Haven't posted in awhile...I had my first DE cycle, ERA tested, extra progesterone/blood thinner 5AB embryo result in a chemical pregnancy in mid December which really shook me. Felt like everything was lining up right and I couldn't believe when my positive test disappeared so quickly.
Before Christmas, I asked about immunology as my doctor hadn't recommended that to date...I pressed for NK cell testing and thyroid antibodies as I only have two embryos left from my DE cycle and they both need to be transferred together.
My consultant just called me back to say that the NK cells were at 21.5% where high is 20%. She's consulted with another colleague at the clinic who, I think, specialises more in fertility immunology and has come back with the recommendation that I have the IVIG infusions, and if I didn't want to foot the cost of those, I could opt for prednisone instead.
Does anyone else struggle with how the goalpost seems to be constantly changing?! One minute people tell you that they don't see much benefit in progressing with these types of protocols and then the next minute they're recommending it to me?
My husband is worried about me being immune-suppressed during the pandemic. Did anyone else choose between the two? I know steroids are much cheaper, but I couldn't really get out why IVIG was better, even though it was the recommended treatment. My doc explained it was super expensive and that I could choose steroids and was kind of expecting me to say no to the IVIG due to cost. I told her we were going to think about it as I had absolutely no idea what to say straight off the bat!
Just feeling a bit overwhelmed today, another path to navigate with very little certainty. And it's my last go. I don't know whether to feel happy that there's a 'reason' or just feel like things are even more unclear and that there's something else wrong with me that needs fixing.
Not sure what I'm asking exactly - but if anyone has any words of wisdom I'd love to hear - lol. And what's the difference between intralipid and IVIG?? I thought they were the same so now I'm even more confused!
Thanks for listening x
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minnesota_girl
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Hi lovely, I know exactly what you mean about the goal posts changing.
It's hard to get a grip on what you actually should do for the best.
Have a look at this link, as it explains the differences (basically IVIG is made from human cells and Intralipids are from soya) - fertility-academy.co.uk/imm...
I opted for intralipids and prednisolone, as my consultant seemed to think that if those didn't work, then IVIG is the next step up (so to speak) - and as you say it's very expensive compared to the other 2.
I wasn't worried about being immuno compromised during the pandemic as I was being careful anyway, so as not to interrupt my treatment.
I'm going to go back to my doc and ask why they suggested straight to IVIG versus intralipids. It may have been cause it's my last two embryos I'm not sure. Did they give you a choice also?
I'm less worried about the immuno angle than my husband, but he has GAD (Generalised Anxiety Disorder) and is on meds for it and any angle on my health triggers him so we just sometimes bear that in mind as we progress with treatment. But I agree with you, I'm happy to just isolate if this is what it takes!
I think IVIG is stronger, so if your immune cells are really high you might need the stronger treatment to lower them. Or perhaps as your using DE they want to be really sure. I was given the option but (sounds silly) I wanted to have something in my back pocket in case the intralipids and steroids didn’t work.Which thankfully they did; 6th FET but first time on immune protocol and I’m 30 weeks.
Aw that must be stressful for you both, managing IVF and GAD. But as you say, you do what you can xx
I've seen and heard of quite a few successes after long-term repeat failures on intralipids which is why I was curious why my clinic didn't propose them and went to IVIG. my levels are 21.5% and high end of the scale is 20%? I think I'll ask the doctor about it and see what they say.
IVIG did nothing for me, but steroids with intralipids worked. My specialist said that intralipids or IVIG is not worth bothering with unless it’s with steroids for a comprehensive treatment x
I also transferred a 5AB PGS tested and ended in a chemical pregnancy. I decided to do lots of tests after that and all came back normal, despite that my clinic decided to put me on steroids and immunosuppresants also they suggested to transfer 2 embryos in case one is attacked by my immune system. Both embryos stacked and now I have my little twins in my arms. I don't have any experience with other immune protocols just wanted to share my story. Take care 💕
Hi Ranchu, congrats on your little ones That's the other thing, my consultant also thinks that it's likely that this is also bad luck and she thinks it could just work next time - although it's a bit harder for her to say that now with the elevated NK cells response. Did you do the NK cells then and it was normal?
Yes, I knew the test results for my NK cells. I also did lots of blood tests even to check the compatibility with my husband. All these because of the 3 chemicals in the past. Only steroids helped me. I will be forever grateful to my doctor that he prescribed me steroids even without elevated NK cells.
My immune results showed elevated NK cells and high TNF alpha or TH1 dominance (whatever that is!) one doctor said IVIG and prednisolone and another said intralipids and hydroxychloroquine. We went for the second option as it was much cheaper and less immune suppressed and am currently 28 weeks pregnant with no complications. I think unless your levels are sky high intralipids are the way forward.
I think it depends on which of your NK results are elevated as to which treatment you’re offered too.
My CD56%, CD19+CD5+ cells were all elevated alongside elevated TG antibodies so I was given dexamethasone daily alongside intrapilids at the start of my stim treatment for cycle 2. I was never offered IVIG. I did have about five days of prednisolone straight after transfer but then they swapped me back to dexamethasone as I was responding better to that. I’m now 32 weeks pregnant with twins ✨ so I really believe my immune treatment helped my embabies stick. Best of luck to you 🍀 xx
I am so sorry to hear what you are going through. For my last (successful!) transfer, we had 2 embryos left, my consultant originally wanted to transfer both embryos, as they weren't such good quality and I hadn't got pregnant with top quality ones (AA and even PGD tested)! He spoke to another colleague who specialises in maternal-fetal medicine and immunology (I have an overactive immune system and several autoimmune diseases) and they decided they would only transfer one embryo. I was very worried as the quality wasn't so good.
They put me on hydroxychloroquine and steroids (in addition to heparin and aspirin) and, after a very long journey, many tests, surgeries and trying so many different things, I can say that I am 27 weeks pregnant today thanks to the hydroxy and prednisone. If that hadn't worked my next step would have been IVIG or intralipids.
I wish you lots of luck and please feel free to ask any questions you may have x
I was on prednisone and IVIG and intralipids when these got too expensive last year and I’m holding my baby girl as I type. My NK were about 22%. It honestly made the difference- but I had to be on both. Steroids are cheap and IVIG so expensive but they both in a way do different things. PM me if you would like to know anything else & good luck. I’d go for both personally
Hello! I have a very similar challenging decision following my recent immunology testing. I also have high NK cells and am being recommended both steroids and G CSF. I am trying to find evidence based research on its use in the first 12 weeks during IVF however cannot find much research.My advice is to read as much as you can and discuss with the doctor re pros and cons. Every medication has its SE profile and its not easy to take these decisions. I am afraid that I am leaning to not take g csf however will probably feel guilty if it doesnt work.
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