Dr. Karine Chung
Dr. Chung is a relatively new RE at USC Fertility, one of the oldest and most well-respected, private fertility centers in the country. So I emailed Dr. Chung to get her opinion on all of Dr. Stricker’s treatments and she called me back a few days later.
She said she does not believe at all in the whole autoimmune/pregnancy thing offered by AEB. Says there is no proof any of it does anything at all. I kind of figured that would be her opinion, but what I really wanted to know from her was, assuming I went through with all of it anyway, what should I be most concerned about….here are her thoughts:
IVIg – She is most concerned with IVIg, stating that there are no studies on long-term effects of the treatment. Says it hasn’t been around long enough. One article I found said it had been around for 10 years, which I agree is not long enough for a “long-term” study. She also said there is a small risk of allergic reaction, which I knew about.
Humira – She doesn’t know what that is. She asked what it was for and I told her it was to treat the high cytokine level. She sort of scoffed like that was ridiculous – would not recommend because hasn’t heard of it.
Lovenox – She would prescribe the same thing considering my positive APA test. Although I tested a few months earlier for APA and the screening test came back negative so they did not run any of the specific tests. She would like me to re-test and see what the result is. Even with a negative, she would treat with Lovenox because of the one positive, but would “feel better” about it if the 2nd test came back positive. Says APA is definitely a cause of recurrent pregnancy loss. Thinks this might be my problem.
Aspirin – same as Lovenox, above.
Dexamethasone – Concerned about long-term use. I told her the treatment would likely end at 10 weeks and then she was not concerned with the treatment because of the short-term use of it. The drug is a Class C (Studies in animals have shown an adverse effect but no studies have been done on pregnant women or no animal studies have been done and there are no adequate studies in pregnant women). But this article says it is a Class D if used in the first trimester (Category D: Studies have shown that there is a risk to the fetus). So…huh?
Folgard – Agreed with treatment considering my homozygous positive for MTHFR. Says incidence of hetero MTHFR is very common and so she would not treat me if I was hetero. But homo is worth treating and so she would agree with the Folgard to increase Folic Acid.
Synthroid – Agreed with treatment.
LIT – We didn’t discuss this specifically. I think because her initial reaction was so strong against reproductive immunology in general, I didn’t bring it up. Although I’m sure she would have the same opinion as the IVIg.
IVF – Does not recommend. She said it is not as easy as Dr. Stricker said, where you can just look at the eggs and see which ones are good. There is a test (Pre-implantation Genetic Diagnosis, or PGD) that a couple years ago the fertility world thought would be the cure for chromosomal miscarriages, but she said that testing since has indicated it is not as helpful as they thought. They test the embryo at day 3 and there are incidences of false “bads” and false “goods.” Also, sometimes an embryo has tested bad on day 3 but then corrects itself by day 5 if left alone. She says IVF is really for people who cannot get pregnant after 6 months of trying, which is not our problem. She told me to save the $10k and try the old fashioned way.
She said she would still treat me if I decided to do everything.
Recap:
- IVIg – no (very concerned)
- Humira – no (because doesn’t know what it is)
- IVF – no (because it won’t help and is costly)
- Dexamethasone – says it ok to take but doesn’t think it will help
- Folgard – yes
- Synthroid – yes
- Lovenox – yes
- aspirin – yes
- LIT – forgot to ask
Message Board
I posted my question about long term risks for IVIg on the message board but did not receive any substantive responses. Also, there are so many differing opinions within the group that it makes relying on anecdotal evidence very difficult. For instance, one woman took Humira to lower her cytokines and it increased them so she skipped it the next time and got pregnant. Another woman tried everything except Humira and kept miscarrying, she was sure it was because she hadn’t done the Humira. My SIL couldn’t take Humira because of the TB test and she had a healthy boy. But why would Dr. Stricker prescribe Humira if I didn’t need it? Oh, so confusing.
Dr. Andrea Stein
Dr. Stein is a fantastic Dr. who no longer practices OB / RE because of a wrist injury that prevents her from doing surgery. I went to her for treatment for horrible cramps and she was the only doctor in 25 years who was able to help me. She was my Gyn up until the first pregnancy and then I started seeing Dr. D. as my OB. But I still defer to her for second opinions because she is awesome.
Her short opinion via email is that genetic problems cause most miscarriages. She agrees that I might have some other underlying problems but thinks that we should talk with a couple of the exceptional IVF doctors with copies of my labs in hand. She cautioned that there are dangers to some of the treatments, adding that she has actually witnessed them. She was not more specific, so we have decided to make an appointment to see her to learn exactly what she’s referring to. We see her next Friday.
Dr. Hal Danzer
About 15 or so years ago I was an egg donor. My doctor for the retrieval was Dr. Danzer who is one of the most respected fertility specialists in Los Angeles. We made an appointment to see Dr. Danzer next Friday morning (just before our Dr. Stein appt.). He takes my insurance, yay! [UPDATE: but the insurance doesn’t pay for squat….still waiting for a bill of ~$500.00]
Side note about the effects of miscarriages
The first time I got pregnant I assumed everything would be fine. I had NO IDEA that there was a possibility of a miscarriage. My how things have changed…the other day we were watching Baby Mama and at the end (*spoiler alert*) the doctor announces she’s pregnant. My first thought was not “oh, that’s so exciting!” it was “well that doesn’t mean much.” I’ve turned into such a pessimist…I think that’s a bad thing. I need to find a way to be optimistic. I think it’s crucial. I want to fast-forward this blog to the final entry–the picture of the healthy baby/babies with the title “Finally Here!” If I just knew that was what was at then end of this for us it would be so much easier to endure all the questions, decisions, medications, procedures. If anyone has any ideas…..