Martin9 did a great description. I’ve been doing my own injections every weekend for about one year. Occasionally I miss a week and double up the following week. Find the process easy to administer in about one hour. I sit and watch tv or read during the injection. The sites are swelled for a couple hours afterwards. I put bandaids over each injection site and remove them a few hours later. As long as you are comfortable with handling and inserting needles the process is fairly easy to self administer. I’ve never used the option of going to Hopkins to have this done. Be well and good luck.
Isabelle, I find the Hizentra regimen I am on to be pretty easy to follow and schedule. Hizentra is 4 doses per month of Ig injected one per week (I try to stay on the same day per week and try to avoid the day I get chemo). The infusion for me is through two needles (typically one on each side of my stomach with tubes leading to a wind-up infusion device designed to deliver a smooth flow of equal amounts through each needle). The needles are not too painful and are only painful during the initial placement. There is some swelling at the injection sites due to the fluid being just under the skin but that does not last long. I have not had any particular side-effects (redness at injection sites, and that's about it). While there is training on how to administer Hizentra yourself and I have done it alone, I have been lucky enough to have my son and daughter usually help me. I think it helps them feel like they are helping with my MM. As for tips, try to stay on the same schedule, watch your supplies and make sure they are delivered on time (like during our recent snow), if you experience any problems call the numbers they will give you for assistance. The alternative for me is going to Johns Hopkins for a 2-3 hour infusion once a month. I have noticed my immunoglobulin numbers improving and I think it is better to spread out the dosing rather than to have my immunoglobulin go up and down between infusions. I recommend Hizentra especially if you have a helpful caregiver. Some users work while receiving the infusions (I do not) but you can certainly read, watch TV or whatever. I hope this helps. Best wishes!!
@A MyMyelomaTeam Member
I'm very pleased you received such great responses from Martin9 and ChuckMartin.
Unfortunately, my doctor never heard of Hizentra and is not willing to learn about it.
I did ask him if I could have home treatments with the same medicine I receive from the 5-hour infusions in his office. He said yes.
The medicine is Gammaguard. I'm okay with it. My main interest in Hizentra was because you can do it yourself at home, but I've since learned I can have the Gammaguard at home as well.
The only downside is Gammaguard requires pre-meds, Dexamethasone and Benadryl. I am in remission and I want to avoid steroids.
It is my understanding that Hizentra does not require pre-meds and there are few side effects compared to Gammaguard.
Another reason I was interested in IgG home treatment was, because of something I learned from my other cancer group about the bathrooms at infusion centers.
Patients at the infusion center who are receiving certain chemotherapy drugs, when they pee and flush the toilet, toxins from the chemotherapy drugs go up into the air and are possibly breathe in by others using the same bathroom, unless the chemo patient closes the lid on the toilet prior to flushing...if there is a lid, On commercial toilets there usually isn't.
Also, in my other group some people complain they can't get insurance to cover Hizentra. Some of the members say it's because you have to have primary Immunodeficiency. Low IgG caused by Multiple myeloma medicine is considered secondary immunodeficiency.
My IgG is very low now and requires treatment. My next doctor's appointment is in 2 weeks and that is when I will find out if having my IVIG treatment
at home is actually going to happen. I sure hope so because this whole process is so involved and there's so much mystery about it.
Fortunately my infusion treatment last 5 to 7 months. I'll be glad when I'm off Revlimid and my IgG levels return back to normal so this will be one less thing I'll have to worry about.
I hope my information was helpful for you and everyone else reading this post.
Vicki7 😊
This is very helpful and I will pray you get the treatment you need. Thanks for sharing.
What are the injections for