SubQ infusions - bloating/discomfort normal?

[hlh]

My father is 72 with specific antibody deficiency. Fortunately, since starting on IG he has broken a cycle of 7 UTIs in a row. But he is currently not happy with a side effect of his current SubQ medication Hyqvia. This is the new SubQ medicine that you only have to take once every 4 months. When you start it, you actually ramp up to your full dose slowly. So the first week you take 1/4 of your normal goal dose (10g for him). Then one week later you do 20g. Then you wait 2 weeks and go up to 30g. Then you wait 3 weeks and go up to your final goal dose (40g) and repeat it every month.

After the second dose (20g = 200ml) of Hyqvia (2 needles used) my Dad complained of feeling distended/bloated and uncomfortable. He was uncomfortable for the rest of the night, but fine by the next day. I called Baxter for advice (they make Hyqvia) and they recommended changing to a bigger needle (12mm) that goes deeper to try to distribute the medicine better. The nurse came today (another new one... different nurse every time so far) and she was happy to try the bigger needle but didn't want to slow down the infusion rate, even though I suggested it. But again, by the end of my Dad's 30g infusion he suddenly said... "I don't feel good..." and again felt distended and uncomfortable. The nurse totally dismissed it... "That's normal!! That's the medicine!!.... blah...blah...blah..." By the time she left 10 minutes later, my Dad was so uncomfortable he started saying he didn't want to take the medicine anymore.... and thought he should switch to the weekly SubQ instead, if it is a smaller volume.

So I am wondering.... for any of you that have used Hyqvia.... or any of you on other SubQ preparations.... do you feel this distension/discomfort/?pain the night after infusion? Should I demand that they slow down the infusion a lot more next time (she refused to this time.....) to see if this helps?

My father is not a complainer, and has a very high pain tolerance. So I know we need to fix this. Unfortunately, the infusion nurses are not a great resource, I am learning.

[mothergoose]

I use Hizentra SQ weekly, I get swellings where I infuse it. I uses ally do my treatment just before bed, for 2 reasons, first it makes me tried, second the swellings are gone in the am.
The nurse may not the the authority to change how it has been prescribed, you my have to talk to the Dr for this.
I use Hizentra SQ weekly because when I was on IVIG I got really sick for 4-5 days after each treatment. I tried changing flow rate, different meds etc nothing worked, so for me getting a lower dose weekly is better, it doesn't make me sick only tired.
It is a bit of a pain to have to do it weekly, but I will take this approach any day over the IVIG monthly.
I have no expirence with the medication you dad is on though.
Maybe you just need to let the Dr. Know what is going on, maybe this is not the right med for your dad or he can change the rate the dose is being increased.

[mothergoose]

I assume that when your dad went on Hyqvia you read the inserts etc. I
I just googled it and Baxter has a website with lots of information about this specific medication, it has nurses you can ask ? Too. I would give this site a read you may find the info you are looking for there, or at least what is a normal reaction and not.
www.hyqvia.com/index.html#whatisHYQVIA
Hope this helps you.

[hlh]

I appreciate your posts mothergoose. Thanks - it is helpful to hear your experience.

We've been reading the inserts. And the Baxter nurses have been really helpful. The local nurses doing the infusions just don't know enough about Hyqvia yet. Unfortunately his doctor is oblivious to how the infusions are done and is totally hands off. He defers to the nurses.

But the Baxter nurse has given us instructions for how to change the next infusion (slower titration, then a slower final rate). They are also going to do some additional education for the nurses in the field. I also let the pharmacist know of his side effects, and she agreed that the rate needed to be slowed down and said she would instruct the nurses.

Fortunately, the Baxter nurse said that others have reported these side effects, even though they aren't explicitly outlined in the insert, and that they can improve with later infusions and with decreasing the rate.

[hlh]

So I see others have looked at this thread, but no one has posted. Does that mean that no one has the side effects my Dad has from their SCIG? No one else has pressure/bloating that is so bad they feel really uncomfortable? Maybe that is because the volumes from the weekly treatments are smaller...

I realized I should add this.... My Dad's final dose will be 40g. That is 400ml. Since you can only use 2 needles with Hyqvia, that means 200ml are infused at each needle site.

My Dad is tired afterwards too, but that seems to be mostly from the benadryl ... which makes him start to fall asleep even before they start the SCIG!

[john]

I have more than twice the quantity your father has....90g via 4 sites, each week.
I have never experienced bloating....localised swelling yes, but that is soon absorbed, and although I usually feel weary after an infusion, nothing so bad as to stop me having a normal day once I've cleared up!
Like mothergoose I use Hizentra...maybe your father should change products?
Hope things are going better for him since you first wrote!
John

[glowing]

During treatment it is difficult to move, so its really important to make sure we're sitting comfortably and not slouching. Could it be that your dad isn't sitting quite as comfortably and relaxed as he should before he starts? Our normal tummy gurgles have to have sufficient room to move whilst we are very still. Just a thought.
Glo

[hlh]

Thanks for the additional input. Really appreciate it.

Fortunately, things improved with my father's last infusion. It was his first full dose infusion of 40g (400ml) split between 2 needles.
Finally, the nurses slowed down the infusion, but only after we complained to my Dad's doctor and he prescribed it. Once it was slowed down, he did much better, with minimal side effects. All other variables were the same - he is very relaxed, lying down in his recliner during the infusion. John, since yours is split among 4 needles (and I'm assuming it is 900ml so about 225ml per needle?), it is similar to my father's which is split among two needles (200 per needle + the hyluronidase + saline flush) in terms of the volume of medicine per site, I think.

What I have learned is that unfortunately the infusion nurses are not yet familiar with infusing Hyqvia and often make small mistakes that they assume are insignificant, since Hyqvia is not the same as the other SCIG products. Also, Hyqvia has a range of recommended infusion rates for each step - the hyluronidase infusion step (1-2ml/min) and the Immunoglobulin step which is a "ladder" of increasingly faster rates (5-15 minutes at each rate, stepping up slowly from a slow rate to the final 4th fastest rate). What we found is that the nurses we favoring the smallest possible infusion time for each step, as they were trying to complete the infusion as quickly as possible. That is wrong. The goal is to have the patient tolerate the treatment as well as possible - especially in the beginning. And it appears that one of the most important variables in causing/minimizing side effects is the infusion rate. You should write down exactly what the nurse does each infusion. Ask what rate they have you on, how many minutes at that rate, and ask them what they are doing with each change/increase. For my Dad, he needs the infusion at each rate to be at the longest time interval (eg. 15-20 minutes) and he cannot tolerate going to the typical, fastest rate.

I strongly encourage anyone starting with Hyqvia to call Baxter and ask them to mail your their educational materials so you can understand very well how it should be infused. Also, they have a nurse you can call with questions. This nurse helped us so much, and told us what to tell the doctors and nurses. Honestly, the doctors often do not know the details about how these infusions are done, so my Dad's doctor wasn't that helpful. He told us the entire process should only take 1 hour. But it actually takes almost 3 hours, to be done in a tolerable way for my Dad.

Other mistakes the nurses made.... They said we could use 4 needles when you absolutely can only use 2. They infused at two sites below the belly button, but you are only supposed to infuse Hyqvia above the belly button in the abdomen. They skipped some of the slower rates of infusion during the Immunoglobulin ladder stage. Only when I held the instructions (written on the medicine!!) in front of her face, did the nurse finally admit I was correct and slowed down the infusion. The pump for Hyqvia is also different from the pump used for other Immunoglobulins. One time (my Dad has had a different nurse every time!!), the nurse didn't recognize the pump at all and "accidentally" started the infusion at the full rate of 240cc/hr instead of the prescribed starting rate of 10cc/hr. We had no idea. Fortunately she figured it out several minutes later when she realized the pump "sounded" like it was going too fast. Ugh. It was clear she wasn't comfortable with the pump.

If possible, ask the Provider company if you can have the same nurse each time. We had to struggle with trying to re-educate the nurses every infusion, and they never "believed" us. I finally called the company to complain. Baxter said they would reach out and try to re-educate the nurses, and try to send the same nurse whenever possible.

It is very discouraging how many mistakes were made. We live near a major American city, using the most well known Home Infusion company for delivering the medication and sending nurses. If this is the quality of our infusions, I can imagine how many others will have problems if they live in less accessible areas.

So finally.... be your own advocate, and educate yourself. Call the nurse at Baxter if you have any questions at [phone]. Ask Baxter to send you a Hyqvia Log book to keep track of your infusions parameters and side effects. Ultimately, if you are able, doing the infusions yourself is likely the best way you are sure things are being done properly. You can learn to be your own, best nurse.

[john]

Hyqvia is very new here in the UK, and I am persuaded by my specialist nurse that its only benefit is the longer period between infusions. A sample of three fellow patients using it told me that it took some getting used to comfort-wise., Basically the hyluronic acid makes a pocket in the fat layer and then something very akin to IVIG is pumped into this pocket. The pocket then closes until the next acid injection. It all sounds quite strange to me...after 20 years of IV and 2 years of SC, I think I'm staying with the SC. However, chacun a son gout...to each his own, and although I will probably not be a user, as patient rep at my clinic I will keep the forum up to date with anything new I hear about!