I have done both and can share my personal experience. They BOTH have their pro's and con's honestly. I'll share my IVIG experience first:

Pros:
Loved that I only had to think about being sick once a month.
Lots of brand choices.
Can be done in your home by an infusion nurse.

Cons:
Many places are unfamiliar with this and infuse way to quickly causing LOTS of reactions (this can easily be mitigated).

My down time was 3 days total - Infuse all day Friday, bedridden that night and Saturday, felt human around 6pm Sunday.

My levels would never really go above 700 and in 4th week I really felt lousy (IVIG starts to slowly decreases each day until your next infusion).

Subq Pros:

Done at your own convenience in your own home.
Stay mobile - I have shopped, driven around town, cleaned and cooked while infusing.
Very quick - 1.5 from set up to needle removal
Typically very little reactions.
Constant steady levels.

Cons:
Seems scary sticking needles into you (its really not, they are super tiny).
Site reactions
Can be a pain if your very active to STOP everything to infuse
Reminded you are ill every week

Its really a personal choice. Depending on how low your IGG is, your doc may want to start you off on IVIG to give you that large loading dose. It's become very popular to start people on subq, but this is typically with people who have higher IGG levels.

My best advice is to become knowledgeable about your illness, become your own best advocate, ask a lot of questions, understand the expected outcome is not a cure - but is intended to reduce the frequency and severity of your infections, and it takes awhile - 6 months to a year to feel the full effects. Also, it could take a little tweaking with brand, speed, etc, but it will work out!

Lastly (sorry this got soooo wordy lol) - once you decide on a brand, you can reach out to the manufacturer and sign up for their patient assistance program. They have tons of useful info and can even help with infusions should you ever lose your insurance. Good luck!!! :)

I can only express my use of IVIG. I have been on it for 5 years now. I am now self sufficient, I access my own central line, infuse IVIG very slow. I have no side effects except feeling a little fluish the first 24 hours. I also receive other IV treatments, so for me the central line is my only option to receive everything I need. I have had the same central line for 5 years with no problems, no infections. For me, the IVIG has been an answered prayer. I have not had any infections, no pneumonia, bronchitis for the past year. I wish you well in your journey. We all have to make decisions based upon our own individual needs. Let us know if you have any questions.

Thank you both for your input. I am making a list of questions for my doctor as I write this. It is so great to hear from people who have been through and are going through the same thing! So glad I found this site!

I can only speak to the SubQ...I've VERY happy with it. And my reasons for choosing SubQ were as follows:
I didn't want to feel so lousy for three days a month, was worried about side effects, and the idea of hanging out in a hospital (my ins. required this, some do, some don't) for 6-8 hours a month didn't appeal to me at all. I also suffered from huge fatigue. I understood that there were these lulls in IV where you'd feel awesome for the first two weeks and then decline in energy until your next treatment. I didn't want that. I like to know what to expect--I wanted to know what my energy level was going to be pretty constantly (if that makes sense).

After I started SubQ (I was prescribed Hizentra for reference, your doctor will prescribe what he feels is best for you (after you start, like Kelli has said before, it may take some tweaking and in some cases a brand change--it all depends on your body, there's no one size fits all IgG product). I was trained by a nurse three weeks in a row, and then went on my own. I used Benedryl for the first sevearl months at treatment time, which made me VERY sleepy (so no shopping or driving for me then). And then about 25 weeks in I didn't have to use Benedryl anymore, but still felt sluggish after treatment and about half the the next day. Now I'm a year in, I don't feel sluggish at all afterwards and have little to no issues the next day. BUT it took a year.

Something I wasn't told is that my body would adjust. And has. I am very happy with my treatment. My energy level isn't like a normal persons...but I'm 80% better than I was when I started-which feels freeing and amazing.

Hope that's helpful!

Thanks for the responses. I now have a great list of questions for my doctor. You all have given me a lot to consider.

I was told by my first doc and think I have seen it mentioned here that some people on IVIG have a drop off toward the end of the month cycle and are more prone to sickness at the time. Subq is supposed to keep the levels more evened out.

Thanks again for all the thoughts. My husband and I had all the questions ready for the doctor today. At the end we all decided on sub Q. Now all we need is the insurance company to agree to treatment.

Insurance approval came through! Now we need to set up a home health visit to learn how to infuse. I was so surprised it only took 2 days for the approval. It may have taken 2 years and 3 doctors but I finally found the right doctor!

Awesome! The infusing takes some getting used to, but it will be routine before you know it.

And it sure is about finding the right doctor. That's definitely how it worked for me. Years of infections, pills, allergy shots, and even nasal surgery. I went to another doc for further allergy testing and she was the one to put the pieces together and said, "Let's test your immune system..."

Yay! So glad it went so smoothly for you! I loved my training nurse--hope you have a great experience with that, too!

Thank you, TealOrca. I just got off the phone (just happen to be home sick again) with the pharmacy. Hirentza should be here tomorrow. Hopefully the nurse can come on Friday. I have been told to premedicate benedryl and Tylenol. How far ahead and any other things I should know to expect?

Everyone has slightly different experiences. I will preface my story with I now have very little reaction (fatigue the next day for about two hours) from Hizentra-but that took a year.

When you get your box of supplies and meds...there's no way to put it other than it's overwhelming. Right away, find a place to store them so you can kind of claim it. This is part of you now, so claim it. I went and got a cool soft sided storage case from The Container Store because I didn't want it to look all medically. I even considered getting a storage ottoman, but didn't find one I liked. That helped a ton. Don't panic...we've all felt it.

The procedure. Get out your stuff (the nurse will tell you what to do and how to do it).

As I started to numb my tummy with the lidocane cream (leave on for at least 30 min, and the next time a little longer if you felt the stick) I'd take the Benedryl and tylenol. I now use a green colored Sharpy to make the circles where the cream goes (because after the first time, I wiped it off and sanitized with the alcohol swab and couldn't for the life of me tell where the cream had been!). By the time you wipe it off with the alcohol swab there's just the slightest hint of a mark so you can see --and that washes off in your next shower so don't worry you'll have circles on your tummy. DO NOT USE BLACK however...lol...found out that the hard way. Doesn't got away very quickly!

While you're waiting for your tummy to numb up, prep the solution. The nurse will show you how to load the syringes (I needed two for 18g). Don't let the fluid tough the needle, stop the fluid about 1/8 inch up the line, this is called "dry prime". That little bit of air that gets pumped under your skin helps make a channel for the fluid. If the fluid DOES go into the needle, it will sting and cause (some times) irritation. Do not be afraid of bubbles or air pockets, this is SubQ and it will not hurt you.

By now--you're feeling a tiny bit sleepy from the benedryl. She's going to show you how to clean the site and insert the needles. The needle sets come with Tagaderm stips (clear dressings) as well as they'll send extra to cover up the lidocane cream (or they SHOULD) while your tummy numbs up. If you have a reaction to adhesives, you will probably react to them (I did). My nurse ordered me VersaDerm tapes and I don't have any itchiness or redness from them. Don't be afraid to ask for different supplies if you feel something's not quite right.

You set up the pump and wait. For me, the first several times took 3 hours, then after a while it took less time because my stomach tissue was used to getting the medication. I've exchanged one of the lines from a 900 to a 1200 and I'm now down to two hours of infusion time. Everyone is different. You can slow down the time by getting different gauged needles--so if you have any reaction they can slow the process down until you adjust. Again, don't be afraid to ask for that (I didn't know this!).

During infusion your nurse will take your vitals many times to make sure things are going well.

About 30 min after my nurse left from my first infusion, I got a bad case of the chills. This is a reaction. I told her about it the next time and we doubled my Benedryl. One before treatment, one right after. This pretty much put me to sleep. So for the first few weeks, I was put to bed by my family :) After about 15 weeks, we went back to one Benedryl and I was fine. Then at 25 weeks, I didn't take any Benedryl and I was fine. Our bodies do adjust--I wasn't told that, so I'm letting you know! Just takes time.

During infusions even after the benedrly was over, I was very sleepy during and after for a long time. Probably about 35 weeks. Then that stopped. (more adjusting). Then I was tired the next day, pretty much the whole day. Now I'm only tired for a couple hours.

The best advice on any of this is be patient, roll with it and drink loads of fluids. The day before the day of and the day after ESPECIALLY. IgG infusions can cause headaches. If you feel one coming on, drink MORE. And then...I've found I need to just drink more all the time anyway. At first I had to potty a LOT but again, my body adjusted. I drink about 96 ounces of water a day. My husband has bought me some pretty cool water bottles to make it more 'fun' for me, and they have measurements on the outside so I know how many times I need to refill them every day :) Contigo makes some nice bottles.

For me, this was a challenging adjustment. But, the more I accepted that this is going to be part of me, that I definitely need this to stay healthy and well (and oh boy, do I...I missed two treatments recently because of an insurance switch and got sooooo sick) I adjusted more quickly. I call them my immunobuddies. Because they are. They're my friends, and they are protecting me.

Many blessings! I hope all this helps!
April