I mean clips that show what a SubQ injection set up looks like

First off I totally understand your anxiety and fears with this. My very IVIG put me in the hospital and almost caused a stroke. I worked with my immunologist and we waited several months before trying subq. My pharmacy sent me a great dvd that walked through every step. I watched it before my nurse came. Have you received anything yet from the pharmacy?

Ever since my first IVIG and meningitis I have suffered from migraines. I stay really well hydrated, i take Tylenol and some migraine medication. I haven't had the bad migraines with subq that I did with IVIG.

I think anxiety is normal and it is okay to have it. I would say a majority of us strongly dislike going to doctors or the hospital because of bad experiences. Make sure you build yourself a good support system who can help you with this. My mom learned how to do subq with my (i'm 23) and it helped knowing she knows how to do it too.

Best of luck :) you've got this!

Because I take Hizentra, I'm familiar with them--not so much any other subq. They do have a video http://www.hizentra.com/consumer/about-hizentra/sub-q-self-administration-video.aspx that was helpful. Also, you should make sure to ask your training nurse all kinds of questions and make sure you're comfortable.

Tips I wish I'd had the first few times:
prior to putting on the numbing cream (lidocane cream) circle your tummy sites (I have four) in a light colored sharpy. I use green. By the time you wipe off the cream and then clean with the alchohol swab, it's almost gone, but still there enough to make sure you hit the numbed spot with the needle. By the time you have your bath the next night, it's all gone.

Drink lots of fluids ALL THE TIME. Even though I was well hydrated the day before, the day of and the day after, I still got the occasional headache and slight nausea. I drink about 96 ounces of water a day now, avoid caffeine the day of treatment (as that dehydrates folks) and I do really well. Haven't had a headache in ages, except for when I forget to drink enough.

And I used to have to take benedryl every time, and now I don't because my body adjusted. They didn't tell me that would happen, so I tell new folks that your body does adjust to treatment, eventually the fluid will go in slightly faster as your tissues get used to the weekly treatment, and the side effects go down. I used to be rather hung over every day after treatment, and now I'm just a bit fatigued in the morning and otherwise okay.

I've done SubQ 62 times :)

Blessings!

Oh...and do you think they'd come to your home rather than you going to the hospital? Or was your reaction such that they want to moniter you? it can still make you drousy until you're used to it, so make sure you have a ride home.

Anxiety is completely understandable. Be easy on yourself. HUGS>

Sorry about all the replies! I just re-watched the video and forgot that video talks about transferring the Hizentra via needles. Most places send mini spike that go right into the bottles and twist onto the syringe and makes is sooo much easier.

OH, and make sure they dry prime the lines (leave a bit of space at the beginning of the needle it makes a pocket of air that aids the fluid going in smother). AND if you are itchy, it might be the adhesive from the tapes--ask for Versaderm strips-they are easier on the skin.

Agree with Teal about watching the Hizentra video. Do you know what brand they are starting you on? Gammagard also has a video and I had found a really good one on YouTube too.

Because you suffer from migraines I would request they give you the slowest flow rate tubing possible. Agree to also hydrate really well. The sticks are relatively painless (I don't use numbing cream because I ALWAYS forget) and its virtually impossible to injure yourself (this was one of my biggest fears). I was really nervous and felt like they were crazy for letting non-nursing individuals do this themselves. Now? I shop with them, cook, do laundry, I have even had to do them at work lol

I was getting very sleepy after I infused, so now I do them about 8 o'clock at night when I know I'm going to bed and I don't waste the remainder of my day sleeping after the infusion. I did get minor site reaction and a small headache after my first few infusions, and since I have been pre medicating with a Benadryl and Tylenol 15 minutes before I start, I have done fine. The only issue I have now is a lumpy and somewhat sore belly by the end. I am super skinny so have trouble choosing sites because there is not much fat to stick, so that was my biggest obstacle!! I love SubQ though! My veins collapse almost every time I have IVs placed or blood drawn, so I am so grateful we have this option! And ditto to the other advice already posted:)

Thanks so much! This means so much to me.

I am in my twenties as well, and I think you and I, Sorcha19, had similar reactions to IVIG. ROUGH TIMES! I am glad you seemed to have pulled through so well, that is, I hope you have :)

I guess the key is to figure out how to read your own body and figure out what works for you and the timing of it.

No, I wasn't aware the pharmacy had videos available. I will look on youtube and watch the one attached. Thanks everyone.

I don't know what they are starting me on. I have read on here about certain mixtures containing more IgA and certain people being anti-IgA because their levels are so low. Has anyone had this happen to them?

What are the main differences between Hizentra and Gammaguard for those of you who have tried both. Are there huge ones or are they very similar?

Thanks!

Plus hydration of course! Gatorade and water, no caffeine. I think I will start tomorrow. Thanks!

Some people have low IGA and may be sensitive to higher IGA products. Others have anti-iga antibodies which is a whole other ball game. I do not produce anti-iga antibodies but had all the symptoms of aseptic meningitis with IVIG. Your doctor can order a blood test to check for the anti-iga antibodies. Here is a link to the list of products available on the market and whats in them (iga content, sugar, preservatives, etc):

http://primaryimmune.org/treatment-information/immunoglobulin-products

Different brands are VERY individual. I may do awesome on mine and you may not.

I absolutely have done SO much better with subq! my infections are down and i haven't had that horrible reaction that i did with IVIG. i swear they tell you that the meningitis goes away after a few weeks, but it has some long lasting affects! i use hyzentra and i had a home health nurse that came to my house. i don't know if it was because my parents have awesome insurance or what. Definitely look up that link that kelli posted because she is really knows so much! i also made a list of questions i had for my nurse when she came to ask her and she was really helpful

I got through it and it was in great parts to you all. Thank you, thank you, thank you! I was exhausted last night but seemed to be ok this morning.
All the best xo