Anyone else affected by current IVIG supply issues?

Viewing 11 reply threads
  • Author
    Posts
    • #116413
      Debbie Zirpolo
      Participant

      Anyone other members having difficulty receiving their IVIG treatments due to shortage? I am in Virginia and we are told there is “no way to tell” how long the shortage will last or when our next treatment will be. Also told that “outpatients will be the last on the priority list to receive when supply issues resolve.”

    • #116414
      Kathy
      Participant

      Hi Debbie – The day before my infusion last month, my neurologist called to let me know that the infusion center at our hospital did not have my usual IVIG – Privigen. They had Gammagard and he ok’d me to get that brand. I was a bit unsettled about that, just due to some comments from others that did not do well with Gammagard. When I arrived at the infusion center they had my usual Privigen – Go figure. I’m not sure what to think about the “nationwide shortage”. I am scheduled for my next infusion on July 4th. I hope they have Privigen!
      I hope you are able to receive your IVIG and are feeling okay.
      Kathy

      • #116419
        Debbie Zirpolo
        Participant

        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.

    • #116415

      Hi Debbie:

      Here are the steps we recommend from the Foundation for someone experiencing an issue:
      · Talk to your prescribing physician if you are told you cannot get your Ig
      · Look into changing to a specialty pharmacy or switching to a different specialty pharmacy
      · Request different vial sizes (IE if you usually get one 30g bottle, see if they can give you 3 10g’s or a 20g & a 10g)
      · Worst case scenario, speak to your physician about switching brands

    • #116418
      LG
      Participant

      Has anyone at the Foundation heard about this? I have heard complaints from Massachusetts and Connecticut.

    • #116420
      Debbie Zirpolo
      Participant

      Kathy, where are you located?

    • #116422
      rolandruth
      Participant

      I’m in Illinois and have not heard of a shortage.

    • #116428
      rolandruth
      Participant

      I take back what I said above. I had a doctors appointment yesterday and my doctor actually brought up the shortage to me.

    • #116429
      Kathy
      Participant

      Hi Debbie,
      I am in Northwest Montana. Went for infusion yesterday, Privigen was available. I am so grateful. I hope your area has IVIG available now.
      Kathy

    • #116455
      Rebecca Stein
      Participant

      I am currently living in the Tampa area of Florida. I moved from the Philadelphia area. The plasma shortage has effected both areas and I’m told the entire USA. For the past year, I am switched from one brand to another depending on what is available. I have not been stable due to the constant flux. It’s been challenging and scary at times. I have been told there is not a date when the supply will be available again. I have been on Gammaguard, Octagam, Gammaked (which I had a reaction to) and now am getting Panzyga which is not efficacious for me. Doctors and Pharmacy are seeking another brand at this time.

    • #116457
      cer100
      Participant

      Im in the midwest USA and started hearing about the shortages this past month. Instead of a few large bottles, I got several small ones the last time. Otbers I talked with that seemed to be having more issues were using Gammagard

    • #116466
      Timothy Beaver
      Participant

      In the past 7 months I’ve been moved from Gammaguard, to Octogam, to Gammaplex. My neuro says she was given a “bump list” and was directed to re-evaluate patients for absolute need. I was moved from every four weeks to every six, but remain approved for treatment with IVIG. I don’t have more detail on who she got the list from, I didn’t feel it was my place to ask a question that seemed above my pay grade as a patient.

    • #116471
      Jim-LA
      Participant

      The FDA publishes a status of shortages (Gammagard is at the top of the list right now) and you can find more info about the Ig shortage here:
      https://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/cber-regulated-products-current-shortages

      An explanation of the shortages can be found in the following article:
      https://www.primaryimmune.org/news/ig-availabilty-issues

Viewing 11 reply threads
  • You must be logged in to reply to this topic.