Monday, March 16, 2015

We knew this day may come...

We knew there may come a day that we'd have to give Lucianna her medicine by injection.  It seems that day is here.

At Lucianna's doctors appointment last week, it was discovered that she still has mild inflammation in her left eye after weaning her off the steroid drops once again.  This really came as no surprise to us since it's been the pattern for the last eight months.  We decided in December to switch to another ophthalmologist since our current doctor didn't have any concerns with repetitive use of steroid drops to quiet inflammation, despite the complications with long-term use.  Some of those complications are cataracts, glaucoma and other damaging effects.  Lucianna already has one cataract but luckily the location of it doesn't jeopardize her sight.  The new doctor has recommended that we increase the Methotrexate.  Lucianna is at the max dose now and we are very concerned about the risks to the function of her liver more than ever, and so is her rheumatologist.  

So we are at a crossed we increase the Methotrexate and hope that it doesn't cause her liver to stop functioning the way it should?  Do we add another medicine with it's own set of risks?  Do we switch from oral Methotrexate administration to injecting Lucianna?

Many of our other drug options are stronger and have risks that would make any parent cringe.  Risks like, Lymphoma, Skin Cancer or seizures.  We learned that Methotrexate given orally loses up to 20% of it's effectiveness, maybe more.  There is no real clarity on how much is absorbed and how much is not.  We knew this when we started Lucianna on it at 3 years old, but opting to give her weekly shots was not very attractive to us.

So this Thursday, we meet with the rheumatologist to discuss this plan.  Both the ophthalmologist and rheumatologist are on board and agree that moving to the injections is a good idea. On Friday, we will get training on giving her a shot and more training the next two Fridays.  This Friday, will be her first shot, likely given by a nurse and then I will be taking over. It's a common occurrence for kids to develop anxiety on shot day, my hope is that Lucianna will roll with it.

Lucianna will be closely monitored for the next several months to ensure the dosage (a bit less than usual) is enough, and she's improving.

Wish us luck as we embark into unfamiliar waters.  If I had to guess, I think Lucianna's Mom is going to struggle more with the shot than Lucianna will!

Lucianna's Proud Mama

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