Wednesday, January 12, 2011

The new "Game Plan"

Today we went to see her Rheumatologist for her 6 week follow up…good news is her currently affected joints aren’t worse; bad news is they aren’t better.  It also looks like her elbows are becoming a problem.

We went in for her labs last Friday and her Sed Rate was down to 30 (from 38) and her platelets were down to 506 (from 560), so contrary to my belief the Naproxen is doing something, just not enough.
Bevin being nosy while waiting for our appointment to start

So this morning, after getting called back to our appointment a half hour late, we have a new “game plan”.   After going thru all her joints again he reviewed her labs and let me know the Naproxen wasn’t quite doing what he hoped it would and we needed to go over our other options.  He went over all of the drug options out there and their side effects, recommending Methotrexate (MTX) as his #1 choice, which after the research I’ve done and what her pediatrician told me, that seems to be the most common. 

The main side effects we discussed were:
1.      Nausea/Vomiting-he said this occurs in 1 of every 10 patients and said he sees it more commonly when taking the MTX orally.
2.      Mouth Ulcers
3.      Hair Loss-he said this happens about 1% of the time and is reversible.
4.      Birth Defects
5.      Liver and kidney damage
6.      Lung damage-he said this is rare in children and seen more commonly in adults, especially ones that have smoked.
7.      Possibility of cancer down the road

The MTX comes orally or injectable; due to him saying he doesn’t see the nausea as much in the injectable, and because we’ve dealt with insulin in our household (I had gestational diabetes) I felt confident we could handle the injectable version.  He is also upping her Naproxen from 3ml to 4ml; little does he know that per her pediatrician’s recommendation after she was on 3ml for a week we went to 4ml, so she’s actually been on the higher dose for 5 weeks.  Since he’s retiring I didn’t feel the need to tell him I went behind his back and got another opinion, we won’t be seeing him again anyway.
She couldn’t get out of there fast enough

So one more week on the just the Naproxen and then next week we will be adding in the MTX injections once a week.  We will be changing her lab work from every 6 weeks to every 4 weeks while we find the right dose of MTX for her.  Once she’s on a stable dose the labs will be done every 3 months.  We will also continue her Ophthalmology appointments every 3-4 months.

I knew the MTX was the next likely step for Bevin between researching, talking with other JRA parents and speaking with her pediatrician, but I still cried on the way home.  It just makes it so much more real that we are in this for the long haul…
Crashed on the way home

4 comments:

  1. I hope adding in the MTX will help her. She is so cute. I HAVE to say, Bevin reminds me so much of Meghan. Meghan also is sweet, quirky and short tempered. And the look on her face crawling out of the crib...spot on to Meghan.

    I can tell Bevin is such a strong little girl. Sometimes I think this is harder on the parents then it is for them. But then again, going through what they go through, blood tests, doctor visits, injections, etc., how can they be anything but strong!

    If you need any needles or syringes, I have tons left over from when we did the steroid injections on Meghan. Also, we have some numbing cream to put on the site about 40 min before hand. Totally helped Meghan.

    Take care Nicole. Praying for all you guys!

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  2. Okay first of all thats not "nosey", it's curious :) Second, this is ALL too familiar. You are walking the same path we did 2 yrs ago. Her doc she saw back then thought that just NSAIDS would be enough. She quickly got worse. At the time I had NO clue what we were up against. You are blessed to already have this great community of Moms to help guide you. Prayers for Bevin as she starts her new med and (((HUGS))) for the rest of her family.

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  3. I was devastated when we moved to MTX. It just seemed so invasive. It took about 4-5 shots to not feel like we were killing our child, for her to settle down. We adjusted after that. When Enbrel was added, again I was devastated. I desperately wanted help for her, but again such powerful meds. It gets easier. I try to hope for the best, expect the worst. That way I won't be as disappointed. Good luck with your first shot night! And no matter how much she screams and may make you feel like a bad guy, YOU'RE DOING THE RIGHT THING!!!

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  4. Sorry to hear Bevin has to move onto MTX. It is a difficult step to move onto this, but it is the right one. It is so important to be aggressive! She will do great with the med. I was scared to death when my son had his first dose. He has only been on oral. The only real side effect he had was mouth sores. He was given Leucovorin(like folic acid) and he didn't have anymore. Remember it can take over a month to see results. Good luck with the first injection. Like Danielle said, remember you ARE doing the right thing. We are all here if you have questions!

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