So in my experience, aseptic meningitis can especially happen because of your rate of infusion. #1 culprit. We are all different and one infusion speed does NOT fit all. They would take me 6 hours. That was me literally tinkering around with dose, speed, brand, etc for 3 years before i found my magic combo (I was not a great advocate for myself). Its best to go too slow rather than too fast. Once you've gone too fast you cannot take it back. I always did fine during my infusions, it was the after that was a problem.

I now do subq, 5 needles in my abdomen every week, takes about an hour. I do not take any premeds first or after and i have ZERO reactions. The needles are tiny, like a diabetic needle. The thing to keep in mind here is people do not go online to post about how amazing they are doing, they come online and post when they are having problems. Many many many people do perfectly fine with subq. I trained in my nurses office ONCE then I was on my own. You are not accessing veins, just fat. There are instructions that come with it as well. Also, many many many people do perfectly fine with IVIG as well.

Also, if you were properly diagnosed with CVID then you are unable to make a protective amount of antibodies to common junk that can spin out of control with people like us. Repeated infections can lead to permanent lung damage as well. Without treatment the infections usually become more frequent and more severe. I've said it on this board before and I'll say it again....I would squirt it in my eye if I had to get it into me lol

Kelli, thank you so much for your reply. I decided yesterday (before reading this) to postpone SCIG for a while, though my immunologist was a little apprehensive. But after reading your comments, I think I will reconsider once January starts.

They are talking about giving me Hizentra for the SCIG, and I was alarmed to read that some people have suffered hair loss as a side effect. Have you heard of this?

Thanks also for your description of the process. When I tried watching a video online, it seemed more drastic than what you described.

Novelidea I am so sorry you had such a bad experience with your first infusion! I agree with kelli1b; everyone responds to treatment differently.

However, I wanted you to know that many of us do tolerate subcutaneous Ig very well. I have been on Hizentra for 1 year and 9 months and it has gone very well for me. It seems to me that very few people post about how well they are doing, but many people really do well. I think it takes a bit of time to get used to everything, but after one has some time to adjust and tweak things, it really does get better.
I was surprised to see your comment about the hair loss - I have never heard that and certainly haven't experienced that myself. In fact, I feel like the condition of my hair has improved if anything since I started treatment! Keep in mind that stress, illness, and any other medications a person may be on could cause hair loss - not necessarily the Hizentra itself.
I know it is a very personal decision to decide to go on treatment or not...for me, I have a medical background and decided that the risks for long term organ damage and other problems related to dysregulation of the immune system where significant enough that the benefits of the treatment outweighed the risks.
Wishing you the best!

I think this is the video I watched, Hizentra:

http://www.hizentra.com/about-scig-therapy/sub-q-self-administration-video-hcp.aspx

At about the 11 minute mark you can see him actually inserting the little needle in his skin. Of course the entire video is beneficial but if you wanted to jump to the part that is scary for most folks, go to 11 minutes.

Hey there! I had a horrific time when I first started infusions. I was hospitalized after every dang infusion for severe side effects. Don't give up after the first one!! Many things can be done. They can tinker with your infusion rate, give you IV fluids on infusion day, try various pre meds to help prevent reactions, try different brands of IG, and different routes. Hydration and infusion rate are the two biggest culprits with causing side effects. Work with those first. Drink plenty of water and Gatorade the days before, day of, and days after treatment and maybe ask about receiving additional fluid therapy if needed. And go slow with the infusion. Slow and steady wins the race. As Kelli said there is no harm in going to slow, but if you go too fast you cant take it back. As far as premedication goes it is very common for people to take a dose of Tylenol and benedryl prior to starting the infusion. Some of us use steroids such as prednisone or solumedrol, and I like you am prone to migraines and also receive toradol, and IV fluids and have migraine medication for if I need it the days after treatment. We all respond differently and have different needs. This treatment is not one size fits all. I ended up switching brands of infusion which made a major difference. It was truly night and day. Each brand of infusion has different "additives" in the IG such as IgA, sugars, etc. I am pre diabetic due to a damaged pancreas and so we put me on a brand of IG with no added sugar, and there are studies showing that individuals deficient in IgA may react adversely to added IgA in infusion products. I have deficient IgA so we put me on a brand with the lowest additive of it. It was just a shot in the dark, but it worked. I went from hospitalized every infusion to at one point self infusing IVIG at home. Sub Q may also help lessen your reactions because it is a lower dose each time and it is infused into fat as opposed to the bloodstream which can lessen reactions. Long story short, there are still options for you to respond well. I almost quit several times in the beginning and am glad I hung in there. If you go to primaryimmune.org which is the Immune Deficiency Foundations website they have a wealth of information on Immunodeficiency's and the available treatments. They have a chart on the website that compares all the infusion brands and tells you how much of each additive is in every product so you can look at that to see what you are getting; they have info on decreasing side effects, etc. All you could want to know. Check it out and best of luck to you!!

Thank you all. After reading the comments (not quite up to watching the video yet) I am considering this more of a one-month break from a lot of "challenging" things happening at once than being a final decision not to begin the subq treatments. January is a whole new year, right?

Hi NovelIdea! I'm so sorry you experienced the meningitis. I, too, had the same aseptic meningitis following my first IVIG last October and ended up hospitalized for 3 days, so I totally understand. I continued having headaches and strange feelings for several weeks and took prednisone too, so we held off on doing anything more until things settled down. I hesitantly began weekly subq treatments in early December last year with Gamunex C (same product I had in IVIG) and really have had no major problems with it. I begin with Benadryl and Tylenol just as a precautionary. I do 4 needles abdominally weekly and it's really not bad. The worst thing I think is the time getting it all laid out and ready! I've been so much better this year having been on it and only had strep throat and a sinus infection one time. I had major foot surgery in August and it's the first surgery I've had without it getting an infection! So I think it's worth the inconvenience to get the GG and I hope you will consider it. Take care and best of luck in your "journey" with CVID!

Oh yes, I forgot to say that I receive 8 grams of Gamunex C each week in subq and with 4 needles (not painful) abdominally. It takes about 1 1/2 hrs. (I was told I can also do them in my upper thighs as well.). Again, best of luck to you and may you have improved health in days to come!

You know it might help you to talk to people like us :) primaryimmune.org has peer support volunteers you could ask to speak to (I know because I am one haha). Also MyIGSource has advocates who either have primary immunodeficiency or have kids that do and they have a wealth of stuff they can send you too (they also have nurses and insurance people to help out) 855-250-5111

Thanks again, everyone! This has been such a big help, you have no idea. PuzzledOkie, yes, I am only now getting over the post-meningitis headache(s), weirdness, and extra Prednisone. I'm still on an increased dose, though tapering. The meningitis was a big deal, made more complicated because my poor husband thought I was dying in the ER and doesn't want me/us to go through that ever again.

But I am on board now, especially after reading other entries about lung damage, etc. I'm glad I took this break over the holidays, but you all have helped me feel more settled and at ease about what the future holds. Thanks.

I am scheduled for my first subcutaneous infusion 1/11/2016. My second immunologist researched it and decided that because of the meningitis complication, I would do better on Gammagard after all, 10% rather than the 20% Hizentra. thanks for the hand-holding; I needed it.

I am on subq. One of the things I would talk to my doctor about would be if you need pre-meds. The other thing, in my own personal experience, would be again to start out slowly with your infusion. You can talk to your doctor (who may refer you to the pharmacy) about the flow rate tubing. This regulates how fast the infusion will go. Most start with a rate of F275. I am on F600. The higher the number the faster your infusion will go. A nurse will guide you and if you call MyIGSource they will send you a ton of great info on subq :)

Kelli, yes, my second immunologist (the one in charge now since he is more local) said I should do Benedryl and prednisone as premeds, the day before and the day of treatment, I think he said. But I am seeing him again a week before I do the first subq, so he can remind me then. Now to stay well for the next 3 1/2 weeks. I honestly would not have been able to make this decision, or at least to feel as good about it, without everyone's help.

(I am tapering my current increased dose of prednisone, lingering post-meningitis headache, so I guess that will jangle things up again a little.)

More than a month later: *Finally,* my first subq IG infusion is set for Monday the 25th. (Switching from IVIG #1and meningitisto this.) My immunologist changed his mind about Hizentra for me and is going back to Gammagard, though weekly, and subq. The longer the delay went on, the more anxious I got about the whole thing. (Immunologist had thought I should have first 2 outpatient, rather than at home, but local branch of City of Hope didn't do the procedure, and a nurse was going to go in to train them, and, and. Endless confusion and miscommunication, especially since I didn't get side-effects *during* the procedure at all the first time around. It's after that's the problem.)

So, thanks to the advice, encouragement, and experience of people here, I am set. I'll be taking extra prednisone and benedryl the day before and the day of the infusion, and I will hydrate like mad, which none of the doctors seems to mention but you have. And they'll be taking 2 1/2 hours for the infusion. The longer the better.

Thanks again, and fingers crossed!