Would love to hear from those who have had either Intralipids or IVIG.
It has been suggested that I have one or the other.
My natural killer cells and cytokines were high.
Can people share their experiences of these? I'm feeling anxious and don't know which to choose.
The intralipids are obviously much cheaper but have less chance of working for me. So if they don't work I'd end up using IVIG anyway which will further delay everything and increase cost! But maybe they will work... I'm finding it really distracting thinking of what to do every single day.
Would value any input as to how others decided, what worked for you, and any side effects. I am such a worrier and my body has already been through so much (like all of us) so these big decisions are very tough. And I must confess I am worried about both treatments but perhaps I don't need to be.
Thank you for any advice you can provide xx
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Skittles11
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Hi Millbanks Thanks for this. Did you test the impact of the intralipids before you transferred and did both the cytokines and NK cells come down? My cytokines seem particularly high xx
I didn’t have any of my levels tested after transfer so it’s impossible to say definitively. But my previous 5 transfers hadn’t worked so it can’t just be coincidence that number 6 wa the one!
Mine were also very high so the intralipids and steroids were enough to do the trick xxx
Hi Skittles - I had IVIG only in the cycle before last, and this most recent cycle I had intralipids and steroids.
I was recommended IVIG the first time by one clinic because they said it would improve things better than intralipid.
That cycle unfortunately ended in miscarriage (but there of course could've been other factors).
I have had since two doctors, more focused on immunology, tell me that they only do intralipid + steroid, as that provides the best coverage for immunotherapy. one of those doctors flat out told me that IVIG wasn't enough on its own.
It's hard because the doctors don't seem to agree, but my clinic in Spain also confirmed their 'standard' immunology treatment was steroid + intralipid.
I'm currently 8+2 weeks pregnant, i've been on 10mg prednisone since the start of my last cycle and haven't really noticed any side effects (it's quite a low dose, Spain tend to do lower doses than the UK) - and the intralipid had no side effects (I've had two doses so far and will have another at 12 weeks).
Is it possible for you to get a second opinion from another doctor on this side of things? I know I've often found it frustrating when given a choice - when really you want a doctor to clearly tell you what they think is best! But what I can say is that having initially been told IVIG is the best option, I'm currently further along having done steroid + intralipid. May be a coincidence, but I know you were after experiences, that is mine!
Thank you minnesota_girl I appreciate your reply and it is interesting to know what the doctors have suggested. Did you have high Cytokines as well as NK cells? My cytokines (TNF alpha) were really quite high. I think the doctor plans to put me on steroids as well as either intralipids or IVIG. Have you been testing via bloods to see the impact of the intralipids and steroids? I think why I'm a bit worried is the first bloods I had drawn were mixed with IVIG and also with Intralipid in the lab and the Intralipids showed an increase in NK cells. But the doctor says not to hold any weight on this because the lab results are not representative of "real life". But it makes me really unsure on what to do. Xx
Hi Skittles - I understand and completely emphathise with how hard it is to pave the way of immunology treatment because it's not standard protocol etc yet.
The way my doctor explained the tests was that they don't just test your blood, they expose the NK cells in your blood to actual pregnancy tissue to see how it reacts, which is where the results come from. And then they test that also after time against the various treatments.
All I can say is that I had elevated T4 and elevated cytokines, and that according to my test results I should've had IVIG to have the best result (intralipid on its own had almost no reaction), and for me, so far, that hasn't panned out - so I've started to trust the immunology docs a bit more when they recommended the cheaper option plus steroid.
I know it's super hard to understand what to do, but I expect if you've got an infusion (of either type) + steroids you're in with a fighting chance xx
I had Prednisolone prescribed from Uk - 25mg daily and the doctors didn’t want to give me intralipids. So I got in touch with a reproductive immunologist in my country and there I had IVIG at week 6 and Intralipids at week 10 and will have another Intralipid at week 14. Everything was so cheap compared to UK and I did repeat NK cells tests there which cost nothing… hope it helps, let me know if any questions.
That's really interesting to hear that you had both. Do you mind me asking - did you have high NK cells and cytokines? And also why the original doctors did not want to give you intralipids, was it just not something they offered? Did you have any side effects from any of these? Thank you so much and I hope all is progressing well for you xx
hi yes I have high NK cells and cytokines. They test the NK cells activity in a pregnancy like tissue and add Steroids, Intealipids and IVIG to see which will suppress them most effectively. Because Prednisolone for me was suppressing them according to the tests similarly to Intralipids and IVIG, the doctor in UK decided to give me the most inexpensive treatment (Prednisolone). I know there is no scientific evidence for all these immune treatments, but for my comfort I wanted to add the Intralipids hence started to find ways to do it in my country.
The reproductive immunologist there said I need IVIG immediately after positive test and then Intralipids depending on the results.
I am going to tell you that even though I was taking Prednisolone for 10 days (between the positive test and week 6), it made absolutely no difference to my NK cells, they still remained high (I tested abroad). Then I did the IVIG in week 6 and continued on Prednisolone for another 4 weeks. At week 10 I repeated the NK cells test and it was still high and neither the Prednisolone nor the IVIG made any difference… So I did the Intralipid at week 10 and in 4 weeks time I will again repeat the NK cells test abroad but I am sure it will still be high and will do another Intralipid probably. However at that point I should be stopping the Prednisolone as it is only taken for the first few weeks.
For my comfort I followed what the reproductive immunologist suggested (IVIG and Intralipid) but as you can see all these Immunology stuff are a bit strange. The reproductive immunologist said they see many successful pregnancies even with high NK cells.
I had no side effects at all from IVIG or the Intralipids. Are you on Steroids already? Whatever you choose, wishing you the best. I would say probably go for Intralipids as it is less expensive.
Are you also on Clexane? I think there is a famous protocol that combines Clexane and Steroids (Prednisolone) called “The Bondi Protocol”. Maybe do some Thrombophillia tests if you haven’t done already and they can prescribe you Clexane and Prednisolone for the NK cells which hopefully in combination will work well.
that's interesting as I am on Clexane also...I hadn't heard of it being used for immunological reasons - but I have to admit my clinic just put together my whole protocol and I wasn't sure what was for what (5th round, had done Clexane before, but steroid is new for me this time!)
hi Skittles. I had high NK cells and cytokines also. I was told only intralipids or IVIG would make an impact. IVIG was bringing them down more effectively but intralipids brought them down to a safe cut off point, which is why I didn’t hesitate to try that, on advice from my Dr.
It was a real leap of faith as it was our last embryo after 8 previous failed transfers, and it miraculously worked. Am holding my 7 month old in arms now.
I think it’s great you’ve for the information and scientific tests to back it, I was told a lot of immune therapy can be a shot in the dark.
Could you find out if intralipids make enough of a difference to the levels?
I was really scared about the side effects and I didn’t feel a thing. Weirdly I think I remember feeling better, maybe it was all the rest whole having them done as it took 4 hours!
Thank you for your reply and that's a lovely ending to the story now you are holding your baby. I went for intralipids this week and will book in again, then after the second lot I will have my levels tested to check if its making a difference xx
I have been on intralipids and steroids (prednisalone) as well as Clexane (I’ve been taken off this now as had a bleed) for high NK cells!! I was never re tested to see if these brought down my levels but All three rounds where I had treatment have resulted in my two girls and I’m pregnant with my last embryo. I had two failed transfers and a few miscarriages before this with no treatment so I do really believe it works.
I had an intralipid day of transfer then 4 weeks after after my positive result and then 4 weeks again after that. Steroids I took before transfer and take until 12 weeks then wean off- I take 10mg a day xx
Thank you for this, that's really helpful and reassuring that the treatment worked for you. It sounds like I'll be on fairly similar medication to what you've described. Xx
Thank you Seren. I appreciate the input and I had my first intralipids this week, I will be retested prior to a transfer to check what my levels are doing to make sure they are going in the right direction xx
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