Debating a Switch to Hyqvia- Need Advice!

[jillian93]

Hello all,

I recently went to a new immunologist and he recommended that I switch over to Hyqvia.

I currently do once weekly subQ infusions of Hizentra (10 grams) for my CVID.

The doctor said that with the switch to Hyqvia, I would only need to do infusions once a month, which would make the infusion amount 40 grams. Additionally, I would only have to use 2 needles a month, as opposed to the 12 needles I'm currently using in a month. The only real side effects seem to be some severe swelling after the infusion, mostly because the body is taking on so much liquid, but the swelling goes away within 48 hours. There's also a possibility to experience more of a "dip" with my IGG levels since I won't be doing infusions on a weekly basis. 

I'm just wondering if anyone within this community currently uses Hyqvia, or has made a switch? What do you notice about the medication? Does it work as well, if not better than others? Is the swelling in the abdomen from infusions as bad as it looks?

Any information is greatly appreciated!

Jillian 

[Andy J]

Hi Jillian

I've been on HyQvia for about six months now after 30 years of IVIG at home. Having experienced normal subQ some years earlier and hating it, I was somewhat nervous and sceptical but so far am tolerating it really well.

Four weekly infusions might be optimistic - three could be a better compromise so that you don't need to infuse so much fluid each time and also to avoid peaks / troughs in your IGG levels.

The swelling is not bad at all and certainly not painful. The first part of the infusion, the Hyaluronase, takes less than ten minutes to infuse and makes the tissues more able to absorb the subsequent IGG part of the treatment.

I alternate infusions between my abdomen and thighs and indeed the swelling is dramatically reduced overnight and then not noticeable at all after a couple of days. There is a thriving HyQvia group on Facebook if you want more information? Just search for HyQvia Warriors and come join us

Thanks and good luck!

Andy

[jillian93]

Hi Andy,

Thank you so much for the response! I already looked up Hyqvia Warriors and asked to join the group! But while I'm already talking to you, do you mind telling me how often you do your infusions and what the mL/g amount is? Also, do you notice any kind of fatigue that is more substantial than what you had with previous IVIG? I would just like to gain as much perspective as possible before making a medication switch. Thanks in advance for any information!

Jillian

[seanpr11]

Hi guys,
my doctor was considering switching me to Hyqvia. I have been getting gammagard for 3 years, today I switched to gammunex-c due to my insurance refusing to authorize gammagard anymore. My doc added more steroids to reduce chance for a reaction, and it worked, but My side effects tonight are similar but more intense.

Anyway, she was contemplating switching me to HyQvia. She is very cautious (I am lucky), and she is reluctant to switch to something that may not work as well. I get a 25G infusion 2 times a month to reduce peeks/troughs. How often do you take the HyQvia? My doctor said it is very painful, is that accurate? Do you get side effects similar to infusions?

I will check out the Facebook group.

Thanks.

[Andy J]

Hi Jillian

Sorry for the slow response.

I'm not the best person to ask regarding dosage and frequency as I have been leaking IGG like crazy for the past two years. This was the main driver behind my switch to HyQvia because my veins could no longer take being used every week and it was becoming harder each time for me to find a vein (I'd been self-infusing IVIG at home for the past 30 years or so).

To your other questions; no fatigue or other side effects whatsoever for me although some patients do prefer to premedicate just in case.

Sean we have HyQvia members in the FB group who are infusing similar amounts every 3-4 weeks and their levels are holding up well. I also never had side effects with infusions so hard to answer but for sure you'll get lots of feedback in the group (over 100 members and growing).

Thanks guys - ping me in the group when you get the chance.

Andy

[liverbird]

do you have any issues with Hizentra? Or are you just switching because HyQvia seems more convenient?

[dj]

I just had my first infusion of Hyqvia on Thursday. There was swelling, which was uncomfortable for a few hours, but overnight became bearable. No pain, just an uncomfortable feeling from the swelling. It is now Saturday and my abdomen is still red and a bit more uncomfortable today, but tolerable. I'm hoping this is as much as I experience throughout the entire process.