Immune issues?

[jjsanner]

Has anyone here been diagnosed with immune issues? If so, what tests were run, what was the treatment and, finally, did it work?

We have a 2 1/2 y.o DS who was conceived very easily, but have been struggling with TTC for #2. I have been seeing an RE for about a year, all tests come back fine and we are "unexplained". I have suffered two early miscarriages, and I would like to explore all options to ensure that I do not experience another. Thanks in advance.

Jen

[Scooter]

There was a really good thread about this over on the old boards, but their search function is so messed up I don't know how you'd find it. :( It did list in detail each immune test--I believe BTB had posted that list. You may want to PM her to see if she still has them written down.

There are a couple threads that have talked about this, I think the main two are these:
unexplained infertility (http://www.constantchatter.com/forum/showthread.php?t=24633) (but I think you already posted in that one)
IVIg- anyone know about it? (http://www.constantchatter.com/forum/showthread.php?t=3480)
That last one has a link to the RI Yahoo group (mostly Dr Beer's patients). There is a TON of info on that site, so that is a really great starting place for anyone looking into this. HTH, and hope you are able to get some answers.

[Soulmate]

I was dx with thyroid antibodies and had to ask for that test, along with lupus antibodies, from my RE since he had no idea why one would test for it. He had no idea how to treat it. I learned what I did about immune issues when I was TTC on WC and read through the thread scooter mentioned below. There are tons of antibodies along with protein deficiencies that cause m/c's. I looked at the Yahoo group scooter mentioned and it drove me insane! Dr. Beer is extremely controversial and so is a lot of his treatments. I saw what was recommended and I was very overwhelmed at the cost as well as the treatments. Though I know BTB successfully carried to term using those treatments (though not through Dr. Beer I believe). But if you have serious immune issues (mostly elevated Natural Killer Cells and good luck getting that test run!) then those treatments might be what works. But someone else here has NKCs and is getting the treatment for it and is still TTC. Hopefully she'll pop by.

For me, I took baby aspirin and Folgard everyday and did acupuncture. Baby aspirin is the first line treatment for antibodies and Folgard is OTC (only at Walgreens though but you can order it on their website) and is basically a super amped up B Complex vitamin. Folgard treats protein deficencies because they make it hard for the body to absorb folic acid and other b vitamins so you need to take mega-doses of it. I was never diagnosed with a protein deficiency but I refused to go through another m/c again and it wouldn't be harmful. But ultimately I believe the acupuncture was what really made DS stick since I think a lot of my fertilized eggs were failing on implantation (looking at my charts), I had been taking baby aspirin for a while, and I didn't start Folgard until after my BFP.

[Scooter]

ITA with Soulmate. It was so hard trying to figure out what I believed about Dr Beer's treatments. It appeared that since I had no other diagnosable immune problem, my most likely diagnosis through him would have been NKCs. The treatment is IVIg, which is very expensive and not covered by insurance. (For this use anyway. It is covered for non-TTC reasons.)

The trouble is, people try every standard treatment and go to his office at their most desparate. Most of the time he would say, "I can treat you. I have an answer for you about why you're not getting pregnant/carrying to term." And what couple, after going through the heartbreak of unsuccessful treatment of unexplained infertility & or RPL is NOT going to feel hopeful and want to believe him? And then his testing & treatments cost thousands (tens of thousands). He said he had a high success rate, but other doctors weren't always able to replicate that. My own RE told me that it's difficult because there is only so much empirical data supporting his claims, and that many well-respected doctors have gone into the field of RI, staked everything on their research, had it come to nothing, and their careers were ruined. It's all a gamble.

However, the three treatments for general or undiagnosed immunological issues that DO have empirical support are these:


For me, I took baby aspirin and Folgard everyday and did acupuncture.
I did all three of these, too. After 2 months of this exact combo, I got pregnant with a sticky baby. :)

[jjsanner]

Thanks so much for that, ladies. I have actually been taking baby aspirin for a few weeks (self diagnosed, of course). But I will run out today and get the Folgard. And, I have been thinking of starting acupuncture as well. I'm gonna ask my RE at our appointment Tuesday for a referral. I'm not sure of her stance on immune issues and related testing, so that will be discussed also.

There is actually a pretty good thread over at www.fertilethoughts.com dealing with immune issues, but the terminology makes my head spin. I was just wondering if any women here had ever gotten the full immune work-up. In our case, I am concerend about clotting disorders....I know some have done herapin injections. Anyone have any knowledge on this specifically?

[Phen]

I had the full panel run in 2003--it just involved a major blood draw (17 vials, IIRC) and waiting about 5 weeks for the results to come in. It turned out that I had antiphospholipid antibodies and had to do baby aspirin and twice daily heparin shots during my pregnancy.

here's a thread for clotting disorders/heparin users (http://www.constantchatter.com/forum/showthread.php?t=8114)

~ Phen

[Scooter]

I had a panel run, but it wasn't the full thing. According to my clinic, the standard practice is to check for specific ones (I think there were about 5 that they looked for?) and then go from there. Some of them, like what Phen was diagnosed with, have a clear treatment (heparin, lovenox, etc).

What my RE told me is that many of them have no real treatments that are approved. When I came up ok or just slightly elevated on them but still considered negative, I asked about going on heparin as a precaution. My RE said that heparin, lovenox etc have definite risks, even risk of death, and should only be used in cases where you *know* they're necessary. She was less concerned about running the full panel and more concerned about just focusing on these specific usual tests, including several clotting issues. And the good thing is those were covered by insurance. Those may be what you & your Dr can look into preliminarily. She said it's definitely a good starting point, and a more complete panel can always be run later if you have specific concerns. In my case the concern was more general. We were thinking I may be having repeat early miscarriages (body fighting off the embryos at implantation), but then again that is going into the NKC, RI area of unknowns. :( We may never know.

[jeggink]

Something else you may want to ask about is getting a genetic analysis done for DH and yourself. I am in your situation as well, easy DS, 2 m/c and having problems now. We found something genetically wrong with this baby and it may link back to DH and I. It is called a Balanced Translocation (baby has unbalanced translocation) and it can cause m/c's as the baby may not be genetically right. About 1 in 500 will have this. A lot of the time insurance wont' cover a genetic test till after the 3rd m/c so you may want to check on that. I had the immune panels run on me and they were fine.

I know I started a thread on multiple miscarriages which has some more detailed info and if you do a search for Heparin you may get some more results.

Hope that helps a bit and gives you a different line of thought.

ETA - I bumped 2 threads for you jjsanner
Clotting / Heparin Thread (http://www.constantchatter.com/forum/showthread.php?t=8114)
Multiple M/C thread (http://www.constantchatter.com/forum/showthread.php?t=21466)

[Heather719]

After battling PCOS and dealing with 2 early miscarriages I was found to be positive for ANA and have a homogeneous MTHFR mutation. I was immediately taken off birth control (which I was on to manage my irregular cycles after my 2nd miscarriage), and put on baby asprin as well as elevated doses of Folic Acid and B6 and B12. I also started going to an acupunturist.

Before continuing to TTC, we saw and RE and he put me on heparin during my 2ww. After 2 cycles of TTC with fertility drugs, I miscarried again even on the heparin. So, the next time I became pregnant, I switched over to Lovenox and I did do the IVIg treatements. I had 3 IVIg treatments- one at 5 weeks, another at 9 weeks and another at 13 weeks. I can't, for certain, say that the Lovenox or the IVIg or the combo of both were the magic bullet- but I now have a happy, healthy 6 month old! :)

If you'd like more info, please feel free to PM me!

Best of luck,
Heather

[karlatta]

I was just diagnosed (today) with MTHFR. The nurse who called with the information couldn't answer my questions, so I'm waiting on a call back from my RE to get more specific information.

My biggest concern is that I'm one week into a 2ww following an IVF cycle. The only treatment my nurse recommended was increased folic acid. I'm wondering if I should also be on baby aspirin, heparin, or something else. What sorts of questions should I be asking my doctor?

Thanks!

[Soulmate]

Karlatta You can get Folgard over the counter at Walgreens (ask the pharmacy counter) or Walgreens.com. But you can also ask your dr. for a prescription if you do not have a Walgreens nearby. I was not dx with the MTHFR (FYI - aka the mother f@#ker mutation ;) ) but started Folgard around 16DPO. I guess that doesn't help much since I don't know if I had it or not does it? ;) Maybe Heather can help.

[Phen]

Karlatta, if it helps to ease your mind any, I wasn't allowed to start heparin shots until after I got a BFP and after I had an initial beta (and PTT) drawn, which was the evening of 12dpo. Prior to that, I was only on a baby aspirin to "support" what turned out to be two babies. Hope you get an answer from your RE sooner than soon!

~ phen

[karlatta]

Phen - That helps ease my mind A TON. Thanks so much. Hopefully I'll hear from my RE today. My nurse was a little less than helpful yesterday afternoon when she called. :( I am a little concerned because my beta isn't scheduled until 19dpo (because of Thanksgiving), and I don't want to go too long if I need to start heparin or something.

Soulmate - They're supposedly calling in a prescription for me for the Folgard, and I'll start it today. I am 9dpo.

[Heather719]

karlatta- To further put your mind at ease, I didn't find out I was pregnant with my son until I was 5w2d along. He was a surprise baby as we were taking a break from actively TTC with fertility drugs after my 3rd miscarriage. So while I was taking the increated folic acid, b6 & b12, I didn't start taking my Lovenox shots until I found out I was pregnant. It was terrifying thinking I started the shot too late given my history, but it all worked out!

Best of luck!