IVIG for hypogammaglobulin
I received IVIG gammaglobulin since sept 2005 till august 2010 receiving monthly infusions. I would always get extrememly ill for 4 days afterwards with fever, migraine, fatigue. In fact I was so sensitive to the infusion that they always had to run a full bag of saline right along side of the gamma to water it down, so to speak. I always drink tons of water and take 4 benedryls prior and during the IVIG, to no avail, I still will get sick.
So in august I changed to the sub-Q and I have been trying to tweak it since then. If I do have symptoms they usually last just a day, but it is still four days a month. I like the sub-Q better because until this January I was staying pretty infection free. Then January hit like a lion and I have been down more than I have been up. My IgG numbers are better now even over 700 which for me was a rarity. I think the Immunologist I saw all liked to play the "let's see how low we can go"
My dosing now on the sub-Q is 50g per week. I think it was a little more when it was monthly IV infusion.
A big plus for the sub IVIG is that you don't constantly wear and tear on the veins. I got tired of the infusion center always bugging me about putting a port in just for their use. The last time that happened I got a MRSA in that port so I am real gunshy.
My question is this. Am I the lone ranger here or do others of you have trouble finding an immunologist who is interested in the least about seeing us get better. I've only had three different immunologist since 2000 but as time goes on, they've dropped me leaving me in the lurch for getting treatment. Then I'm back to square one with the "how low can we go" game. Until I changed to the sub-q therapy my IgG levels were never in the normal range always skimming 500. I'm once again looking for a new immunologist as the current one knows nothing about sub-q and if I want to stay on it, he's not interested. Do you also find a time when the doctors seem to get bored with your care? To put it mildly I'd like to actually find a doctor who wants to see me get better, not just survive. This is not the day and age to have a chronic illness as far as my example. Of the doctors I see each year, 90% of them refuse to take me as a patient. I've tried everything from sending my records 3 weeks ahead to dancing the texas two step for 'em. Nothing doing. When I first became ill in 1999 the doctors would try to explain their shame away for not taking me. Five years later they were still slightly embarrassed, but the shame had passed. Now they don't even have the curtesy to tell me to my face , but send the nurse in to give me the bad news. Does anyone know of a way that a patient can find out if a doctor will take them or not, before the visit. Because at this rate, I am never able to find a good one. Thanks, I live in the San Antonio area, if anyone is near. I found Vivaglobulin to be less symptomatic than the Hizentra I take now, go figure?
Last edited by perfectlypeg; 02-08-2011 at 07:00 AM.
Reason: I added which IVIG product I use.