Anyone with Immune Issues in Pregnancy Please Help!


#1

Hi everyone – I am new to this board but I have read many of the posts and have taken a lot of comfort from the boards the last four days. Just a quick background b/c I am looking for advice / experience / help from the knowledgable women here. I am 39 – froze my eggs when I was 36 at CCRM to preserve my fertility. Never met “the one” so decided to move forward as a single mom by choice. I always joked with my Dr. at CCRM, “I don’t have a fertility problem, I have a boyfriend problem.” Turns out the joke was on me – in April I transferred two CCS tested normal embryos and they believe both implanted based on my high hcg levels. Unfortunately, I had a miscarriage on Weds and lost them both. Because the embies has been genetically tested and were great, the probability I would lose both is sub <1%, so now they are focused on me and my body. I had a full uterues check pre-implantation and that was really good, so Dr. thinks my body is rejecting the embies and I may have an auto-immune defect or my PCOS is interferring somehow with my pregnancy.

Here are my questions – and please any / all responses are appreciated. 1) Anyone else face this auto-immune issue? 2) How did they treat it? What did they recommend? 3) Where you able to have a baby once they figured out what was wrong and how to treat it? 4) Any advice you can give me on moving forward with this?

I am so sad and scared – I feel like God doesn’t want this for me. Please help if you can.

TTBAMIM


#2

Hello! I am so sorry for your loss, i know it’s devistating. Please don’t lose hope though! I have autoimmune issues and after being treated with intralipids I was able to have my baby girl! I had one infusion prior to ET and one after positive beta. The infusion was just a regular IV hooked up to the intralipids for 2-3 hrs. Didn’t feel a thing. Good luck to you!


#3

Tryingtobeamommyinma- I am so sorry and can totally relate to your story. I joked the same thing- that I don’t really have infertility issues, but its really just that we don’t have a man! Its devastating to find out that things are not working the way you imagined. As if life isn’t hard enough!

Mammainwaiting- how did you find out about your NK cells? Did they do a bloodtest? I am curious about the diagnosis because I just had my 4th failed FET, and everything has been perfect each time, but no implantation. When I meet with my dr, I want to bring up immunologic implantation disorder, but wanted to know if there is something they can do now before my period to diagnose it…


#4

Hi CTdoglvrs. Not all RE’s test for or believe in NK cells being issues but I had everything looking great and only until we treated the NK cells did we have success. It is just a bllod test but I think only about 5 labs in the US process it so my sample was shipped out to Chicago I think. You can find more info about immune issues on haveababy.com. Dr. Sher has lots of info. Good luck!


#5

Hi ladies,
I have had 5 failed IUI’s as well as 2 IVF’s, one of which resulted in a positive pregnancy but then a mc at 9.5 weeks. I was then referred to a Reproductive Immunologist (REI). They are a sub-specialty of the regular RE. A REI conducts extensive diagnostics to find out why implantations fail, mc happen and gives a personal diagnosis and treatment plan. There are only 12 REI’s in the United States. I am fortunate enough to live in the Chicago area and have a REI living an hour and a half from my house.

When we were referred to her, she takes about 3-4 weeks to review the entire file from the RE with your history and previous treatments. Once they are ready to see you, they schedule the initial appt. which took 4 hours. At this appt. you get an extensive ultrasound (1.5 hrs total) at which they measure size of uterus, ovaries, follicles, etc. as well as measure veins, blood flow patterns in the 3 different zones and determine if you have implantation issues. After the ultrasound you get an extensive medical history review and physical with one of their doctors. Once that is complete, they took 21 viles of blood from me. The tests that are ran in their panel include: Antiphospholipid antibody tests (APA), ANA screen, Antibodies to nuclear components,Anti-thyroid tests (ATA), NK Assay, TH1/TH2 Cytokine, Thrombophilia, and other evaluations (like Vitamin D, B, C, etc. levels). Once all tests are done, the REI sits down and meets with you. At the initial meeting, she can only discuss what she knows from the RE file and ultrasound. We had to come back 4 weeks later to get the actual results, diagnosis and treatment plan.

However, I was floored when we came back to see her 4 weeks later and she found a lot more out about whats going on inside of me then the RE ever would. And she told us that as well. RE’s don’t test for a lot of the things that she tests for, so it’s a good thing we came to see her. I went from “unexplained” to having an actual diagnosis. I know that I have issues with NK, Thyroid, Blood flow and Vitamin D3. Something I would have never known before. But the best part is, that once you see an REI, they CO-MANAGE you until you hold that baby in your arms. My REI told me that she will co-manage and wants to be copied on everything the RE does from here on out, any blood test, ultrasound, etc. She will make recommendations and adjustments as needed to the RE based on my personal diagnosis. I am so glad that we went to see an REI because I feel we are getting closer and closer to completing this puzzle and finally get pregnant and have a baby.

What I wanted to say with this post is to talk to your RE and get a recommendation to an REI. The one problem with REI’s is that you dont just call and make an appointment. Since there are only 12 of them nationawide, people from all over the country fly to see them, even internationally. You have to be referred to an REI by your RE, because the REI requires a copy of your entire RE file and will consult with the RE before your appt. And bring a lot of time with you, since they dont schedule the initial appt. quick. We were referred to one in mid January, but didnt have the appt. until March.

If anyone has any questions, feel free to PM me. :slight_smile:


#6

Miscarriages, Immune Issues, IVIG, now Pregnant

Hi ladies,

I thought I would put in my two cents worth and hope it helps someone. I started trying to conceive in December 2011 and we were immediately successful. Miscarried at 8 weeks after a 12 hour flu, however. I was 37 at the time so we decided to seek an RE and get all the levels checked to be sure. Everything was fine. FSH 4. However, they gave me a scare about eggs aging blah blah blah and talked me into my first round of IVF. That failed. Despite perfect embryos. Again, flu-like symptoms around implantation time and then it was over. I hated my RE at Shady Grove so I switched to someone more open and who treated at me as a person not a dollar sign, like my old RE. I did another round of IVF. This time I got a BFP, then the flu, then it was over. its on the books as a chemical pregnancy. By this point I knew something was not right. I am super tuned into my body (can even tell you which ovary released the egg each month). I dove into medical journals and articles and read everything I could about fertility and infertility. I told my RE I wanted Immune testing before moving forward. This was January 2013. She said it would take about 4 months. I was willing to lose that time as my fertility insurance was running out and I didn’t want to waste another dime on IVF. Sure enough, I had high NK cells. A uterine biopsy also showed high NK cell activity in my uterus (painful, painful test - but worth it). While I would have just done the Immune treatment and not another IVF cycle and still probably gotten pregnant, IVIG is so expensive that I opted for my third round of IVF with IVIG treatment (to freeze eggs).

Treatment:

I did one IVIG treatment one week before Embryo transfer. After embryo transfer I started one daily baby aspirin, one Dexamethasone (to limit inflammation in the body which triggers NK cell activity), one Estradiol twice a day, and 22 vitamins from a list my RE gave me (20 of which I had already been taking since 2011). I am also on Progesterone inserts 3 times a day.

I am now pregnant and on my second month. I have done two IVIG treatments thus far and will continue those every two weeks until after the first trimester.

We need to remember ladies that WE are the experts of our bodies. If we are not aware of what our bodies are telling us, how can we expect someone else to be? Doctors work for US. And while we assume that they will know what is best for us, the truth is that IVF is a VERY lucrative business. They don’t tell you that the odds of successful IVF treatment go down after the 3rd failed IVF. They may tell you that at your age, you should consider donor egg - even if they have diagnosed you with “unexplained” infertility. Why? Because donor egg is lucrative. THERE IS NO SUCH THING AS UNEXPLAINED INFERTILITY GIRLS! So, do your research and be well informed of your options. Then ask questions or even demand that certain testing be done. Don’t just opt for another IVF failure without knowing that every possible issue that could keep you from getting pregnant is explored. Know your insurance coverage and make sure what can be covered under your regular plan is coded correctly so that if you have fertility coverage, immune testing doesn’t eat up that dollar amount.

Here is a link to a very good article that explains the whole immune issue and fertility/miscarriage. It helped me understand how/why my body was behaving badly. my husband and I did not get tested for the soluble HLA-G protein. That wasn’t important to us. We just wanted to take care of the issue. It didn’t matter to us which one of us had faulty “wiring” :slight_smile:

Here is a little piece that helps understand how this works. Its from this article: Immunology may be key to pregnancy loss (updated) by Carolyn Coulam and Nancy Hemenway

Problems with embryo signaling:

Antigens on the surface of the invading embryo or secreted by the embryo must signal the maternal immune cells that it is “self” rather than “nonself” or foreign so that the mother wont mount an immune response to reject the embryo. Soluble HLA G is an antigen secreted by the embryo that signals the mother’s immune cells that it is “self” and should not be rejected. Abnormalities in HLA G signaling as a cause of recurrent pregnancy loss can be detected by looking at HLA G gene in the mother and the father or by measuring soluble HLA G protein in culture media of in vitro fertilized embryos. The most frequent HLA G gene mutation found in couples experiencing recurrent miscarriage is HLA G-725C/G.

Problems with Maternal Immune Response:

When the mother’s immune system cannot or does not respond appropriately to embryonic signals, pregnancy loss can occur. How can we tell if the maternal immune cells cannot respond appropriately? There are blood tests that can identify inappropriately functioning immune cells:
· NK cells can be tested with the Reproductive Immunophenotype (RIP) and the NK activation (NKa) assays.
· T cells can be assessed by measuring the activated RIP and regulatory T cells (CD4+25+). In addition T cell function has been associated with the presence of Anti-thyroid Antibodies as well as the presence of circulating embryotoxins in the Embryotoxicity Assay (ETA).
· B cells function is evaluated by their production of autoantibodies including antiphospholipid antibodies, antinuclear antibodies, antithyroid antibodies and lupus-like anticoagulant.

Hope this helps someone.