I do subQ Hizentra 5x a week - I am in Canada and it seems many of us do it this way. Others here can help if you are doing it weekly - it's just a little more volume at one time and probably more than one injection site. I've seen a youtube video of a man doing a weekly dose with somewhere from 30-50 ml. I do 10 ml in my thigh 5x a week.

Anyway - as with IVIG drink lots of fluids, relax and set up your infusion space so you can be comfy. Pace the infusion for best results...you really do get used to it.

I am sure others could add here...

Dear One
The unknown is the hardest part, you will have it become the new normal one day. I do ivig due to no IgA.
Many here are doing subq they will all be more helpful than I. I can tell you that this summer before an international trip I stuck my own chest port. I was really scary and I did not think I could do it. My long term nurse placed her hand over mine and I did it! I was sorta freaky. Now I know I have done it so next time that freaky unknown scary abbess will no longer haunt me. You will be made able. Trust the process.

Hello Seekit,
I answered with a rather long message and it got
erased.
It basically said:
I'm new here too
I was afraid also.
I do sub q once a week and nurse came to my house.
It went well. It took about 4 times for me to learn the
whole procedure. I hired a retired nurse as backup.
Now, I do it on my own. I don't need back up.
I overcame my aversion to needles. I put ice on the
areas ahead of time.
People here are very good about answering
questions.
I hope things go well for you.
It takes some getting used to, but I'm very glad
I'm able to have and do these treatments.
I don't have family to help either. I didn't have
any side effects, but when my head hurt, I took and
extra extra strength Tylenol. good wishes to you

Wow, thank you for your replies. I'm feeling a little better. Where have most of you found is the easiest site to poke? I like the ice before hand idea. I'm not sure on the amount I will be doing. I will have to learn. I also like the idea of finding a retired nurse that could help me.

It is so nice to have this forum. Truly am thankful for your responses. If anyone has more to share I would love to know.

Hello I am on IVIG, but had trialed SubQ for a few months after my diagnosis. I think everyone is nervous about poking themselves at first! I used to put lidocaine cream on my skin where I planned to access myself, and wouldn't feel the stick:) Just ask your doctor to order lidocaine cream...never heard of one refusing. You want to inject into your fattiest areas. Abdomen is normally a favorite. Thighs and love handles work well for most too. Using ice and heat after the infusion should help any soreness, and prevent scar tissue. Best of luck. Feel free to jump on with any other questions.

Hi seekit. Welcome to our group. It is a very good thing that you found us. I know that when I was first diagnosed over 5 years ago I relied heavily on the information and support that I received here.

Don't worry about the SubQ. Once you get the hang of it you will love it. You are in your on home and can control the time of day that you infuse and just be comfy in your own surroundings. Also, you will hopefully feel the benefits of keeping your IgG numbers higher throughout the month. I was on IVIG for a couple of years and within just a few months of switching to SubQ I was doing significantly better. Hopefully, this will be the same for you.

As time goes on you will undoubtably be faced with many more questions and issues. CVID can be a pretty complicated disorder so it can get a little difficult to deal with at times, but you should be able to find a lot of information here and through other sources online. For now, try to just concentrate on getting your SubQ under control and focus on that. As any other issues arise you can take them on as they come. Sooner or later a lot of us have realized that there are quite a few doctors out there that haven't a clue about CVID and all of its complexities. Count your blessings if you have a good doctor, but don't be afraid to look for second opinions and more specialists. Hang in there and you should do just fine.

Subq is a VERY common method of infusion. It gives us an alternative choice to leaving our house and sitting in a clinic for hours on end. And for some of us, gets rid of the horrible side effects from IVIG.

The needle is itty bitty. Once I learned it is nearly impossible to hurt yourself and cause harm, the fear quickly left me. There are some really great resources out there. Try contacting the girls at the Gammagard Patient Support program and ask for the video and a subq travel kit (comes with a mat). It may help to watch the video to help mentally prepare yourself.

Most side effects include some redness, minor swelling and maybe itchiness at the infusion site. This usually resolves in 24 hours. Thats it. i don't even premedicate ;)

Hey seekit,

I started sub-q infusions December 2013. I was really nervous about my illness (like am I gonna die young because of it?) and also the thought of lifelong weekly treatments. The needle thing made me a little nervous too. But not to worry.

I had so many illnesses I would have stuck my hand in a bees nest if it would've helped. The nurse came to my home, trained me a couple of times and off I went. For me the best place for least pain is on each side of my belly button about an inch or two away.

The first few times you do it on your own you will be a little nervous, but after that you'll say "I got this!" and it'll be no biggie. As for the needle pain, it is only a second or two, the needles are tiny and you get used to it. It's really not that bad and I'm a fraidy cat.

I joined this site early this summer and have learned a lot; things like keeping track of your trough levels and what igg is.

Take care and keep us posted.

Dennis

Welcome! Pretty much what everyone has already stayed.

I too, do subq, in fact getting my infusion right now.

You'll do just fine, especially when you see that it sounds scarier than it really is...

Good luck!

Denise

Hi Seekit and welcome! I also do subq at home and I was scared at first, wondering if I would be able to stick myself and remember all the steps to the infusion. When I went in and the nurse taught me, I was pleasantly surprised at how easy and comfortable it is.

I have an infusion mat from Baxter, the makers of Gammagard, and it helps me remember what supplies I need to use and shows the different steps on the bottom. My nurse was a great teacher and it was easy to learn and remember the steps.

I use ELMA numbing cream before my infusions and it makes it much easier to stick myself. I do not feel the needles go in and since I know I won't feel it, it makes it easier for me to do psychologically.

The side effects from subq are mild compared to IVIG. I will sometimes get a headache and I dealt with nausea, but the nausea was taken care of by premedicating with 8 mg of Zofran an hour before the infusion. The most common side effects are redness and itching/burning at the site of the infusion.

If I can do it, anyone can! You'll do great.
Sending love and hugs,
Ashlee

Hi Seekit and welcome to the group.

I have been doing weekly SubQ for about 14 months. Wow! hard to believe that much time has gone by since starting. I am not a needle person and had never had to do any kind of self medical stuff before so it kind of freaked me out. I cried when I received my supplies because I felt so overwhelmed. Once I had my teaching session with the nurse, I turned down the second one because I wanted to jump in and give it a go. I did fine. Its become routine. I infuse 15g of Gammagard into 6 sites weekly. I infuse on Friday nights and relax during that time. It goes quite fast now (down to 45-50 minutes). It was important in the beginning to start out slow to help minimize reactions. I initially got a headache and lots of itching. I used to take Benadryl and Zyrtec along with Tylenol before starting and now I don't use any medications.

Good luck and let us know how it goes for you. - Zen

Hi seekit.
I've been infusing since June. The numbing cream is definitely a game changer. Just make sure to distribute the cream and wait 30 minutes. You'll know if you missed a spot.
I remember I was so overwhelmed at the beginning. What helped was making a video of the nurse as she was teaching me to prep. Just watching it once helped me remember the steps involved. Give yourself a little time and you'll become a pro.

Again you all are amazing. You are not going to believe this. But I just got a call and my insurance will not cover all of it (out of network) something to do with my diagnosis code it doesn't cover it. So, I'm heading back to the fusion center for now. Oh my! I was starting to feel better after reading all your posts. I will keep you all posted.

Just because they said no doesn't always mean they won't. Get your doctor involved. They can request a peer consult. Also when I got started, my immunologist identified the Specialty Pharmacy my insurance company preferred and submitted his orders through them. They were well equipped to get the approval. It's actually cheaper to do subq than IVIG because you don't involve hospital/nursing services beyond the startup.