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It's a hard knot life: How I head off "knots" from my Hizentra infusions

It's a hard knot life: How I head off "knots" from my Hizentra infusions

Each week I look like Sigourney Weaver in Aliens. 

My husband gives me a subcutaneous infusion called Hizentra which is a very expensive medicine, somewhere between $5000-$8000 a pop and I receive this once a week, at home, in the evenings, usually on Mondays and I do this for very specific reasons. People have different experiences, and I found this link to be helpful.

Below is specific to me and everyone's reactions and ideas are unique to their own body.

I use ice to keep swelling down, some use heat to help the rate of the flow. I'll talk about about flow rate at another point.

  • This powerful medication often makes me feel tired alongside the Benadryl, I take in order to keep the side effects down.
  • I get quite large balls that pop up on my tummy during my infusion. They're often referred to as knots because they are hard.and painful.  I use ibuprofen to help the pain. I also put a huge ice pack on my tunny while I receive the infusion and then after while I go to sleep, AND the next morning. 
  • I typically dance or exercise the next day, but I wait until Tuesday evenings so I've had a little under 24 hours to recover. I wear tight pants that (and sometime a waist trainer type thing to keep my stomach in place) because it hurts when I jump, or do that kick-ass hip hop class.
  • On day three it starts to go down and I no longer look puffy, more like two months pregnant, but sometimes still sensitive. 
  • Repeat the next Monday (or Saturday or Sunday if I'm starting to get sick and we feel I need it).
  • One thing I forgot to mention. It greatly benefits me to hydrate the day before the infusion, the day of the infusion and the day after the infusion, which for me is a pain in the ass. I have a small bladder as it is, but I do feel oh so much better. I pee all day long. As a result, sometimes I don't do such a great job. However, I can really screw myself in dance class the next night and start sweating profusely as a result of not enough hydration. So, heed my warning. I usually drink a little lemonade with mostly water. I also use a electrolyte replacement drink that my husband picked up for me. I use Ultima grape flavor because it reminds me of otter pops.

I didn't really know what to expect so I thought it might be a good idea to show what happens for those who may be about to start this type of treatment.

Side effects will vary from person to person and also because the medicine you receive is from human plasma and is therefore variable.  

My main side effects are knots, tiredness, sluggishness, and my tummy hurts for about a day a half. I can take the infusion in other areas, I just haven't tried it yet, but will do so soon because using the same area each week can cause scar tissue. Other people have other types of side effects and some can be severe and indicate you should call your doctor so check that out here.

There are a few other options here and I've listed them for your reference. There is another recently released med by a company called Shire called Cuvitru. (Where do they come up with these names?) Here are the rest of them and a quick overview (however probably best to take a look here.)

  • Gammagard Liquid-immune globulin infusion 10% solution – Baxter Healthcare Corporation
  • Gammaked™ Immune globulin injection 10% caprylate/chromatography purified – Kedrion Biopharma, Inc.
  • Gamunex® -C (immune globulin injection 10% caprylate/chromatography purified – Grifols Therapeutics, Inc
  • Hizentra® immune globulin subcutaneous 20% liquid  CSL Behring
  • HyQvia immune globulin infusion 10% with recombinant human hyaluronidase – Baxter Healthcare Corporation

Do I like subcutaneous therapy better than Intravenous? I guess so. I used to have to think about all this once a month. But it was a trip to the hospital, a four hour infusion, one time the nurse accidentally didn't connect my IV to the drip and it was spilling out for 45 minutes with no one noticing, so that's $3000 down the drain...just a mistake, no ones fault, and it's a little depressing. I looked like frickin' Elle Woods with in the infusion clinic because I refused to not get work done. (Bipolar anyone?) The SubQ allows me to be home, with my kids and husband and comfy and I can go straight to bed if I feel like I need to. However, it's weekly. Not only is it weekly but I think about it several days. The courier drops it on Thursdays (because it's so expensive, luckily we both work from home), I hydrate Sundays, infusion is Monday, I hydrate Tuesday and get knotted up and then hope I can make it to my dance class Tuesday night. In other words, it's a lot of mental energy each week. 

It keeps me alive and kicking so I'm not here to complain. I do think a lot about those who can't afford what we can. In fact, I just read something about medicare. Will I need to worry about when I turn 65 getting this covered in retirement? That's more than 20 years from now, still something to think about. At the very least something to write about, huh?

Did you know there is a monthly free magazine for people with chronic immune deficiency?  I highly recommend it. You can sign up for it here.

Merry Christmas Eve...tired and ready for a new year...

Merry Christmas Eve...tired and ready for a new year...

How I may have spent 20+ years imitating others

How I may have spent 20+ years imitating others