Labs and swelling are creeping back up. Her PT noticed swelling I didn't see a few weeks ago. We were told no at home PT while she is swollen but we do have 1 exercise to do to try to avoid contractures. We've both been doing them. I don't want contractures either!

We've been talking about med changes for a few months. With the last set of labs showing an even higher ERS then the previous one 4 weeks earlier, Dr. G had suggested switching J to Orencia. J's eyes have been responding to Remicade but the last 2 times she's seen the optha she has had a few inflammation cells floating around. My fear is that she's building up a resistance to Remicade just like she did Enbrel and Humira. In June 2011 we took J off MTX and started CellCept. If you've taken MTX or know someone close who has you know it's not a pleasant drug. Jordan could no longer tolerate MTX so it was best if we tried something else.

Dr. G called me last week to suggested Arava or Orencia. J has an appointment on Tuesday so we had a few days to think and research the meds. I already knew I didn't like Arava but I decided to research it more. I'm not putting my child on that. No one can convince me to. Orencia, it's new but it's a biologic so the side effects are very similar to the ones she's been on before. It's hard to make these decisions for your child. We really don't know what the long term side effects of these medications are. But, what choice do we have?

I talked to Jordan about her options and at first she said, "I don't want to take ANY of them. I want to stop ALL of the medicine." That's not an option and she knows it. Later that night or the following day she told me she wanted to stick out her current meds until Spring. She's been sick on and off so she's thinking her swelling and elevated labs could be because of the illness. She could very well be right.

So, as of right now, nothing is going to change. Of course, if she gets worse then we will move on to Orencia. Praying we won't need to.


Anonymous said...

I'm an adult with RA that has benefited from Reiki Therapy because it can be hands on or hands off and if I am in a flare...the hands off reiki feels good. Do some research on might help Jordan when she can't have PT

Wayney said...

Like you, my Mom let me make a lot of my own decisions on my meds etc. My docs gave me the info I needed to decide. But, I was treated when gold salts were standard for kids with severe JRA. My treatments were to be on study drugs for kids. I was only on ibuprofen and naproxen as a kid, no DMARD. So when I decided to stop taking the naproxen, my Mom supported it. Knowing what I know now, I don't regret my decision since we know NSAIDs only help control the symptoms not the disease itself. I applaud you for making Jordan part of the decision making.