“Hizentra Belly”

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    • #117941
      Shawn
      Participant

      I’ve been on Hizentra subcutaneous infusions (36 GM/180 ml) for a couple years now and I generally infuse 5 needles in my abdomen, because I either have thin skin elsewhere or can’t reach other standard infusion sites without spasming and cramping. The results are great – more energy without the roller coaster effect. And, while I have actually lost some weight and strengthened some muscles, my belly has become very flabby. Sagging flab, but not necessarily “fatter”.

      Recently on our GBS/CIDP Exercisers Facebook group, someone mentioned “Hizentra Belly”. Others chimed in and mentioned they’ve experienced the same thing. I’m wondering if others have had the same experience, what they’re doing to address it, and if anyone has discussed it with the manufacturer. I guess I will, if nobody has. Thank you!

    • #117943
      Jim-LA
      Moderator

      One of the reported side effects of Hizentra is loose skin after long term use. Perhaps that’s nicknamed Hizentra Belly? It is considered a very infrequent side effect and does not pose a health risk.

      Firming creams that contain retinoids and hyaluronic acid may help tighten the loose skin.

    • #117944
      Shawn
      Participant

      Thanks Jim. Do you infuse with Hizentra? Do you suffer from loose skin too? Did firming creams work for you?

      HyQvia is another subcutaneous IG product being approved for use with CIDP patients. Instead of weekly, HyQvia is infused monthly. It seems to me the less frequent infusion may result in less loose skin. My former infusion nurse reached out to tell me she has patients who are using it with great success.

    • #117946
      Jim-LA
      Moderator

      I have never used Hizentra, Ig doesn’t work for me. Plasma Exchange and corticosteroids is what helped me.

      Here is a comparison of the various Ig products:
      https://primaryimmune.org/wp-content/uploads/2017/02/IVIG-Chart-2.2017.pdf

    • #117969
      David Portinga
      Participant

      I have a large belly, but we assumed at first that it was all due to being on Prednisone for a long time. I was on Hizentra for 22 months, and it could well have compounded the problem However, the Hizentra created a different problem – it made my belly fat so dense that I had to quit using it due to plasma leakage, bleeding and bruising. (I had to go back to ivig.) I am hoping that going back to ivig will eventually allow the belly fat to soften up, but in 2 months so far, that hasn’t happened. I don’t think that I would go back to Hizentra, however.

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