Debbie Zirpolo

Your Replies

  • June 29, 2019 at 5:46 pm

    Kathy, where are you located?

    June 29, 2019 at 5:39 pm

    In our area there are NO brands available. No one is getting their IVIG at our large health system in coastal southeastern Virginia. The last appointments where any IVIG products were available was the first week of March. I have been in touch with my neurologist as have the other patients and they say their hands are tied. I have written to CSL Bering who produces Privigen and have received no response. I have been a registered nurse for 35 years and can not believe this is happening. I made the initial post because i was surprised there was nothing being posted here and I questioned the facts we were being given. It is hard to spend 18 days a year (once every 3 weeks)in an infusion chair but when it gives you the ability to function it is all worth it and I have felt blessed that there was treatment. I always worried about the expense of the product and if my insurance would ever deny covering it but never that it would be no longer available. I appreciate your suggestions but we all seem to be at an impasse in our area. The hardest part is none of us had any warning or idea they there were issues until we received a call the day prior to our scheduled treatment that there was no product available and when it does become available (they have said the end of July at the earliest is a remote possibility) outpatients will be the last to be scheduled to receive it. The anxiety this has caused just exacerbates the symptoms caused by the MMN in the first place. Feeling frustrated.

    June 7, 2019 at 8:27 pm

    Thank you Jim. I had already researched and read all of those. I take Privigen which is not on the shortage list. In fact, according to the ASHP website Privigen is currently available.

    What stood out to me is that I am not seeing or hearing from others requiring IVIG treatments that are having the same issues. In my area they have stopped treating all outpatients requiring IVIG of any brand. They cannot tell us if or when our treatments will resume. Is anyone else having these issues?

    Debbie

    June 7, 2019 at 10:36 am

    I was officially diagnosed with MMN in 2014. That being said, I had unilateral symptoms since 2004 but was misdiagnosed and even underwent a left ulnar nerve surgery in 2005 that was totally unnecessary. I have been receiving IVIG since 2014 and have learned that slowing the rate of the infusion and spreading it out over 2 days helps tremendously with the side effects. IVIG has allowed me to keep working. However, my treatments have recently had my treatments cancelled as my infusion center CANNOT GET IVIG> and all IVIG patients are being cancelled!! Anyone else have this issue??? I always worried about the insurance and cost of treatments and never about having supply issues!! No one at our facility seems to know when they will be able to get more IVIG and reschedule treatments. Debbie