does anybody have any experiences with reproductive immunology? is it legit?

[Anonymous]

TTC for 4 years. 6 miscarriages, 1 failed IVF transfer. 41. Egg looked good and fertilization went well but didn't take. Have factor 2 and don't process folate correctly but both treatable but still can't stay pregnant. had all the testing but nobody has answers. latest research into multiple miscarriages says maybe immunology? anybody have any experiences: positive or negative? any in the DC area? thanks.

[Anonymous]

I feel your pain, OP. How old were you when you started trying? Having gone through 3 IUIs and 4 IVFs and a full immunology workup, I still can't tell you whether or not I believe in the immunology side or not. DH and I had the full immunology panel run (facilitated by Dr. Abbasi at CFA--the bloodwork was sent to be tested elsewhere) and we had an odd anomaly that the people who believe in reproductive immunology would say was the cause of my failing to get pregnant. However, then we did our last IVF at CCRM and had the embryonic genetic testing done and all of my embryos---which had looked perfectly healthy---were genetically abnormal. So to this day I don't know---was I just too old when we started and all of my eggs were defective from Day 1---or did our immunological abnormality mean that even in the rare case that I had a healthy fertilized egg---my body was still going to reject it. I do know that the one time I was successful in getting an embryo to implant, I had done intralipid therapy (one of the treatments in reproductive immunology) during the IVF process. (I still miscarried, but that was the farthest I'd gotten). Were I to do it over again, I would have gone to CCRM sooner---I got more embryos there and they have one of the most sophisticated genetic screening programs. Hope at least some of this information helps. Good luck to you.

[Anonymous]

There's a similar post in TTC now. Check it out.

[Anonymous]

6:55 again - Just wanted to encourage you to think about doing PGD before you move on to immune theory, if you decide to go that route.

So, I'm 43 now, but at 42 I'd had eight miscarriages (starting at 37). No known cause. I got pregnant every month we tried without assistance. Each time - miscarriage. We finally did a round of IVF with a technique called preimplantation genetic diagnosis. PGD is where the doctors actually look at the embyro's DNA to determine if they are good or not instead of what they normally do, which is just look at them and give them a grade. In our case, using the standard eyeball test our embryo's looked great - all top grade. In fact, all of our embryos made it all the way to day 5. We didn't lose one! But the PGD showed that all of our embyros were positive for multiple genetic disorders that were totally incompatible with life.

The lesson I learned from this is that REs do us a great disservice when they tell us our embryos are "top grade" or whatever. You don't know if you have good embyros until you actually test their DNA. All you can know from the eyeball test are which ones are totally falling apart and which ones aren't. Genetically abnormal embyros can look perfectly fine though. So when the RE tells you your embryos look fine or are "top grade," all he or she is saying is that they are not falling apart. That does not mean they are fine and it certainly does not mean they are good enough to result in a healthy baby. Yet, from what I read on this board, this is how a lot of women are interpreting these statements.

For my part, although the PGD cost us an extra $5,000, it was totally worth it. It finally gave us the true cause of our infertility and it made me feel a lot more confident about moving ahead with choices that could and would give us a family. Until that point I was terribly conflicted, primarily about immune treatment. I really did wonder if I should pursue it. But when I saw those DNA results I was able to finally put all that to rest because we had identified a cause. I strongly urge you to consider PGD before you move on to any other treatments because at least it will allow you to know FOR SURE if your embryos are or are not the cause of your infertility.

Good luck.

[Anonymous]

I tend to agree with pp. I have not done PGD because of the cost but ihave the same issues. Beautiful embryos, textbook ivf cycles.... fells like pregnant during 2 ww and the BFN. Sometimes we are dealt a crappy hand and for some of us, that means are eggs are just bad. It isn't age or health or weight.... there may be something to immune issues but if your emryos are beautiful but defective it won't matter at all.

[Anonymous]

I was successful on an immune protocol, but I'm also in my early 30s and my miscarriages started earlier. We also did not need IVF to get pregnant. I don't think there is anything wrong in doing the PGD route first before pursuing immune treatment. Keep in mind though that some immune issues impact egg quality. High TNF can cause oxidative damage and anti-ovarian antibodies can also damage the egg. Some ladies on the immune boards are on G-CSF during stims to help with egg quality and are having success with it.

So, in my mind it's legit, but we also know that's our issue and it's not an age or egg quality issue. There is really no way to know unless you have the testing done.

[Anonymous]

I do believe that Reproductive Immunology is legit. I am seeing Dr. Braverman in NY. I asked him why so few RE's don't look at immunology issues and he said it wasn't because they really aren't that informed in that area. RI is fairly new and most Dr.s who go into immunology are looking for infectious disease cures rather than dealing with infertility. There just aren't lots of docs out there who are informed.

I can't tell you if it worked yet. I have my FET tomorrow. I did my intralipid treatment last week. I tested high for NKcells and cytokines. He put me on supplements back in November and my cytokines at my most recent testing were completely normal. I still needed the intralipids because my NK were high. We will see if it works.

[Anonymous]

Just be wary of the assumption that there is only ONE answer to your fertility problems. The fact that you have bad eggs doesn't necessarily mean you don't also have immune problems and vice versa. I've seen people dismiss immunology because treatment didn't work for them, only to discover later that their eggs were bad. Others move on to DE and can't understand why they still aren't succeeding. If only fertility issues were always that simple. I had bad eggs, serious immune issues AND a beta-3 integrin problem.

OP, to answer your question, yes I have experience with it and yes, it's legit. If I were you, I would get tested. You could still do PGD/CGH. The two solutions aren't mutually exclusive.

[Anonymous]

What's missing from this discussion is cost of testing and treatment. Most people cannot afford to do it all. Yes some on this baord have done so, but its not possible for the average middle class family to explore multiple opinions, multiple cycles, medications, testing, travel....

[Anonymous]

FYI, immune testing/treatment doesn't have to be expensive. If you use the right lab, BC/BS will cover most of it. Steroids are pretty much always covered by insurance. Intralipids aren't generally covered but they're pretty cheap. Many out of State clinics take insurance.

[Anonymous]

I second the price thing. I consulted with dr coulam and it is $250 just to talk to her on the phone (AFTER you have paid $350 for the initial phone consult). She codes these phone consults in a way that may blue cross will not cover them. Her labwork is also not cheap and is a pay up front thing, then pray that BC reimburses you. For me, this was my best bet - I couldn't travel to Kwak Kim and chose not to work with Braverman after hearing others' experiences with him.

[Anonymous]

I agree that there may be multiple factors at issue for anyone's treatment and the immunology stuff may be just one in a series of issues. I have low AMH and my husband has MF issues. We've had three failed IVFs. The last cycle included an immunology protocol (with intralipids, lovenox and dexamethasone), but still resulted in a BFN. We didn't go with the full immunology protocol that the Beer Center recommnded (which included LIT in Mexico) because we weren't comfortable with LIT. However, our doctor (Abbasi) thinks we may have egg and sperm quality issues and that the immunology stuff is secondary - our embryoes made it to a day 5 transfer but their development was slow .

For this next round we are doing a different stim protocol but still using the immunology protocol (using IVIG this time). We've been taking supplements and making some other dietary changes to try and improve the quality issue. But we figure that if the immunology protocol doesn't hurt and could potentially help, we might as well do that too.

We're sort of at the kitchen sink approach now.

Whatever you decide to do, best of luck.

[Anonymous]

I don't have faith in the embryo grading crap the clinics do. My friend who is now pregnant did testing at CCM, and of three embryos, it was the best-looking one that was abnormal. I've seen that on forums many times--gorgeous embryos that are abnormal, bad ones that are normal. My friend has a niece that they joke is a "C-", because the IVF during which she conceived, there was just one embryo, it was C-, but it took. I don't think they know as much as they say they do about embryos--how can they, when the vast majority of successful pregnancies result from embryos they never see and thus could never grade. If you haven't had genetic testing, as one doctor told me, "it's just a beauty contest" but really doesn't predict success.

I've been dealing with fertility doctors for two years. Very few are highly knowledgeable, from my experience. They follow the protocols they know, with a few exceptions such as CCRM and Cornell, where they truly tailor the protocols and follow you closely. I don't think many in DC are seeking better information or solutions either--they just make money on volume, and wait for the few experts in the country to come up with new methods/techniques/correlations.

To answer OP's questions, absolutely I think immunology is worth a shot--your system has to be working synergistically to get pregnant so it makes sense that immune issues would intervene.

My only qualification would be that CCRM does not believe in immunology issues (I think), and has the highest success rates in the country.

I think, though, with the expense of IVF, it's best to leave no stone unturned. I did the immunology testing after my miscarriage because no way I was going to go through it all again if there was any issue--all came up clear though so with me it is my eggs.

[Anonymous]

For those who are pursuing testing, try to have your labwork run at Rosalind Franklin University in Chicago. They are a preferred provider for BC/BS and have covered all my testing 100% under the Federal Employee Program.

[Anonymous]

OP, I'm a bit like you. Had 5 m/cs, all before age of 35, and have MTHFR variation. Also was lucky enough to have one healthy pregnancy in there, so I have that to be thankful for. WHen I asked my OB if I should go down the immunology path, he strongly advised against it, and actually said it was a fraud and gave women false hope. This guy has decades of experience and isn't adverse to other specialists; we've talked about PGD as my next option.

Anyhow, if you're thinking about where the best value for your budget it, my dr's rec was PGD over immunology.