Tuesday, October 18, 2011

Soliris is working against aHUS

Things are on the uptick folks.  We had a great appointment today with the Hematology team this morning and the Readers Digest version is things are doing really good.  Now to get long winded...

Aimée had a Hemaglobin of 7.1 (low is anything below 10) on Sunday as it was still traveling down from last Monday.  The Plasmapheresis wasn't doing it's job holding off the aHUS-TTP to much other than a slow decline of Hemoglobin and red blood cell loss (I've been told by the Doctor to just say aHUS {link} as it is more accurate).  However, we finally got that drug Soliris on Friday, but becuase Aimée was so unable to sleep all week becuase of the worry of all of this, we didn't see the Soliris start working until Monday's blood draw.  Without taking any blood products her Hemaglobin JUMPED up to 9.4 all on it's own on Monday's blood draw (THAT'S HUGE FOLKS).  Today's appointement with Hematology showed that ALL levels are coming back to normal levels without any extra medicine/treatment.  

So for the next 3 weeks she will have the Soliris treatment on each Friday.  Note: I've been saying shot, it's actually given to her in an IV at the hospital over 35 minutes and she has to be monitored for 1 hour afterwards.  After the next 3 weeks, she will change to bi-weekly treatments (it does not spread out any further than that).  They MUST be at UNMC and can't be done at home due to the precautions to make sure her body doesn't have any issue with the medicine.  If we are ever away from the hospital for more than two weeks (or when it is due) we have to work out a way to find another hospital to give her the medicine and then get it approved through the insurance (I think this just means we are going to have to plan anything REALLY well).   The company ships a supply to the hospital and we just HAVE to get her there on time each time.

She can never stop the medicine until they find a cure for the aHUS.  The Doctor today explained it really well.  'The aHUS is a fire, the match is the transplant drugs and the gasoline is her blood (the hemoglobin).  The Soliris works as a cap between the blood and her transplant medicine.  It just keeps the two apart from each other, it does not cure it.  Until there is a CURE for this, we just have to keep taking the medicine.  She can't stop taking it because both the match and the fuel are still there and they will come back with a vengeance.'  The Doctor explained that during the trials one patient didn't take their medicine due to a vacation and it caused severe issues, other than that it has a 100% success rate.

So the Soliris (aka eculizumb), the doctors told us it was expensive but I was surprised how much.  According to Forbes Feb 2010 article (link) it is the SINGLE most expensive medicine in the US.  It will be billed to the hospital for $20k a treatment which comes to more than $500k a YEAR.  UNMC still has to bill the insurance so we will see what that turns out to be, but each visit is a new car.  I sure do love me some Tri-Care because we have no co-pay for this!  So totally worth all the TDYs/Turkey/Afghanistan trips to get Aimée better!  

Other than that we are just relaxing.  The last hospital stay took it out of Aimée so we are just taking it easy.  Kids each have parent teacher conferences tonight and tomorrow so we are going to do that.

1 comment:

  1. Hi Dave and Aimee,

    I just am getting home from my conference and catching up on what Aimee and her misbehaving organs have been up to! That is some crazy stuff!

    I am so sorry that this is so difficult for you all and I know how lame that sounds as it doesn't even begin to describe what you are experiencing. I just can't even imagine. And I thought trans ant drugs were expensive !!!

    I wanted to let you know you are always in my prayers and I am keeping up on your adventures through medicine land.

    Thanks for keeping everyone in the loop Dave. Amiee, you are my hero!

    Hugs, xoxo, Nancy

    ReplyDelete