Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

Hizentra start up

Hi all, still waiting for the Hizentra treatments to get started. I got a call from the new company pharmacist, who let me know that I would be getting 100cc (his exact words) twice a week. My wife, who is an RN, said that’s 40 grams a week. I think I might be jumping from the frying pan into the fire. Has anyone had that much Hizentra administered in a week before? Ugh, then the pharmacist tells me I don’t need a final ivig before I start on Hizentra, when Hizentra’s website says start within one week of your last ivig. It’s been four weeks since. I’m kinda lost as to what to do. I hope everyone is doing ok! It’s so nice to be able to talk with others going through the same struggles. Talk with you guys soon!! Jack

Hi Jack! I switched from Gamunex to Hizentra 4 months ago. Not only did I have a representative from CSL Behring there (the makers of Hizentra) for my first treatment, but also a nurse and my neurologist. I live in Germany and according to the professionals here, your first Hizentra treatment should be very soon (within a week) after your last IVIg as it does not work as quickly as IVIg does. Also, they have a starter set for Hizentra, which in my case was 20 ml=4 gm of Hizentra administered over 1 hour. I was eased into Hizentra over a period of a month. Since I had the IVIg treatment still in my system, I received the initial mini dose followed by 40 ml = 8 gm every three days for the next week until I reached 50ml = 10 gm every 5 days. It is not uncommon that they have to adjust your amount until you feel stable. In my case, I was increased to 10 gm every three days. I feel good at this rate. I would not be afraid about the 40 grams of Hizentra per week. If that is how much you need, then it is what it is. But, I would question not having an IVIg treatment before you begin with Hizentra. I hope you experience the same success as I have with Hizentra. If you have any more questions, just let me know. Jeezi

Hi Jeezi, I was able to have my last ivig exactly one week before I started Hizentra this last week. I’m taking 20 grams twice a week. I’m already on my own this next week. Thank you for replying!

Hi Buster, I hope your experience on your own went smoothly.

1 Like

Hi Jeezi, my biggest fear was having the intestinal fortitude to stick myself with four needles. But when they let me use numbing cream it became no big deal. I am getting rashes at every injection site. I gave myself a treatment on Wednesday and primed my lines too far, and started with wet needles, which the nurse told me would cause a rash. Yesterday I only primed the lines half way and still have rashes. We are thinking it might be an allergic reaction to the Tagderm holding the needles in place. I would love any advice you could give me!!

Buster, I had the same problem and I was told it is very common, so no worries. The first thing they changed in my case was the length of the needle from a 9 mm to 12 mm. You want the serum to get through the layers of skin. Also, you might want to slow the infusion rate. Maybe it is too fast and causing a reaction. Are you putting cold compresses on your infusion sites afterwards? In the beginning, I would strongly recommend it. And the glue in the tapes was also addressed, and I now have two different kinds to choose from, although I don’t think it makes too much difference in my case. The needles are so fine, have you tried putting them in without numbing cream? Maybe that is what is causing the rash? Also, you can put the needles in anywhere you have a nice fatty place, so maybe try at another spot on your body. For me, hips inner thighs work well. I am not a doctor or professional, just a patient, but I do not always put the infusions close together, rather, where I can squeeze a nice piece of…well…flab. The needles are so fine, if you are careful that the area is dry (I sterilize the infusion points first before set-up) and wipe it once with a sterile gauze before inserting the needle, it should be pain-free. Also, make sure the needles are straight, pinch a piece of skin, hold your breath and put it in. The needles today are so easy, they almost slide in on their own.
I hope this is helpful. I am with you on your journey and am wishing you all the best!

1 Like

Hi Jeezi, thank you for the advice! I switched to 9mm from 12mm 4 treatments ago. The 12mm were poking muscle tissue in certain areas. They gave me some hypoallergenic tagderm to try with the numbing cream, and I’ve got zero rashes. :blush: We shall see what happens this evening taking treatments. Thank you so much for your support! Only someone who walks the same path would truly understand! Talk with you soon! Jack

Great! Glad the problem has subsided.