For Those on IVIG. Can you Keep using Antibody EBV tests to monitor progress? Or is it skewed ?

[josephine2]

Hi - will have learn how to quote

Post menopause so I rarely get migraines. I used more imitrex in a week that I have in the last five years.

I learned that in 2016 I was infusing gammaguard at 28mgs in 3.5 hours. I am about 177 lbs.

This last time I infused 30mgs in the same 3.5 hours at about 178 lbs so I have to take longer infusions with saline following (about 250 mls according to pharmacy). That's still no guarantee to stop migraine.

But I also want blood work before the next infusion for kidney function - and maybe need more tests to auth oxygen, too. I don't know. Anything else? I just wrote Levine.

My migraines stopped after 6 days. I never started the opiod. I can't face going through these migraines again.. I can deal with one but 6 has left me so compromised and weak, I am afraid of the infusion. I'd switch to subque if the next IV goes badly. If subque goes badly, I'd have to abandon which is too bad since I believe IVIG almost resolved altogether my sinus infections. Now I'm in some long flare with swollen glands, streaky and red sore throat, etc. This flare is the longest in a long time going on almost 8 weeks - didn't respond to amox. Trying to do this not on Lunesta hard. Unisom turned out to feel like poison! (the nonantihistamine kind) THnx all Jo

 

[Gingergrrl]

I learned that in 2016 I was infusing gammaguard at 28mgs in 3.5 hours. I am about 177 lbs.

IVIG (not SubQ) but IVIG doses in grams so I assume that you meant 28 grams (not 28 mgs)? If so, that is a lot to infuse in 3.5 hours especially if you have a history of migraines.

This last time I infused 30mgs in the same 3.5 hours at about 178 lbs

Again assuming you mean 30 grams, this is even more to infuse at 3.5 hours! I am currently doing 27.3 grams over a total of seven hours and I do this three days in a row. So I have a 3-day split dose that totals 82 grams w/each day being 27.3 grams in approx 7 hrs (but eight hours if you count the time that I take the pre-meds, get the IV placed in my arm, do the final 20 min D-5 dextrose to flush the line at end of infusion, remove the IV, etc).

But I also want blood work before the next infusion for kidney function

I think this is a good idea.

If subque goes badly, I'd have to abandon which is too bad since I believe IVIG almost resolved altogether my sinus infections.

I really think a slower infusion speed, splitting the infusion into 2-days, taking pre-meds (if you do not already), drinking more water on day prior to infusion plus day of infusion, etc, could all really help. ETA: This not only reduces severity of headaches, it reduces the other risks like aseptic meningitis, blood clots, pulmonary edema, etc.

Am curious, if you are doing 28-30 grams IVIG total is this for immune deficiency vs. an autoimmune issue?