DramaSe schreef op 31 oktober 2017 08:33:
Wellicht interessant een blog via facebook over gebruik van Ruconest:
What the French Toast! We’re doing Infusion Monday during the day and not evening. That’s crazy I know, as we take a walking on the wild side. Today is my first infusion of Ruconest, and we were grateful to have Marcia ( she’s my RN) walk us through the process over the phone. Marcia was awesome! She explained everything well, and she has a great sense of humor too. My husband and daughter were with me, and it was fast and easy to reconstitute the Ruconest. Earlier I applied my lidocaine cream to numb the area. I noticed that it had a slight burn during infusion, however an ice pack on the needle site lessened the tenderness. I was mildly dizzy, nothing compared to how I would feel after my Cinryze or Berinert infusions. After the infusion was done my husband and kids asked me if I felt the urge to hop, twitch my nose, or devour large amounts of carrots. LOL
I wanted to share some information with you, that I learned while educating myself about the C1 HAE medications that are available to the public. Comparing the amount of C1 in Cinryze and Berinert to Ruconest is very interesting. One vial of Ruconest has 2,100 units of C1, while 3 vials of Berinert or Cinryze contain only 1500 units of C1. I also learned that it takes 15 human donations of plasma to make 1 vial of Haegarda, it takes 3 to 5 human donations of plasma to make 1 dose of Cinryze and it takes 5 human donations of plasma to make one dose of Berinert. If there’s a shortage of blood donations, coupled with the needs of other patients with different diseases it could raise the issue of manufacturing HAE C1 therapies. As the other C1 manufacturers were scrambling to meet the needs of the HAE community during the shortage, Ruconest is the only company not experiencing a shortage.
I hope that my descriptions of my first infusion with Ruconest was helpful to you. I look forward to not worrying about the supply and demand problems of this shortage. I know our level of stress has lessen greatly since making the switch to Ruconest. Well now it is your turn your Ruconest stories. I would really like to hear about your experience, because everyone has a story to tell, don’t be afraid to tell yours.
** Humming the Bunny Hop song as I get a drink of water **