Hi!
I'm 25 years old and I was diagnosed one year ago, after having experienced a very acute-onset of what is now diagnosed as "sub-acute CIDP". I've been receiving Ivig-infusions for a year and I've made some great progress (I've gone from being in a wheel chair with no reflexes, to being able to run short distances with almost full sensation in my body)
My problem now is that my doctors are trying to convince me to try subcutaneous Ivig instead of the regular intravenous infusions. They are claiming that this will make my life easier due to the fact that I can administer the subcutaneous treatment at home, but I don't want to do that (for a plethora of qualified health-related reasons)
I know that these doctors are only trying to do this to"cut cost". Even though I've beeb on such low doses of ivig-g/kg the last six months (almost half of what is recommended when treating CIDP!!, meaning no more than 0,5g/kg), it seems that I'm not saving "our european tax-funded hospital" enough money.
With me being placed on subcutaneous ivig, they can save 3 hours of supervised medical treatment (meaning I use 1 bed for 3 hours and 3 hours of my nurses time + premeds + all of the intravenous equipment etc.).
I'm just so fed up, upset, and so heartbroken over the fact that my primary nurse and I have worked so hard (for an entire year) to figure out a treatment-plan that worked for my body and my CIDP.
Now, I'm back to being terrified and not knowing whats to come.
Have any of you tried subcutaneous Ivig? Was that something that you tried before or after trying Ivig?
What was your experience like?
I really would appreciate any kind of imput, because I'm really going to try to fight this.
//Sarah