Saturday, February 13, 2010

Thinking Ahead . . . .

Since December, I think we've been to Hershey at least seven times (and only to Chocolate World once!). We go back again next week. I'm glad it's not all that far away. Last week, we saw the ophthalmologist and heard that there is no improvement in the inflammation in Anna's eyes. So we added steroid eye drops for two weeks. We also added 10 mg. of oral Methotrexate (and the Leucovorin that comes along with prescribing Methotrexate).

Yesterday, we had an appointment with the pediatric rheumatologist and discussed a game plan for the future. Reasoning: while the steroid eye drops will probably bring some improvement, the inflammation will most likely return once we stop the eye drops. Since Anna is not a "full-sized person," there's real hesitation and nervousness in prescribing an adult-sized dose of Humira (once a week instead of the current every ten days).

Some key things to seriously consider:
  • Is Anna metabolizing Humira quickly? Children often metabolize medications more quickly than adults. To know the answer to this question, we would need to know how to evaluate the levels of Humira in her body. The ped. rheumatologist is going to see if there's a way to measure this with labs. This knowledge would reveal whether it's safe to prescribe a more frequent dose of Humira.
  • Information regarding Humira in the last six months has been positive, while serious concerns continue with Remicade, so much so that Anna's rheumatologist is hesitant to prescribe Remicade for any of his patients (I hesitate to share this, because I know several friends whose children are currently being treated with Remicade---but this is what I was hearing.) For Anna, the choice of Humira has been okay so far. (Even though she did get quite a localized rash again after her last shot.)
  • There are two relatively new medications/therapies which may be considered for Anna should we need something other than Humira. The one is Orencia (infusion). I can't recall the name of the other at this time (I'm getting older, and my mind can only retain so many details in one day!---next time maybe I'll remember to write it down). I do know that it does not suppress the immune system. But the explanation of how it works made it sound like it would be very expensive.
  • Steroid eye drops should not be ruled out. While some would rather not use these in cases like Anna's, because of the increased risk of cataracts and glaucoma (especially at such a young age), these risk factors can be addressed with surgeries if necessary. Many of the new medications have much more serious risk factors (including malignancies---ones not normally seen in children). Anna's eye inflammation is not really bad---it's mainly just stubborn. Is it wise to go for the "really big guns" with such expensive and risky medications (when we don't have a whole lot of information on their track record) when steroid eye drops could keep the inflammation down? This is a very serious question. At least one reknowned eye specialist would rather prescribe the steroid eye drops and "deal with the morbitity that we know rather than deal with the morbitity that we don't know."
So that's about it for an update. Just a lot of information to sort through in my brain and think about. My own personal feelings are to go with the steroid eye drops if they will work. Anna is twelve---less than six years until she's eighteen. Sometimes in the back of my mind I wonder if later in life, we'll find that taking Humira affected her body in some way. There's a lot of history and data for Methotrexate, so I don't worry so much about that.

But in the end, as I think through all of these things, knowing that we've been praying for wisdom and direction all along the way, taking in as much information as our brains can handle and then going with what we "feel in our bones" to be right and coming to peace with those decisions, I have to rest in the knowledge that we are doing the best we know how. As I say often, my children belong to Jesus before they belong to me. Every day is a gift, and the future is not to be faced with fear. (Typing this helps me to remember this truth.) God is ever present through all of this, and we can trust Him without reservation to keep His promises, including the one that says "All things work together for good to those who love Him and are called according to His purpose." I have seen this promise fulfilled in some of the most devastating tragedies and sorrows in life (even just in this past week).


Liz said...

I'm sorry that Anna's uveitis continues to be a problem. At least her docs are thinking ahead and preparing back up plans in case they are needed.
Emily has been on Orencia for almost two years now with positive results (but for joints, not eyes) and absolutely no side effects. If you need to make the switch and we can help with anything just let me know.

Anonymous said...

It is useful to try everything in practise anyway and I like that here it's always possible to find something new. :)

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Hua said...

Hey Tammy,

I'm sorry Anna's condition is acting up. I hope you find the answer you need.

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Director of Blogger Networks

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