Have you had IVIG treatment for immune issues?

Hello,

I have slightly raised NK cells and the best treatment to manage this is IVIG based on analysis of this, intralipids and prednisone. Annoyingly it’s the most expensive treatment and comes with added risks as a human blood product. Please can you get in touch if you have had IVIG treatment? I am keen to know:

1. The reason why you were recommended this treatment (eg implantation failure, miscarriage)?

2. When you had treatment (eg before transfer then x-weeks following)?

3. How many treatments did you have?

4. Was it successful (and was the embryo PGS tested)?

I was recommended to have an infusion before/around FET (of a PGS normal embryo) then again 4 weeks later if pregnancy is confirmed.

My history is that I have been pregnant 3 times following 1 IVF / 2 FETs, have had a live birth and 2 MMC both lost at 6-7 weeks (and 1 of these confirmed as chromosomally normal) from these. I am undecided whether to have IVIG prior to transfer or whether to take only once pregnancy is confirmed (given the cost). IVIG is not proven and it’s very expensive making my decision about if / when to have it hard.

Thanks in advance.

[Dogpark]

Hi Hidden

I share your concerns on IVIG.

My clinic recommended IVIG to a friend of mine, she did it only once before the transfer and felt sick the next day so, they did not repeat the infusion after her BFP.

I asked for a second opinion from another consultant in another clinic which I respect and she told me that there were no studies showing that IVIG was more efficient than Intralipid and so, for cost reasons, she would recommend me to stick to Intralipid. As for the risks associated to a blood product, she said she that there has been a couple of cases of hepatitis C following IVIG treatment but that overall it's very rare for anything to happen. Her conclusion was that she thought that only one clinic in London was still prescribing IVIG and that most other clinics had moved on to sticking to Intralipid only.

.

[Hidden in reply to Dogpark]

Thanks for this - really interesting.

The trouble I have is that my clinic did a blood test which not only confirmed my NK levels but tested my blood’s reaction to the different treatments. Intralipids and prednisone had a 30-35% and 5-10% impact in lowering these levels respectively while IVIG had a 60% impact.

As a result, they are likely only to prescribe me IVIG or nothing at all - as they believe anything with < 40% impact is not worth doing.

They don’t typically do IVIG and most people don’t need it. So they are not pushing it, but equally I doubt now would write a prescription for prednisone which I took when pregnant with my son as there’s no evidence it will have any impact. Or intralipids. I suggested a combination of both would get me over their 40% hurdle.

They did say that if not administered slowly and carefully there is a risk of getting sick from it. They are requiring me to go to hospital to get it done which is why it’s so expensive.

Thanks again

[Hidden in reply to Dogpark]

Out of interest, why did your friend end up having IVIG? Did she have raised NK cell results and evidence that this was the most effective treatment like me? I had the Chicago test done that gave me my result (so blood, not biology / scratch).

[Dogpark in reply to Hidden]

All I know is that she had NK cells tested via endometrial biopsy (from her ERA test). The test showed elevated NK cells. She was due to doing Intralipid infusions + steroids but because she had very few embryos left, my clinic recommended that she goes with IVIG "because this is more efficient than Intralipid". I don't think she did more tests than that.

I heard that there is a controversy as to how best to test for NK cells, whether via blood test or endometrial biopsy.

[Hidden in reply to Dogpark]

Thanks - yeah, totally. I just didn’t want to do further biopsy etc. It’s a minefield!

[Hidden]

Slightly different but I took prednisone from BFP till 12 weeks pregnant as I had slightly raised nk cells too. My daughter is healthy & has no birth detects I’m hoping that can offer some reassurance. Really sorry for your losses & hope you have a successful pregnancy soon xxx

[Hidden in reply to Hidden]

Thank you. I took it as a precaution with my son following my first MMC. However the NK cell test I recently did suggests I don’t respond much to prednisone so I’m now in a tricky situation whereby my doctor would either prescribe IVIG or nothing (as the evidence doesn’t suggest the other 2 will work).

I presume the test you did didn’t check which form of treatment would decrease the NK cells, but just that your NK cells were raised?

Thanks

[Hidden in reply to Hidden]

Congrats on your son. No I didn’t check I just took the prednisone as more of a precaution alongside progesterone pessaries fertility dr edged on the side of caution. I wanted to give the pregnancy the best chance possible ( I’d had a previous chemical pregnancy ) Oh that is tricky sorry I can’t be more help. I wish you the best with whatever decision you make & hope you can give your son a sibling soon xxx

[Hidden in reply to Hidden]

Thank you! Yes, rock and hard place spring to mind!!