IVIG for elevated NK cells?

(17 posts)(9 voices)
  1. Hello, everyone.

    Just found out my NK cell count was 15 and my RE is offering to do IVIG for that. It costs $2000. I've been looking online and finding, of course, conflicting information. Some web sites emphasize that there really isn't enough evidence (one even calls this "unethical"). Other REs seem to be all for it.

    Also, I found some people who think it should only be considered after a certain number of IVF attempts...

    I have only done one IVF, last fall. I have slightly elevated AMH (around 0.8) and either the anti-Cardiolipin or anti-phospholipid is slightly elevated. My embryos were not very good quality (I had 2 grade Bs and 2 grade Cs). I also had the integrin test, but the results are not back yet.

    I guess I just wanted to see what people thought about having the IVIG or trying again without that. For people that have done the IVIG--what has been your experience with that?

  2. Some places who deal with these issues have replaced IVIG with intralipid therapy. Much cheaper, less risky, and so far as effective in appropriate doses.

    Go to the SIRM website and read about it and ask questions. haveababy.com

  3. I guess I just wanted to see what people thought about having the IVIG or trying again without that. For people that have done the IVIG--what has been your experience with that?

    I've had three bfp cycles out of 9. I had the immune testing done and had elevated NK cells and APA's. We first tried baby aspirin and Heparin, but got a BFN. The first BFP I did Ivig (at a SIRM clinic). Yes, it was over $2,000 just for the medication, then about $600 for the infusion. I got pg and had to do the infusion again, so it added almost $6,000 to that cycle. A few years later I did an FET and SIRM was now doing intralipid infusions, rather than Ivig. Two things I thought were great about this switch: it is not made from human blood products, and it cost $12...yes, TWELVE dollars, rather than thousands. I got pg, but m/c. Did another cycle and did the intralipids again. I am so glad they switched. Some may not believe it made a difference. I do, simply because I had a great donor embryo cycle that should have been "the one." After the bfn I got tested for immune issues. Sort of treated them with BA and Heparin, but that wasn't enough in my situation...the rest is history. I guess after the first positive cycle, I was afraid not to do it again (just like I did acupuncture for those cycles). I honestly would have done the Ivig again if that's what my RE advised, but they (at SIRM, and my current RE) say it's not necessary and the intralipids get the same thing done.

    Good luck to you.

  4. had success with IVIg also at SIRM, after 2 failed fresh cycles. haven't done intralipids, but I know you can send your blood to Millenova (millenova.com I think) and they can test it to see if intralipids and/or Ivig will be effective for you in reducing NK cells.

  5. FYI: SIRM no longer uses IVIG. They use Intralpids instead.

  6. I did IVIG with SIRM (high normal NKA, but RE thought it would be a good idea to do IVIG anyway), in 2 of my fresh IVF cycles, without success.

  7. I did Intralpids for my last FET cycle. It was inexpensive (relatively speaking) an easy. An IV infusion, no side effects, took about an hour. I read a magazine.

    I got a BFN but I am pretty sure the reason is a choromosomally abnormal embryo due to age.

    There is very little data on any of this stuff. And it's really hard to say if IVIG/Intralipids worked or didn't. There are so many factors involved in this process, any number of things can be responsible for a BFN (or BFP).

  8. hdsass,
    I am hesitant to post on this issue because I don't want to proselytize that one thing/treatment is better than another. Ultimately, we all need to make the decisions that are the best for us. But...I will tell you my personal story and it may give you more to consider, it may not.

    I have been dealing with IF for over 4 years. In that time, I've been pregnant 7 times, had 6 m/c including one ruptured ectopic and one second trimester loss of triplets. I've done many natural cycles, as well as IUI, IVF and DE cycles. After my 6th m/c, I decided to do full spectrum immunology testing with the Beer Center. Immunology issues were about the only thing I had not checked and I wanted to be sure I'd checked everything I could. My history is AMA, and high FSH. I've had some tubal issues, but mostly seem to have gotten pregnant relatively easily but have been unable to bring a pregnancy to term.

    After my testing was complete, there was very little evidence saying my immune issues were CAUSING my losses. Many of my tests came back OK, but I did show elevated NK Cells and a few other things. My NKC level was 22%. This is elevated, but not sky high. The suggestion was for me to do IVIg. I looked into it, and came very close to doing it, but found out my insurance would not cover it. It can be VERY hard to get it covered, and some providers are more sticklers about it than others (I have Aetna). While I do believe that immune issues can be and are often valid, I began to feel like doing IVIg was a pretty extreme measure and something that was really not very proven. I did quite a bit of research, joined the Yahoo Group for Reproductive Immunology and talked to a number of people. I explored Intralipids, but those are even more experimental than IVIg, and my feeling was that if I was going to move forward, I was either going to do IVIg or nothing. I felt intralipids were still too much of a gamble, and the Beer Center (who happen to be the long time authority on pregnancy and immunology) do not support the use of intralipids as viable therapy for high NKC. They would have allowed me to try it, but they did not promise anything. To me, it seemed a waste of money.

    After long consideration and debate and further research, I decided to try something all together different. I used high doses of Fish Oil to bring down my NKC levels. If you do a google search on NKC and Fish Oil, you will see that there is research that supports this approach. Even the Beer Center supports it and there is information on the Yahoo Group boards that I mentioned. My feeling was that using Fish Oil was a much lower risk and cost than trying IVIg and likely had as much chance of working in my circumstance. I also added low dose aspirin, prednisone, and a few other things relevant to my personal history.

    I am currently 25w pg with a singleton and doing very well. I still take 5000mg of fish oil daily and do believe it has played a role in my success. Of course, we all feel like whatever we did on "they cycle that worked" was the cure all for us, so I can't say if I think it would be best for you or not. But, I wanted to throw it out there for your information, and so you can do your own research if you choose to do so. Your NKC levels are lower than mine, so I'd say it's at least worth looking into. I know we are all willing to try ANYTHING to bring a baby home. On the other hand, since my NKC were not extremely high, I was willing to try something other than IVIg once and see how it went. For me, doing multiple rounds of IVIg (since I'd likely have to do them during pregnancy if I was successful) seemed like I was trying to kill a fly with a hand grenade, but this is just my opinion.

    By the way, an AMH level of 0.8 is not elevated, it's low (in the low-normal range, actually). The lower your AMH, the more comprimised the quality/quanity of your eggs. High AMH would be over 3, which might signify something like PCOS.

    Whatever you decide, good luck to you.

  9. Thanks everyone for all your replies. I have a lot to think about...

  10. Interesting about the fish oil. I've taken it for years, and still do, so maybe that was a factor in my success? (except that I was taking with all the bfn's, too).

    As I always say, this ttc is a cr*p shoot and you can never really know why it worked one time and not another...especially if the protocol is the same. I figured if it wasn't going to harm me (acupuncture, etc.) then what was the harm in adding it in? Just didn't want to have the "what if" nagging me forever.

  11. As I always say, this ttc is a cr*p shoot and you can never really know why it worked one time and not another...especially if the protocol is the same. I figured if it wasn't going to harm me (acupuncture, etc.) then what was the harm in adding it in? Just didn't want to have the "what if" nagging me forever. I completely agree. And honestly, I can't say if the Fish Oil worked or not...I have no clue!

  12. I had three fresh IVFs, first was a chem, second and third were BFN. First was actually a BFN by the time I had my beta, but I did get a + on three brands of HPTs before I started bleeding. (I had a canceled cycle before all this, too.)

    Along the way I had immune testing and had elevated NK cells. For my fourth fresh IVF, I had IVIg during stims and got my first every positive beta. Since it was too early for an u/s I had intralipids then a second IVIg at around 10w.

    I did a different protocol (EPP) and but got about the same number of eggs and embryos as my previous three IVFs. So was it IVIg/intralipids or the different protocol? I can't say for sure but I believe the immune treatment made a difference.

    My clinic charged $3,000 for each IVIg and $300 for each intralipids. They no longer recommend IVIg, just intralipids. We have our one and only frozen embryo from this last cycle so if/when we end up using it, I will probably elect for intralipids only.

    BTW, my original dx is hydro tubes and they were removed prior to my first IVF.

  13. My clinic charged $3,000 for each IVIg and $300 for each intralipids. They no longer recommend IVIg, just intralipids. That's so interesting Karen...it is crazy how even these specialized clinics that deal with immunology deal with it so differently. If intralipids had been a more accepted form of treatment among my doctors, I might have tried it.

    I agree with Karen that, treatment options aside, there really IS something to immune issues (including celiacs, which isn't exactly an immune disease).

  14. I have sky-high ANAs and Coeliac Disease and had to fight to get Intralipid treatment here (New Zealand) - basically my RE agrees that there is something to it, and that it will be available here in future, but all the clinics here are very conservative in their approach.

    I agree with Karen that, treatment options aside, there really IS something to immune issues (including celiacs, which isn't exactly an immune disease).

    Morrison, Coeliac Disease is an immune disease:

    en.wikipedia.org

  15. ...had to fight to get Intralipid treatment here (New Zealand)
    I can attest to this...LAKIS has gone to very impressive and unimaginable lengths to obtain intralipids.

    Quote:
    Originally Posted by LAKIS
    Coeliac Disease is an immune disease:
    Of course you are totally right. I was thinking more of the immune issues that would be diagnosed by a reproductive immunologist, but you are 100% correct. Immune issues are immune issues. I wonder if Reproductive Immunologists actually DO or CAN diagnose celiacs? Hmmmm. They should be testing for it at least, don't you think?

  16. Wow, everyone has such different experiences and different opinions...

    My RE really believes in IVIG, apparently. But, my nurse said they just had a patient with elev NK cells that decided not to do it, but she had some good embryos and is now pregnant with twins.

    I found a really good review article on adjunctive treatments for IVF, and it basically said there isn't really good evidence for any of them and there need to be more randomized controlled trials. But, not having good evidence doesn't necessarily mean it doesn't work; just that they don't have enough evidence yet. It's hard to know...

    I think for now, we have decided not to do it. We are really scrounging as far as money goes. Apparently, our RE reccommends IVIG during the cycle and then once a month if you get pregnant (that would be a lot of money).

    As far as intralipids, I would have to go to another state and a different clinic to get that done.

    I do take fish oil for an unrelated condition, so maybe that will help.

    --------------------------------------------------------------------------
    Medical adjuncts in IVF: evidence for clinical practice
    LUCIANO G. NARDO1,2, INGRID GRANNE3, & JANE STEWART4; ON BEHALF OF THE
    POLICY & PRACTICE COMMITTEE OF THE BRITISH FERTILITY SOCIETY
    1Department of Reproductive Medicine, St. Mary’s Hospital, Manchester, UK, 2Division of Human Development, University
    of Manchester, Manchester, UK, 3Oxford Fertility Unit, John Radcliffe Hospital, Oxford, UK, and 4Newcastle Fertility Centre
    at Life, Newcastle upon Tyne, UK

    Abstract
    The cross-talk between the embryo and the endometrium, leading to implantation, is a complex, dynamic and highly
    controlled phenomenon. Over the last decade, a large amount of translational and clinical research has been carried out in an
    attempt to increase the likelihood of pregnancy in in vitro fertilisation (IVF). The purpose of this article was to review the
    literature on the effectiveness of adjuvant therapy in IVF and to provide fertility professionals with evidence-based guidance
    and recommendations. Clinicians who decide to prescribe therapies for which the evidence base is weak, should make
    patients aware of this lack of knowledge and potential adverse effects. There is a need for good clinical trials in many of the
    areas surrounding medical adjuncts in IVF to resolve the empirical/evidence divide.
    --------------------------------------------------------------------------

  17. ivfauthority.com

    www3.interscience.wiley.com
    "Immunological Factors in Pregnancy Wastage: Fact or Fiction
    There is increasingly strong evidence that immunologic factors are involved in RPL in some couples and immunomodulatory therapies may improve the live birth rate in appropriately selected patients. At present, investigation and treatment of RPL require specialized centers with the necessary resources and expertise, and like other complex procedures such as organ transplantation, cannot be done in every clinic and hospital. Immunologic involvement in pregnancy and the possibility of effective intervention are facts; belief and disbelief as bias-based ideologies will always exist (in part due to failure to consider all of the data), but it is the totality of scientific facts that is important."

    www3.interscience.wiley.com

    Treatment with Adalimumab (Humira®) and Intravenous Immunoglobulin Improves Pregnancy Rates in Women Undergoing IVF*

    ncbi.nlm.nih.gov
    Is intravenous immunoglobulins (IVIG) efficacious in early pregnancy failure? A critical review and meta-analysis for patients who fail in vitro fertilization and embryo transfer (IVF).

    www3.interscience.wiley.com

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