Some things to try since you are having scar tissue and leaky sites are to increase the number of needles you are using to lessen the volume going into each site. Getting a longer needle length may be useful because if you aren't deep enough into your tissue with your current needles the medicine won't absorb well and you can have more scarring. Get a slower flow tubing, it could help the irritation and give your tissue more time to absorb the med during your infusion. Alternate your sites each infusion. Try not to put your needles in the exact same spot each time. You can use any place on your body that's fatty to infuse. The abdomen and thighs are the most popular spots for placing needles, but some people use their arms and love handles if there I enough fat there. Use ice and heat packs after your infusion is done. It will help your sites. The burning is more than likely the medicine leaking and irritating the needle spot, and possible too much volume in that spot that isn't absorbing. If all else were to fail and you aren't tolerating this in the future, you could attempt IVIG.

Hi Blynn,

Welcome to the group. I too, am on Hizentra and was previously on Gammagard and have been infusing for 1 1/2 yrs. When you have questions/concerns it is always good to contact the Pharmacist or Nurse at the Specialty Pharmacy, they are there to answer your questions and make sure you get the right supplies. I use Accredo and love them.

I believe the the burn look you are describing is red/swollen spot, which is a mild normal reaction, I get them sometimes and they can show up after your treatment or even a day or two later. And as far as the leaking, you probably need a longer needle than you are currently using or you may need additional injection sites added.

I am currently on 10gms and use 3 sites with a 9mm needle, but I am going to change to 12mm needle to see if the lumps go down quicker. I've been lucky and have never leaked, but i tend to leave in the needles after the infusion is complete as I forget to check the pump

It doesn't sound like you should be alarmed, but do call your Specialty Pharmacy. You can also call Hizentra.

Again, welcome!

Denise : )

HI Blynn, Welcome!
I have not had that experience. I use Gammagard and mostly it goes pretty well for me. I recently have been having some issues with toughening of the skin and made a switch to longer needles. I did not like that idea at all because it kind of made me nervous at the thought but it was really no big deal, I can tell the difference. I am talking to my Speciality Pharmacy tomorrow to review how things are going since I just had a little adjustment so they scheduled a follow up with me to make sure things are good. I am going to request adding another needle to my set as well because I am at the max right now for allowable quantity going in per site. Adding the extra needle will take some pressure off the sites so I am hoping to avoid leaking and irritation issues.

Glad you reached out. Hope to get to know you more on here.
Hugs - Zen

Thanks for your help and suggestions. I do get the red swollen spots but this is something totally different where I actually have sores and my husband describes them as looking like cigarette burns. I will ask for the bigger needles for next time as they have only been sending 4 mm which is quite a bit smaller than you are all suggesting. I am infusing 14 grams and using 4 sites. Does that sound about right? My doctor is talking about having me go to every other week and changing my dosage to 24 grams, twice a month. I am not sure if my skin can handle that. I am really nervous. Thank you all for your words of wisdom!! This is all still so new to me and just a lot of information to digest!!

Hi Blynn,

4mm needles sounds really small. I went form 9mm to 12mm.

And it does not sound right to go to every other week. Usually its the other way around, going twice a week and some people even infuse small amounts daily. My doctor had talked about splitting my dose to twice a week to help keep my energy balanced.

We are all different and you might have a bit of a trial and error stage to find the right balance for you, combination of dose, flow rate, needle size and frequency. Even right brand. Once you find it, it should not have to be something to dread. I don't love it but love the benefits and it really doesn't make me uncomfortable. Hang in there. Look for answers. And ask your doctor to help you find what is right for you. Hugs - Zen

Blynn,

You do not need to wait for your next shipment for longer needles. I would call them and have them send out longer needles before your next transfusion. If you are leaking, it means you are not getting the full dosage, every drops counts.

From my understanding, 4mm is usually for children, that is probably why your sites are leaking. And 4 injection sites for 12grms sounds correct since Hizentra is concentrated.

I agree with Zen regarding time and dosage, it is usually every week or 2xs a week.

And Glider added some great suggestions.

Call your pharmacy before the weekend and talk to them about your concerns and increased needle length. As Zen mentioned, we both started with 9mm, she just went up and I will be requesting a length increase as well as it tends to take more than 7 days for the lumps to dissolve.

Again, welcome and please ask questions, we are here to help.

Denise

Blynn5 -

Have you had any more luck ?
Another trick is - don't prime the tubing so that IG is leaking out of the needle - that will definitely irritate the skin - only prime to withing a `1/4 inch of the needle so that the IG will deposit under the skin and not in it....

I would switch brands. There are 2 other subq products you can try - Gammagard or Gamunex C. I'm a little partial to Gammagard :) If you are developing sores, that is totally NOT normal. The burning sensation can be quite normal, usually starting upon inserting the needle or starting the pump. It usually happens when we prime the tubes too far down and IG leaks out onto the needle. This can happen with any brand. Again, sores that look like burn marks are not normal. Now Hizentra does have an additive called Proline (I think) that some people are quite sensitive too. Its either an additive or a stabilizer I can't remember which. Again a brand change can help with that. Good luck!