So I have just had two treatments Sub-Q. I've felt weak and dizzy after.
What were your specific symptoms? I'm questioning whether to continue with treatment. Has your doctor told you about other options for treatment?

I get dizzy during the treatment. You should be drinking Smart Water the day of and day after treatment. I do it at night because I get supper sleepy. I feel wiped out the next day. Then on day 2 I feel like I have the stomach flu. It usually lessens each day. I was doing the treatment every 7 days, but then I only have 2 days of feeling better, so now I do it every 12 days. It has been 10 months since I started and it is not as severe as before.

I take Hyqvia, it's supposed to be monthly, but my counts are still low, so I do it Sub-Q at home every three weeks, and it has been good, I get some side effects three days later when it is absorbed, but nothing like the intravenous.
Good luck!

Still exhausted . . .

I have had 11 infusions for CVID in the last 2 months. After every infusion, I have several reactions/symptoms. For the first 2 days, I am exhausted and I have minor flu-like symptoms. The third day I am ok and have more energy. The fourth day I have nausea and all the blood in my face is gone - I am so pale and white. On the fifth day, I feel a bit better and Day 6 and Day 7 are finally good days. I am wondering if this is a typical pattern. Any feedback would be greatly appreciated.

Hi Susan, I was diagnosed with cvid 6 years ago and have tried everything - including home subq injections. They did not boost my igg levels. In fact, mine dropped and I was having horrible side effects - huge itchy bruises at each injection site, dizziness, flu like symptoms, nausea, hives and more. I found that IVIG at the hospital helped me. I still get some side effects but my igg levels have been around 1600 for the last few years. Gamnagard or Privigen are the two options for IVIG.

Unfortunately, there are many side effects to igg replacement therapy - whether it’s done subq or through an iv. But, I have found that I can live with the side effects more than fighting chronic bronchitis or pneumonia every month.
The day before my treatments, I drink A LOT of water. Then, I drink a lot of water the day of and for the next few days. Keeping hydrated is helpful. I can’t say smart water is any better than another brand. But, keep hydrated. On the day of my treatments, I get a bag of saline (1000ml) along with some premeds that include zodran (which is an anti nausea med), Motrin, Tylenol and benedryl and solucortef. These help me with side effects. I also have the privigen administered at a very slow rate - which also helps. I started getting treatments once a month but was still getting sick. I moved to every 3 weeks and am now at every 2 weeks.

The guidelines in the latest medical literature say that it is a bit of trial and error arriving at the correct Ig dose (whether IV or SC) after a CVID diagnosis. The gold standard is if you are still getting infections your dose needs to be increased. The "normal" range for blood IgG is about 700-1250. Generally immmunologists want to get your trough (the lowest it goes each month, which is the level right before you get your IVIG or SCIG) to be within the normal range, with most wanting it to be over 900. Some guidlines say that at a minimum your trough IgG should be at least 400 higher than your pre-treatment IgG. But in any case, if you are still getting frequent infections you need a higher dose. If your immunologist does not know this, find a new one.