Hi I'm misty and I'm new too. I use subq Hyquvia and have zero side effects so far. I hydrate like crazy because that's what others have said on here. I drink as much as I can the day before, of and after. I think that may help with headaches also many people pre-med on here like with Benedryl and Tylenol before each infusion. Have you tried that? Just a couple ideas:) As for the crashing I have not experienced that but have read other reports on here that have said something similar. I hope you find your answers and feel better. Could you possibly infuse every 3 weeks if you are doing 4? Maybe that would help or possibly even seeing if the doc would look into raising your dosage? Again just ideas:) best wishes!!

Hey there! Sorry to hear you are off to a rough start. I had terrible reactions when I first started infusions....there are a lot of ways to address your reactions, and fine tune the infusion to what's right for you. First off, hydration is one of the top causes of reactions. Drink plenty of water and Gatorade the day before, day of, and day after your infusion. Avoid alcohol and caffeine. Secondly, make sure the infusion is not being run too fast. Have them deliver the medication at a very slow rate, and then as you get comfortable with the treatment you can try gradual increases to the rate to get a speed that you tolerate. Additionally, talk with your doctor about pre-medications. Most of us take Tylenol and Benedryl before treatment to help prevent side effects. I personally take both of those, a steroid, an anti inflammatory drug before and after, fluids before and after, and have pain and migraine medications that I can take the days following treatment if I need to. All of our infusion regimens look different as no two people are the same. If making any of these basic changes does not improve your symptoms, you may want to talk to your doctor about switching brands of IG. Every IG product is plasma based, but the different brands have different levels of various "additives" mixed in. I went through 4 brands of IG before finding the one that works well for me. My body was reacting to the added sugars and IgA and getting on a brand that had virtually none of those added alleviated a lot of my symptoms. Fatigue, headache, and flu like symptoms the day of, and few days after your infusion are common and acceptable symptoms.

Now as far as your decreased energy the week before treatment, that is a common problem when receiving treatment via the IV route. When you first get your infusion, your IG levels skyrocket, and then gradually decrease. So your IG levels are the lowest at the time your next infusion is due. The goal of the therapy is that you receive a dose that both allows you to maintain what would be considered a "normal" IGG level until your next infusion when your levels are at the lowest, and where you are maintaining a good energy level and quality of life without increased instance of infection. If your treatment is not meeting both of these goals they can either increase your IVIG dose, or give your infusions more frequently. With that being said, it takes 6 months to a year on treatment for you to maintain an adequate IGG level and to feel at your best. It is common practice to wait at least 6 months to make any dosing changes once you start IG therapy; and to wait 6 months after any change to dosing to make any additional changes. This allows time to establish a baseline and assess if your treatment is adequate. Hope this helps, and made sense. Welcome to the group! Feel free to jump on if you have more questions. We have a number of amazing people on here that have been doing this for a while and have lots of tips and tricks!

Hello! Thanks for getting back to me. I did try sub q infusions and that was when I got aseptic meningitis extremely bad. The Gammaplex IVIG brand has been much better since it is only a 5% solution. I am very good about hydration before and after. My doc has me start drinking Pedialyte 3 days before, and gives IV fluids before as well. I can't premeditate with Tylenol because I am allergic to it. Right now they give me ibuprofen and Claritin. I get IV Benadryl if needed, but every time they have to give it my vain blows. I am currently infusing at an extremely slow rate. With what my body tolerates my infusions take a minimum of 8 hours.

We are switching to doing them every other week instead of monthly. I will do smaller doses that way it doesn't take so long. I have been having issues with school and work around the infusions. I will also now be doing them with home health. The only concern around this is I may have not option other than to get a port. I only have one arm that a line is even able to be started in and the one vain that is good is starting to blow. It is common for me to go through 3 or 4 IVs during an infusion.

They did a 3 month IgG lab check before my infusion a couple of months ago. It came back showing my levels at the very low end of normal. I know my doctor said her goal is to get my levels a tad higher. My infections for the most part have been better controlled, but I did just have a really severe one that wasn't responding to my normal 14 day high dose levaquin, but things did start to turn around and after my last infusion I started to get better.

I really do appreciate you guys getting back to me :)

Ugh that sounds terrible Lwiz:( a port may be a good idea for you. That sounds pretty painful. I know you had a bad reaction to subq in past but there are a few different brand options. Maybe if one doesn't work another one would. Not sure but 3-4 IV's per infusion sounds horrible. I'm new to this and doing subq Hyquvia at home but that's a large amount at once too. There is a light at the end of the tunnel I believe:)!!! We just have to find it!! Sending you well wishes for good health and happiness. Misty

My bi-weekly infusions seem to be working for my body MUCH better--minus the whole IV issue. Sub Q isn't an option for me to try again. It is too concentrated for my body to handle. The new Gammaplex brand which is a 5% solution is working really well with me when infused with fluids before and simultaneously with Dextrose.

I'm not crashing as bad anymore, but I do still notice a huge energy difference when it's time for my next one, but with infusions being at home the home nurse & I have our schedule down. In fusion is every other week on Thursday at the exact same time.

Hi LWiz
So sorry you are having a horrible reaction & crashing so hard.

Gliderlove is spot on with her description and what you need to do. Hope they can figure out the right rate to run your dose & how often you need it. Keep on your doctor it takes some time to get things figured out.

If you "crash" just before your next infusion there are two obvious solutions. First, if you are on a four week cycle you could change to a three week cycle. The other remedy is to increase your dose of IG so that you don't "run out" at the end of the cycle

Hi LWiz: I too, have CVIDS. Have had for about 16 years, Honestly what your experiencing the "crash" right before your next infusion, is perfectly NORMAL, it will take you about 6 months to a year to really start feeling well once they get your medication and dose perfect, I go for infusions once every 3 weeks, I could prolong it it every 4 weeks, but the fatigue is not worth it. But long story short, yes, it is the way with CVID's to feel chronic fatigue, that's why most people do the subQ they can control their own levels.