The First Infusion

My first Myozyme infusion went really, really well. I didn’t even get a bruise from the IV. It was just an extremely long day.I had to arrive early in order to take a pregnancy test as they won’t administer the drug to anyone who is pregnant because they don’t know what the risks are to a fetus. So after we finally got the test results the pharmacy could then prepare the Myozyme. It takes an hour to mix and because of the expense they have to shut down the entire pharmacy during this time. The IV bag of Myozyme arrived to the infusion center around noon where they had already inserted my IV and had kept my vein open with saline while we waited for it to arrive. They hooked me up to the Myozyme and the actual infusion was complete in 4 hours. They took my vitals every 30 minutes and my blood pressure and temperature remained consistent throughout. I didn’t feel a thing. The Myozyme was not cool or hot coming through the IV, it didn’t feel any different than the saline. It looked light blue coming through the tubing, they could have been infusing me with blue Gatorade for all I knew. After the infusion was complete they flushed the tubing with more saline to ensure I received all of the Myozyme and then I was monitored for two hours to make sure I didn’t have any adverse reactions.

Next time it shouldn’t be such a long day as they won’t have do a pregnancy test and they won’t have to monitor me for two hours after the infusion. My next infusion is scheduled for March 29 (and theoretically every other Monday after that).

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5 comments

  1. Glad to hear it all went well. I started reciving ERT in November of 2009. I still have to be monitored for 2 hours afterwards. They said I will be able to reduce to 30 minutes after 6 months.

    1. I was swapping facebook msgs a few months ago with a lady that is on ERT and had a healthy daughter a couple years ago. Apparently the first one while the mother is on ERT.

      1. Interesting. Where does she live? There always seems to be something new in the Pompe world. While it does suck to have Pompe, it is a very interesting and exciting time from a research point of view.

  2. She is from Sweden and said that there are 10 people there with Pompe,,, all are on ERT. She was diagnosed in 2004, a year before I was. You’re right, it’s interesting to find these things out. It really helps to hear encouraging things like this.

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