Dear Dad2be,
<br/>
<br/>I am categories 1,2, and 5. My husband and I did four rounds of LIT in Mexico. The first two were so we could be cleared to try and conceive, the last two were lower my NKs because IVIg did not lower them (I was also pregnant for the last two). Our daughter celebrated her first birthday last November.
<br/>
<br/>Also, I am with UHC and they refused to cover IVIg. We did two internal appeals, then we went to our state insurance commission. I feel as though the state did a very thorough job of reviewing my records, but the upheld UHC's denial. They would have made UHC pay had we had IVIg before I was pregnant to treat all my autoimmune issues, so that's something you may want to keep in mind.
<br/>
<br/>Also, we were lucky in that LIT lowered my NKs by more than half. Which is why we decided to go to Nogales for treatment while pregnant. Again, it lowered my NKs but I was also taking Trental (a prescription), Wobenzym N (a supplement), fish oil and Ceftin (a broad spectrum antibiotic). Because sometimes when NKs flare, there can be an underlying infection. Trental and Wobenzym N can also lower NKs as well as fish oil. There is now a perscription fish oil, Lovaza that your doctor can prescribe.
<br/>
<br/>Another option you may want to look at is Intralipids instead of IVIg. It is a soy based product that is infused in about 30-45 minutes. One of the labs ( I can't remember which one) can test NK activity with IVIg and Intralipids so you can see which option would be better at suppressing them.
<br/>
<br/>I can not speak to Humira or Enbrel.
<br/>
<br/>Take care and good luck to you and your wife!
<br/>Tracey
<br/>

<br/>Hi ladies-
<br/>I am currently under the care of Dr. Kwak-Kim in Chicago. She was GREAT at identifying multiple blood clotting disorders (MTHFR, PAI-I, Factor VIII), +APA, and slightly elevated NK assy activity. We actually got pregnant on our 1st cycle of treatment with her (and our 1st IVF) and are now 11 weeks pregnant with twins! We are still in shock as we never had a +beta in our 2 1/2 years of trying.
<br/>
<br/>During our initial work-up, my NK assy panel and cytokine results were:
<br/>50:1 - 17.5 (should be < 15)
<br/>25:1 - 11.0
<br/>12.5:1 - 3.8
<br/>IgG conc 12.5 50:1- 6.6
<br/>IgG conc 12.5 25:1- 8.0
<br/>IgG conc 6.25 50:1- 9.6
<br/>IgG conc 6.25 250:1- 7.4
<br/>
<br/>TNF-a:IL-10 (CD3+CD4+) - 20.1 (should be 13.2 - 30.6)
<br/>IFN-g:IL-10 (CD3+CD4+) - 8.0 (should be 5.8 - 20.5)
<br/>
<br/>On CD3 of our IVF conception cycle, my 50:1 was 10.9. Dr. Kwak-Kim did not recommend IVIG as part of our conception treatment, and instead prescribed 30mg prednisone since it was only slightly elevated during the initial work-up.
<br/>
<br/>Upon a positive beta, I was tested again. My 50:1 spiked up to 19.2 and Dr.Kwak-Kim recommended IVIG. We immediately had it done (I was about 5 weeks along) and paid out of pocket - ouch!!
<br/>
<br/>1 week later I was tested again and my 50:1 had dropped to 6.9, but my cytokines had flared to 44.4/8.4. She recommended another dose. We did IVIG #2 again at about 8 weeks.
<br/>
<br/>So I just got the results back from IVIG #2- my 50:1 was 18.5 and by cytokines were 12.8/4.9), Sine the 50:1 was slightly elevated, she is now recommending a 3rd dose of IVIG.
<br/>
<br/>So I have a few questions for you all:
<br/>-Has anyone not done IVIG when recommended and had a healthy baby? After the IVF and 2 IVIG treatments, we are strapped for cash. We can continue to do the treatments, but things will need to get much leaner around our household!!! ! I typically would not question a doctor (and am not in this case either), but my levels on the latest round are only slightly elevated.
<br/>-How much does a positive pregnancy test increase NK/cytokines anyway? An embryo is a foreign body and should produce some sort of reaction until your body gets used to it. I wonder how many pregnant ladies with undiagnosed immune issues would have elevated levels throughout their pregnancy and it all turn out to be OK?
<br/>-Anyone have other successful methods in lowering NK/cytokine activity? I asked Dr. Kwak-Kim about Intralipids, but due to my PAI-I she did not recommend it. I was taking higher levels of fish oil at the start of my conception cycle which I think contributed to my 50:1 score of 10.9. I've scaled back but am still on 4 pills/day.
<br/>
<br/>Thanks so much for your help ladies! We really appreciate it and all the advise you've given us over the past year!
<br/>Suzanne
<br/>
<br/>

THERE IS A SECOND WAVE OF NK CELL ACTIVITY THAT BEGINS AS EARLY AS 18
<br/>WEEKS IN 17% OF MY PATIENTS THAT NEED ATTENTION OR SUPPRESSION WITH
<br/>ADDITIONAL LIT OR IVIG OR OTHERWISE WE SEE INTRA UTERINE GROWTH
<br/>RETARDATION OF THE BABY.
<br/>
<br/>

Which insurance do you have? I have Aetna, and they cover everything with Dr. Kwak in Chicago

Hi,
<br/>> >
<br/>> > Just wanted to chime in b/c I had the same thing--no IVIg
<br/>> suppression
<br/>> > in test tube. This does not mean you are not a candidate for
<br/>IVIg.
<br/>> I
<br/>> > was assured by Jane (and I think DB and DS) that even if your
<br/>NKs
<br/>> don't
<br/>> > suppress in the test tube IVIg is still working in your body.
<br/>Also
<br/>> > Humira and LIT help w/ suppression. I was put on Humira right
<br/>away
<br/>> and
<br/>> > went for 2 LITs, but really my NKs stayed high until twice late
<br/>in
<br/>> pg
<br/>> > they came back low to my surprise. But my point is that w/ high
<br/>NKs
<br/>> on
<br/>> > paper I did all immune txs (oh plus later added Dexamethasone
<br/>to
<br/>> help
<br/>> > suppression), did IVF and conceived and carried healthy twins
<br/>(5
<br/>> months
<br/>> > old now). I was aggressive tho: did many IVIgs, 3 LITs (did
<br/>> > one "emergency" LIT before embryo transfer for good measure due
<br/>to
<br/>> high
<br/>> > NKs) and did regular IVIg until later pg--I think week 22-23 or
<br/>so.
<br/>> So
<br/>> > you can still succeed w/ no IVIg suppression you just might
<br/>have to
<br/>> be
<br/>> > a bit more aggressive. Oh, about your question re dose, I
<br/>thought
<br/>> that
<br/>> > higher doses were Rx'd for poor suppression but I was always
<br/>given
<br/>> the
<br/>> > standard dose of 25 g by DB and DS. I think for the 2 IVIgs
<br/>before
<br/>> my
<br/>> > IVF I did 30 g. but I think I chose to do this.
<br/>> >
<br/>> > Best of luck,
<br/>

I had a number of NK assays done which revealed high NK activity, but
<br/>during what ended up being a successful FET, my 50:1 was 15.3. Chris
<br/>described it as borderline. I was really concerned about flaring
<br/>upon implantation, & was told 1 IVIg several days before ET would be
<br/>sufficient protection. I ended up scheduling it 4 days before ET &
<br/>the cycle worked.
<br/>
<br/>My NKs were quite high with my + beta, so I immediately scheduled
<br/>another IVIg & ended up doing IVIg every 3 wks. until week 16 or
<br/>so.
<br/>

Hi there..I am also positive for abnormal NK cell activity, tested
<br/>through Millenova labs...they say that anything above 10 is
<br/>elevated. I have had 8 miscarriages, including 6 in a row from
<br/>August 2004 to September 2005, followed then by 9 months of BFNs and
<br/>infertility. Anyways, we could not afford IVIg...so we treated with
<br/>9 weeks of 4 different antibiotics. Then the first month trying
<br/>again we added 25 mg. Prednisolone starting at ovulation. We
<br/>conceived that first month! Baby Kassidy is now 2 weeks old! Good
<br/>luck and God bless you

Laura,
<br/>
<br/>I understand how scary it can be to have those higher NK numbers even
<br/>after having IVIg. It sounds like you are having and immune flare,
<br/>that is very typical for immune patients in the first trimester. It
<br/>will be very important to have an IVIg infusion every 3 weeks until
<br/>those NK numbers come down. I have 2 "Beer Babies" and with my
<br/>first one my NK's stayed high the whole pg, but he was fine. I just
<br/>had many IVIg infusions. The IVIg kind of acts like a sponge and it
<br/>keeps those NK cells busy so they leave the embryo alone.
<br/>
<br/>Another thing to consider is having LIT. I can't remmeber if Dr.
<br/>Coulam is a believer in it or not. You should ask to have your LAD
<br/>tested. My guess is that you have low blocking antibodies (low LAD)
<br/>and that is one reason your nk's are high. I believe you said you had
<br/>a m/c, that is a sign that your blocking antibodies would be low.
<br/>These antibodies tell your immune system to "turn off" when you are
<br/>pg. LIt can't be done in the US, you have to go to Mexico for it. I
<br/>have gone 3 times and while it sounds scary and crazy to go to Mexico
<br/>for a medical procedure, it is not very safe and professional. You
<br/>can read more about it in the files section or feel free to ask any
<br/>questions.
<br/>
<br/>Dexamethasone helps to slow the rate at which the nk's divide and
<br/>grow, but is not enough in and of itself. Also, most RE's recommend
<br/>you stop it by 10-11 weeks pg ,b/c it can interfer with the fetuses
<br/>developing sex organs.
<br/>
<br/>Best wishes to you,
<br/>
<br/>Danielle
<br/>
<br/>

<br/>another member suggested i post to you directly. i would sure
<br/>appreciate a response as soon as you have time. we are trying to talk
<br/>with our doctor today. thank you!
<br/>
<br/>I am currently 7 weeks pregnant. My last u/s was on 4/28 and showed a
<br/>normal size fetus with a strong heartbeat.
<br/>
<br/>However, I also have a sub-chorionic hemmorage/blood clot measuring
<br/>1.2cm x2.4cm. I have had 2 episodes of heavy cramping/bleeding, but
<br/>none in the past 7 days.
<br/>
<br/>i was on lovenox preconception but my RE discontinued it after the
<br/>blood clot was found and Dr. Trobough concers since, i have no other
<br/>identified thrombophilia issues.
<br/>
<br/>Chris suggested i go up to 20mg prednisone last week to help supress
<br/>immune response. Dr. Trobough says I should stay on that dose for now.
<br/>
<br/>I did immune testing last week (4/24) and all results were normal
<br/>(cytokines, ANA, APA, etc) except for NK CD56 killing activity:
<br/>
<br/>My 50:1 levels were 26.2 with high killing activity
<br/>
<br/>My 25:1 levels were 23
<br/>
<br/>The reproductive immunologist (Dr. Trobough at the Beer Center) is
<br/>recommending IVIG to bring down the NK cell killing activity and/or
<br/>address the blood clot.
<br/>
<br/>However, I have a one-time history of trying IVIG (2 or 3 pre-
<br/>conception doses)in 2005. At that time, after IVIG, my NK cell
<br/>numbers rose instead of fell (i'm not sure about activity). The
<br/>pregnancy test was negative then.
<br/>
<br/>i have asked Dr. Trobough if the fact that I had that negative
<br/>response in 2005 could be predictive of the type of response I may
<br/>have this time. He said it is hard to tell, probably not likely, but
<br/>could happen, and if so, we would discontinue the IVIG. My husband
<br/>and I (and my rheumatologist who would be prescribing IVIG) are
<br/>concerned that if the NKs were to flare after IVIG could it hurt the
<br/>baby? (the Dr. did say in 1 study, in a small number of patients
<br/>whose NKs did flare after IVIG, there was no higher m/c rate). I also
<br/>contacted Dr. Matzner, and he seemed to indicate that he would
<br/>recommend doing the IVIG. He said that in his experience, IVIG does
<br/>not bring down the numbers, that it works by a series of complex
<br/>processes(which is what chris at the Beer center basically said - it
<br/>can protect the pregnancy in several ways.)
<br/>
<br/>both doctors advise IVIG and say I am at greater risk of m/c with out
<br/>IVIG, yet the possible flare after my use of IVIG before still
<br/>concerns my husband and rheumatoloigist, since intuitively, wouldnt
<br/>higher NK activty (as a result of a flare after IVIG means more
<br/>potential harm? Or is the possiblity of flare somehow independent
<br/>from the use of IVIG?
<br/>
<br/>this is the first and only successful pregnancy (positive test,
<br/>heartbeat) i have ever had after years of IF and 3 IVFS (i am 46 and
<br/>this is a donor embryo). I love this baby and want to do what it
<br/>right, and feel such time pressure.
<br/>
<br/>I would be so grateful for your responses to these questions i
<br/>raised above and the following:
<br/>
<br/>is there anyone else here with a similar history (just high Nks) who
<br/>DID do IVIG and had them rise? what did they do? Dr. Trobough said if
<br/>they rose they would probably stop the IVIG and pursue higher doses
<br/>of steroid (i am on 20 mg of prednisone now.)yet Dr. Matzner seems to
<br/>say that he wouldn't necesarily stop IVIG, just use the numbers to
<br/>determine the amount of IVIG.
<br/>
<br/>my rheumatologist was concerned about the discrepancy between the
<br/>dose of 35 grams sent to him in the Beer center recommendation vs. 20
<br/>grams, which Dr. Trobough quoted over the phone. i had to speak up
<br/>and say that perhaps Chris chose the 35 gram dose b/c of my weight
<br/>(220 lbs.)Dr. Matzner will not comment on the specific dose as i am
<br/>not his patient -- all he said was the dose had to be high enough. i
<br/>wonder what is the right dose?
<br/>
<br/>Dr. Trobough seems nice and knowledgeable, although he certainly
<br/>doesn't have the experience of Dr. Beer. Dr. Matzner i respect too.
<br/>the reason i did the tests thru the Beer center, however, is that
<br/>their lab accepts my insurance, and Chris is so helpful.
<br/>
<br/>well, i would appreciate it if you could help me think through these
<br/>concerns and perhaps better understand.
<br/>
<br/>thank you for your time.
<br/>

Until now I have been mostly a very grateful observer of these posts but I am
<br/>feeling pretty discouraged right now and needing to reach out. I am almost 8
<br/>weeks and have had 3 IVIG treatments. My Cytokines are at 57.8! just awful, I
<br/>will go in Monday for another treatment but I am starting to feel like this is
<br/>not working and it is so hard to feel this way so early on. Has anyone heard of
<br/>levels this high coming down with IVIG and prednisone (30mg a day) Has anyone
<br/>had levels this high? Any support would be much appreciated!
<br/>>
<br/>> Melanie
<br/>> *losses at 17,13,18wks, currently with Dr Kwak on full immune protocol
<br/>>
<br/>