Dear everyone, I want to hear about your experience with IVIG if you have been on it for immune issues, and whether or not it has helped you get pregnant or not.
Some background: I'm from Hong Kong and I have my IVF and immune treatments in Taiwan. There are a bunch of HK people doing the same, since Taiwan is much more advanced in IVF and much cheaper than HK too. After 7 egg retrievals, 1 miscarriage and 1 failed transfer, I'm now pregnant while still on an immune protocol (oral meds, arixtra, and monthly intralipid+ivig infusion till 28w).
My RI's main concern is that I tested positive in Lupus Anticoagulant, which leads to highly elevated C1Q (an inflammation issue). I also have slightly elevated NK (ranging from 15% to 25%) and borderline TNF-a (around 8). While many doctors suggested that NK should be ideally below 12% before an embryo transfer (mine has never been lowered than that, and once surged to 30% after the transfer), my RI doesn't think so and he told me that I didn't have to worry about my NK too much because in my case its effect on pregnancy isn't that big, and what I should really worry about was my C1Q. He put me on intralipid first, but after seeing my C1Q wasn't going down after 2 infusions, he added IVIG right before my transfer.
I feel very lucky and grateful that this time it sticks with a day3 8I grading embryo. I don't know how much IVIG has helped. Of course I wouldn't have done it any other way because I trust my RI and I'm willing to try and fortunately can afford the expensive treatment, but I do think that there are many factors and that IVIG is not an elixir that fixes all problems and guarantees success. I still had in my mind that I'd be extremely lucky to have 20-30% success rate even though I've been on immune meds for 6 months and added IVIG this time. I never thought that IVIG is a magic fix.
But we have a whatsapp group where us HK patients who see the same RE and RI share info and experience with each other, and there is one member who is very active in answering questions and sharing her own experience regarding immune treatments. But many of the things she says is not accurate and even wrong. She has 3 kids through IVF. She never had any failed transfer nor miscarriage. She had 3 IVF and all 3 were successful and went on with very smooth pregnancies. She always claims that it's because of her immune protocol (and she thinks she's very smart): using IVIG no matter what.
She doesn't have very severe problems (perhaps just slightly elevated NK and TNF-a), and in 2 of her IVFs she didn't even test her levels but still used IVIG anyway. She never told anyone what exactly her levels were but NK and TNF-a were the only 2 things she knew and kept talking about, among so many other and more complicated immune issues many of us are dealing with, which she has no knowledge about at all. She wasn't seeing the same RI as we do, she saw another RI in another clinic, who is known to be using IVIG on almost all patients, even those with no immune issues, to increase success rate. And most of them only use it a few times until 11w pregnant, including herself, while many of us are on it till at least 28w with regular bloodwork to monitor.
It's very obvious that she doesn't have very serious immune issues, or even none, to start with. What are the odds of having 100% success rate in all 3 IVFs, especially when (she claims to be) having "serious immune issues" (but could stop all immune meds and IVIG after 11w with no issues at all)? But she always says that NK is the "biggest boss" to deal with, ignoring the fact that there are far more complicated issues because she simply has very limited knowledge. She kept advocating people to follow her protocol, to use IVIG no matter what, because she thinks it guarantees success. There are many new members who are new to all these things, and who do not do research on their own, believe in everything she says. They request for IVIG even when our RI doesn't think they need it. Some of them who are not even prescribed intralipid because their problems can be fixed simply by oral meds, would still insist on getting IVIG. They would complain that our RI is not helping them if he doesn't prescribe IVIG, but the fact is they really don't need it.
I try my best to tell them that it's not necessary to use IVIG if their problems are not that serious, or at least they can try and see if oral meds or intralipid work on them first. But they are too influenced and brainwashed by that member, some even think that having NK level at 15%, with no other issues, is already very critical. They also request all kinds of oral meds (when they heard someone else taking certain meds which they're not prescribed, simply because they don't need it, they would think our RI missed it out), request all kinds of injections (humira, cimzia, etc... just because they heard of them from that member but have no idea what they are used for).
IVIG in Taiwan is at TWD26000/100ml (i.e. around USD840), and most of us are paying out of pocket. The said member is one of the few among us who had her IVIG covered by insurance.
I know I don't have to bother myself with their problems if they choose to listen to her and use IVIG blindly, but I just really hate to see her giving out irresponsible and false info/advice, making people worrying and paying more than necessary, while also giving people a false hope that IVIG can fix ALL problems and guarantee success. But I don't have time to give counter advice every time she brainwashes people in the group, since she's very quick in responding like she doesn't have anything else to do even having 2 young kids and a newborn around...
I'm planning to write a blog to share my IVF journey with them, and definitely talk about immune and the correct/responsible use of IVIG. I hope to hear about your stories and experience~