Hi Overstreet22,
Checking in to see how you are doing on the Cuvitru? I am currently on Hizentra & having horrible side effects. The day after my infusion I wake up 5 pounds heavier & having difficulties urinating. Then we do Lasix to get rid of the fluid then I end up with low potassium. Just a vicious circle. Hope this works out for you.

My insurance company didn't approve the Cuvitru because they have their own specialty pharmacy and Cuvitru is currently contracted with only a handful of specialty pharmacies. I haven't had a bad experience with Hizentra; I'm equally curious about the possible benefits. I assume your doctor is monitoring your kidney function. Unless you have chronic kidney disease, you may want to discuss proper hydration before and after your infusion. The high protein content of the solution can possibly be affecting your kidney function. If you don't have a fluid restriction, you may want to ensure that you're infusing in the middle of the day, when you can properly hydrate during the hours before and after. I'm sorry you're having to deal with this vicious cycle. If this is a normal occurrence, you may want to discuss diuretic/potassium supplementation with your infusions? There are diuretics that do less damage to your kidneys and will help you retain potassium. Keep an open communication with your doctor and hang in there!

Thank you for responding. We infuse in the late morning since we are infusing slow. I am well hydrated. Doing a diuretic & potassium 12 pills a day & 40 meq during the infusion. Have tried a couple diuretics, one did nothing, one was way to strong & made my kidney #'s go through the roof, so hopefully this one is the ticket. Will find out tomorrow if we are going to split the infusion up to twice a week or try another different one. Doctors have not figured out why I have a difficult time absorbing potassium. Took 4 days in the hospital getting potassium levels from 2.1 up to 3.4 6 bags of 60 meq.

I'm so sorry for the frustrating circumstances. It sounds like the doctors are doing what they can. Do you have a cardiologist and nephrologist on your case to consult? Let me know how things progress for you.

Oh for sure, cardiologist, nephrologist, infectious disease, hematologist & neurologist. They are my dream team & all work together. Thanks Hope you are a doing good too.

Outstanding!

Yes, I am on Cuvitru and have last trial dose today. I take 22 grams every other week. I take Tylenol 500 ( 2 of them) before infusion and drink lots of water 24 hours prior and after to prevent headaches. Getting less redness and pain if I put it in thighs instead of stomach. I have a little heat at each site the first day. It was suggested to put ice on sites after infusion if needed. I am getting more energy and less pain in joints and muscles since I started it. Next month I have to start paying a lot for the medicine (in the thousands) until out of donut hole. If we don't want to have more problems, we need to get our infusions.