Sursum schreef op 9 november 2017 08:51:
Hier de samenvatting reeds gepost op 3 nov. op het "hoofd draadje"Het heeft even geduurd maar “Loukisha” heeft eindelijk Ruconest geprobeerd. Dit is haar ervaring:
Loukisha's Story (Facebook)
In the past few days I've had the pleasure of speaking with my Nurse and Nurse Case Manager from Ruconest Patient Solutions. I'm pleasantly surprised concerning, their thoroughness in talking prior to all agencies, before they called me. I have an unusual names and they both said it correctly. Throughout the conversations you could see they take their jobs seriously, however they both had warm and pleasant dispositions. If their demeanor reflects the nature of the company, I look forward in establishing a rapport with them. “Het Ruconest team lijkt het goed te doen!”
Oct 30, Today is my first infusion of Ruconest
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. While the other C1 manufacturers were scrambling, to meet the needs of the, HAE community 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.“Ruconest wordt goed ontvangen (ook af te leiden uit de konijnen grapjes) en geeft vertrouwen m.b.t. tot levering!”
Nov 2, the Ruconest infusion went pretty easily. I beat the burning at the pass with ice packs, and lidocaine cream. Dizziness isn’t much of an issue anymore. I have some mild nausea and a very slight headache. All in all Ruconest has turned out to be a great decision for me so far. I don’t anticipate that changing, anytime soon. Also I have not been hopping around or demanding excessive amounts of carrots.“Loukisha is overtuigd!”