Thursday, October 29, 2009

Regroup with the miscarriage wizard


Today was the follow-up appointment with the reproductive immunologist, a.k.a., the miscarriage wizard. I stand by my first impressions from the last appointment - this guy is a nutter. Will has taken to calling him the "mad scientist." Throughout the meeting with the doctor, it was hard to get a word in edgewise, he couldn't seem to remember who I was and had to review my chart in front of me to remind himself of my history, he kept mixing up Will's and my professions, etc. Sigh. He may be brilliant, but he does a poor job of making good impressions. Both of us almost felt sorry for him.

As for the test results - there were some abnormalities. Not surprising, I suppose. If you take enough tests, you're bound to find something, aren't you? The wizard was not good at all at explaining the significance of them in any kind of convincing way so Will and I will be doing the research to educate ourselves. But basically, it turns out that the following immunological tests are "not normal":

antiovarian antibodies
TH1:TH2 cytokine ratio
natural killer cell assay
leukocyte antibodies
DQ Alpha antigen

The gist of it is that these immunological issues can supposedly impact implantation negatively and also lead to clotting issues (although all my thrombophilia indicators are normal, go figure). So the wizard recommended baby aspirin and lovenox + either prednisone, intralipids, Humira, or IVIG. He was really pushing IVIG specifically, but as I've said, he wasn't exactly instilling confidence in Will or me. (After the appointment, Will turned to me and said rhetorically, "Would you ever let him touch your baby if you had one?" Ah, no.) Honestly, I'm not sure if I'm willing to do IVIG. Apparently, you need 2-3 treatments (per pregnancy) at $3,700 a treatment - the first one of which is before you know if you're pregnant or not. And the treatment is collected blood products, which is also not thrilling. Combine all that with the fact that this is a very controversial treatment, and, well, I'm just not sure I'm signing up for it.

Needless to say, we'll be reviewing the literature.

Hmmm....so remember how I was wondering if going to this doctor might be opening a can of worms? Well, consider it opened. We'll see where we go from here.

To keep things stimulating, it looks like we ARE headed to Denver next week for the one-day testing on Tuesday. Flight booked, hotel reserved, rental car rented. We'll see what they have to add to the mix. This should be interesting...

Mo
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29 comments:

Sprogblogger said...

Actually, I think that's really interesting stuff. Glad you're going to your Denver appointment, but it doesn't actually sound to me like this one was a waste of time. I've been checking into stuff like crazy, since my doc recommended the Wizard, and while I still haven't come to any firm conclusions, I have learned that there has never been a case where IVIg infected someone. And I'm currently following a couple of blogs by women who had multiple losses, and for whom using IVIg has resulted in the birth of an actual, live baby.

I have learned that the guy with the same name as the Wizard is a big fan of intralipids (which is enough to make me want to steer clear) except for whatever reason, they do seem to do the same thing. Whatever that is.

Prednisone is an evil nasty drug, but since my last loss coincided with the week I stopped taking it, I'll be on it for a lot longer this time around. (Assuming there is a this time around.)

Humira? Have to look into it.

Might be an opened can of worms (love the pic, btw) but it's an interesting one, at least. And I don't know about you, but having something to address something to do differently next time? That sounds awfully damned comforting.

Can't wait to hear about Denver.

Barefoot said...

There is defintiely something to be said for bedside manner! Sorry this guy reconfirmed your first impressions.

I am so curious to hear how next week goes in Denver, though!

Anonymous said...

Although that doctor sounds like a total weirdo, he may be onto something. After my second miscarriage, I found this book in Barnes and Noble when I was feeling pretty low.

It discusses the different known causes of miscarriage and discusses the doctor's success stories.

A number of women were treated with IVIG and they had successful pregnancies, for the first time. I agree that it sounds a bit scary because it reminds me of a blood transfusion. However, it might be worth it.

http://www.amazon.com/Preventing-Miscarriage-Good-Jonathan-Scher/dp/0060734817/ref=sr_1_1?ie=UTF8&s=books&qid=1256851198&sr=1-1

Leah said...

Have you ever read this blog?

http://peesticksandstones.wordpress.com/

She had major issues with killer cells, etc., and did IVIG therapy...not sure what it involves but you should check her out. She now has a beautiful baby boy after several miscarriages.

Minta said...

I haven't done much research on intralipids or IVIg (1,000 peoples blood, eww), but I have taken Humira for my RA. It is a TNF-a (tumor necrosis factor alpha) blocker. There are lots of other drugs in the same class (Enbrel, Cimzia) all of which seem to have benefits that outweigh the potential risks for women like us (that would those with multiple possibly immune related miscarriages). Unfortunately, I have no sunny success story of how well that worked out for me, but I'm back on the Enbrel now, and my pregnancy protocol (assuming I manage to get pregnant again) is pretty close to the one your wizard advised: Enbrel, Baby Asprin, Heparin & Prednisone. (Well, plus Metformin for the PCOS.)

Leah said...

Oh...and good luck with Denver..I hope and pray that the snow doesn't cause you any problems.

Megan said...

Sounds like you have more to research and mull over. Keep us posted. I like it when you read the big bag medicine books and then post it here in a way I can understand.

Good luck in Denver.

Kate said...

Good luck in Denver.
From the reading I had done after my second miscarriage, I thought intralipids (much much cheaper than IVIG, and not a blood product) were showing very nice results. I guess some of what you end up doing will depend on what your insurance covers, since things like Humira are pretty darn expensive. Hope you come up with a reasonable approach if you decide to give it another try.
I guess he thinks your chromosomally abnormal losses were just bad luck? I thought a lot of the immune stuff caused implantation failure to start with, as well as miscarriages. I guess it could explain the losses of genetically normal babies.
Hope you have some success doing your own research, cause it doesn't sound like he managed to present things in a convincing fashion!

K said...

Will be interested in what they have to say at the Rocky Mountain Kingdom. Knowledge is power.

Just Breathe said...

I'm pretty confused when I read about all the things you have to go through. I'm so sorry. ((HUGS))
I will keep praying for you.

kirke said...

I'm glad you are going to Denver. I hope they can bring something new to the table.

Heather said...

I'm being treated by the guy with the same name as your wizard. I've pursued the immune connection to endo on my own and it seems plausible to me that a misfiring immune system could cause problems. I'm being treated with intralipids and lovenox and am in the midst of my first cycle, so we'll see.

Good luck in Denver.

tishi said...

This is so interesting, I would love to hear
more about your findings as you dig
deeper. I'm sorry though, that this guy is
such a wacko....it would be so much easier
on you if you could build a trusting relationship
with him. Is there anyway you could get some
referrals? talk to others who have worked with
him?

Dora said...

Hmmmm, interesting. The doc's manner still freaks me out, but who knows, maybe some of this stuff won't be so mysterious and controversial in years to come.

Don't know about the other stuff, but lovenox, baby aspirin and prednisone (just 5mg a day, not enough to cause side effects) were added to my last FET starting on transfer day and continued through week 8.

Hope Denver brings some clarity. Hang in there.

Michelle said...

Well, I think it is good that you got some pieces and maybe that will helpful in your appointment next week. I hope all goes well. You will be in my thoughts and prayers!

Another Dreamer said...

I don't know anything about IVIG, but the Lovenox sounds like a possibility- I just say this because I've seen several women whose testing for clotting came back normal, who benefited greatly from adding it. One women I know had to add Prednisone until the second trimester as well as Lovenox, but managed to finally get to her third trimester after seven miscarriages in a row.

Wonder cure no, but it has potential as something that can't hurt to try...

Eileen said...

This sounds like my situation. I'll be doing the Lovenox and IV interlipids. I pray they work for both of us! Good luck in Denver!

Anonymous said...

I am sorry to hear your tests did not come back normal but I can't say I am really surprised. I don't think this is a case of "look hard enough and you'll find something". If you want to do treatment, I think that intralipids are becoming much more common than IVIG these days. Check out the Yahoo RI boards for lots of positive treatment stories and information.

That doctor sounds like a nutter but at least you have the results.You could take them to someone reputable for a consultation. Not sure why he is saying these issues could lead to clotting factors, I haven't heard that before.

Peesticks and Stones is a great blog about a girl who has had success after IVIG (anti-ovarian antibodies).

Good luck. Look forward to seeing what you decide.

Nepsi said...

I am so wary of IVIg. There are a few of us over on the resolve boards that were told by a certain clinic director that we would only have miscarriages if we did it because of our NK cells and all three of us have babies WITHOUT IVIg. Do take all of it with a grain of salt. Some people swear IVIg helped them. I was just never comfortable and what papers I could find said that blood NK cell levels did not correlate to uterine. Also, that if it comes back abnormal it needs to be retested because you could have just been fighting something off (something the RE that tested me did not do or mention). I am sure you will turn stuff like this up on your own.
Take care.

Emily said...

At least you are getting some answers...I am anxious to hear what CCRM has to add to the mix! We need puppy pics!

Mo and Will said...

B/c i've become such a bad commenter, I'm going to try to do what Xbox does in terms of responding to commenters...

@sprogblogger - you're making me feel a little more hopeful about it. This doctor said intralipids AREN'T the same...but as i said, he's a nutter...so learning about them is definitely one of the things I want to look into.

@barefoot - yeah. we certainly don't want to keep doing the SAME thing, right?

@anonymous - my weirdo wizard is one and the same with your book author, fwiw.

@Leah - Yes! have seen it. it gives me some hope.

@Minta - thanks for giving some info on Humira. And yeah,the rest of the regimen does sound similar...

@Megan - ah, thanks! I'm glad our writing is semi-comprehensible!

@Kate - yeah, we need to look into intralipids more - he didn't seem to know that much about them. and yeah, this wouldn't help us with the chromosomal problems, obviously, but we also have the question of what's happened with all 37 embryos that have been created. maybe some are normal but not implanting well?

@K - thanks!

@Just Breathe - I hear you. We find it pretty confusing ourselves! Thanks for the prayers.

@ kirke said...Us too...thanks for stopping by.

@Heather - Oooh...I'll be following along avidly and hoping for you.

@tishi - we'll just do the research ourselves and then decide what to do. as much as we think he's wacky, a lot of people swear by this guy.

@Dora - thanks Dora. You're thoughts and comments are always helpful.

@Michelle - thanks!

@Another Dreamer - we are really considering the lovenox...and maybe the prednisone (altho the latter is associate with fetal cleft palate, etc., apparently)...

@Eileen - Interesting - I'll be following your story! Would love to hear any info you have on intralipids...

@Anonymous - thanks for the info on the RI yahoo boards. much appreciated.

@Nepsi - yeah...this is why we want to be cautious...

@ Emily - great to hear from you! we'll keep you posted about denver. more puppy pics coming soon!

Brenna said...

I just had to pop over to voice my support as well! I read every post, but I'm not as good about commenting because I feel at times like I'm in over my head in terms of understanding all that you're going through. NOT a good reason to be a lurker though, so please know that I'm thinking about you and wishing you well in Denver and beyond!

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strongblonde said...

so. i really like the fortune you have posted at the beginning.

i also think it's good to know something...the problem is what to do with the info. i know someone who used IVIG and it wasn't bad...it just sucks that anyone even has to go through all of this for what other people really take for granted. :(

xoxo

Alexicographer said...

If the fertility-challenged t-shirt/card business doesn't work out, you might consider going into fortune cookies. Not sure how many you have to sell to pay for an IVIg treatment, but I for one would order yours if they come with fortunes like this one. ROFLMAO!

Beyond that, I have no -vice, ass- or ad-. I was glad when I had assorted (fairly mundane, by these standards) tests run, the one (NKa) that would have been an indicator (maybe) for IVIg came back negative. I didn't want to have to think about it. I'm sorry you're finding you do.

PJ said...

Have I told you that I so admire you for your determination and patience?

Very interesting suggestions!

Of course I think the blood clotting thing is particularly interesting, as my bloodwork always comes back ok, and yet we are trying Lovenox too.

Good luck in Denver!

Peaches said...

I'm sorry you left the appt convinced he was a nutter, that can not possibly instill confidence...As you said, run enough tests, bound to find an abnormality, right??? But some of those that came up abnormal seem like they should have been found by your own RE? Or were they not? At least knowing there might be a tangible reason can help, maybe?
I hope your Denver appt brings some better/new/more hopeful info!!

Rebecca said...

As someone who has done everything from Clomid to IVF w/CGH, accupuncture, intralipids, Lovenox, and even high-dose IV antibody therapy in the quest to stay pg, I am probably a bit of a "nutter" myself...But for what it's worth, intralipids are much less expensive than IVIG, don't involve blood products, and can also be effective in some cases. I used them (for high NK cells) when they were part of a study at one of the big IVF chains, and I believe that chain has opted to now use intralipids almost exclusively instead of IVIG. I know several women who give the credit to IVIG or intralipids for their successful pregnancies after multiple miscarriages.

I've also known several women who had great success w/Lovenox. I'm not sure if it was just the test results that prompted the RI to recommend it or if you have other issues such as Factor V, etc. I have to take it because of Factor V.

I am not (yet) a shining beacon of success with all of that stuff, but please don't let that be a discouragement. I was diagnosed a year ago w/a thyroid issue that it turns out I've had since before we started TTC, so it's quite possible that is responsible for a lot of our losses.

I hope you get good information in Denver. Overall, it strikes me as a pretty conservative place, so I wouldn't be surprised if they aren't gung-ho about IVIG or possibly even the Lovenox. In our case, they do want me on the Lovenox due to the Factor V, but Dr. Sch did tell me to my face that the high-dose antibiotic therapy is "vodoo". :-)

Dandle Dreams said...

The "no pea in the podcast" podcasts are by a women called Gabby who ended up using IVIg, you might find her thoughts interesting.

I am not a doctor and no expert on pregnancy (heck, I can't even get knocked up myself), but I do have a PhD in immunology, so please feel free to email me any questions if you need some help deciphering Th1:Th2 ratio or other such things.

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