Saturday, December 26, 2009

Injectables and Intralipids

DH and I went to my appt with the RE at SIRM (Sher Institute of Reproductive Medicine) this past Wednesday, the 23rd.

We were prepared to fight tooth-to-nail for what we wanted: Injectables and Intralipids.

This Dr was the first one to run an immune panel on me back in April '09- might I add, it was pretty sad in comparison to the one Dr Kwak-Kim ran. When the Dr called with the results, he said that nothing was really an issue, and that we had a partial DQ Alpha match, but that alone should not be impeding pregnancy. I felt at the time a little put off, like, he didn't want to waste his time treating me if I wasn't going to shell out for IVF.

He also told me that the MTHFR was no big deal. (The first of many Drs to say this.)

Since that time, my second (and current) hematologist, along with Dr Kwak-Kim, have found a bunch of other little issues here and there, that when added up, definitely explain my current inability to get pregnant and/or implant. There's PAI-1, fluctuating APAs, and fluctuating NK Cells (which, at the last testing, were over the limit for their killing power at 18.8%).

When we went into the appointment, the Dr looked at us both and said, "Oh, I haven't seen you two in a while! So, what's been going on?" I gave him copies of the pertinent lab work, particularly the NK Cell Assays performed since April, and explained about Dr. Kwak-Kim and her Biophysical Uterine Profile (the special Doppler ultrasound with measurement of pulsatility index in the zone of implantation). He seemed intrigued at best, and let me continue talking. I told him the treatments I was currently taking (Lovenox, and then most recently prednisone for elevated NK Cells), but said that I wanted to see if Intralipids would work better.

Intralipids are the synthetic version of IVIg, and, might I add, a WHOLE lot cheaper ($300-600 a pop vs. $4,000 - 6,000 a pop). However, Dr Kwak-Kim does not use Intralipids, and the only Drs I know who currently are using them are the SIRM Drs. Luckily, when I had my first NK Cell Assay performed at SIRM, they tested my cells against BOTH IVIg and Intralipids to see how each one would suppress the killing abilities of my NK cells. That test revealed the following:

My NK Cells on their own: killing power of 6.7%
NK Cells with IVIg: 3.5%
NK Cells with Intralipids: 4.0%

As you can see, my NK Cells respond very similarly to both IVIg and Intralipids, so there really would be no need for me to use IVIg vs. Intralipids.

Much to our astonishment, the Dr. agreed that we should try Intralipids!! When I brought up being concerned about the DQ Alpha match, he responded, "At the time when your NK Cells were so low, it didn't matter about your partial match, because the 2 work together to 'expel' your husband's half of the pregnancy. But now that you've seen elevated NK Cells, it is certainly worth a shot to try Intralipids."

He then explained that how he usually does Intralipids is once before pregnancy (I assume around ovulation?) and then once after a 2nd beta reveals an adequate rise (to make sure it is a viable pregnancy). Then he said for US, he would probably like to see us continue having an infusion of Intralipids once every month up through the 5th month of pregnancy.

He said, "This is almost unchartered territory for me, because almost all people we treat with Intralipids are doing IVF." We were pleasantly surprised to hear him say that he remembered we were not interested in going that route. (Actually, what he said exactly was, "I remember you are not doing any of the high-tech fertility treatments, right?" I had to choke back a laugh at that, thinking back on the ovarian wedge resection, the 2 selective hysterosalpingograms, the uterine lavages, the prostate injections, the 10-day IV antibiotic drip... yes, we're simple folk. We don't like that high-fallutin' technology stuff. But hey, whatever he wants to call it is fine by me, as long as he respects that we're not doing IVF or IUI.)

So, he said to be on the most safe side, continuing with Intralipids through the 5th month would be best. I agree that we would not want to stop early in the pregnancy, but during pregnancy I would see what Dr Kwak-Kim's protocol is for IVIg throughout the pregnancy. I think she continues it even after the 5th month. But I know she also is constantly re-checking the NK Cells, so maybe I'll need it, maybe I won't after Month #5... (oh, who am I kidding? I'm sure I'll need it, with my f'd up body. That is, if all of this stuff will even finally work... I'm not so sure...)

So, he told us we would need to contact a home infusion company to set up the infusions and figure out if they can get the meds, too. Luckily, from our Dr Toth treatment we are already likethis with our in-network home infusion company.

As he was wrapping up the meeting, I added quickly, "I also wanted to ask you about injectables..." He was all ears. "Sure, we could do that!" No fight necessary! And no push for IUI! He briefly explained how it would work, and that the nurse would be calling us for an injectables class, etc. etc. Only problem is we can't start it this cycle since there's not enough time to squeeze-in the injectables class. But the good news? When I asked what drug he prefers to use, he said, "Usually Follistim, but it depends on what your insurance will cover or what you can afford." Oh, what a coinky-dink! Follistim just happens to be the drug I have sitting in my fridge (from whence it came, I shall not say, but a barren woman's gotta do what a barren woman's gotta do)!

So, February will be our Injectables/Intralipids Cycle. I cannot wait!

In other news, we have a meeting January 11th with our Social Worker and the Branch Director to discuss whether or not we CAN proceed with the adoption homestudy. OMG, talk about stress :( Please pray!


Shannon said...

I kept thinking as I was reading your post, "Wow, God's hand is really in this for them!"

I am praying for you--this all sounds like great news!

mrsblondies said...

Wow, that's awesome how much of the treatment stuff is coming together for you right now. I'm glad you found a Dr. you could work with on the intralipids and injectables. It's great that he listen to you and respected that you won't do IUI and IVF.

Good luck with the SW meeting and I'll be praying for you.

LifeHopes said...

Whoah, Nellie!! There is a LOT in the works right now up there!!!

This was an awesome post.

Even though your Dr. doesn't view any of this as "high-tech" (haha) I think this was an AWESOME appointment!!

I have found that when we are secure about our approach to treating our IF, it doesn't really matter what other people think about it (as long as they aren't constantly berating us, that can be difficult no matter what).

YAY for follistim! I bet your per cycle chances will increase BIG time with that!!!!

And I will remember you on the 11th with your appointment with your social worker. May God's will be done. Do not fear, I just know He is working on something beautiful for you!!!

the misfit said...

WOW that is a lot of stuff. So glad to hear things worked out well with your doctor guy. Will be praying about the adoption homestudy!

barbie said...

sounds like a great appointment and things will be moving along. I'll be praying about your SW visit! God Bless.

... said...

Great appointment and I'm excited about the follistem! How much do you think you will be doing?

And thank you for the comment. I do not know enough about this ovarian mass and what it "could" be so you gave me a lot of information for my appointment on Tuesday. I didn't do stimulations or a trigger this cycle (haven't since August) b/c I was on a mandatory TTC break for the m/c. My cycle was long (81), but I suspect that was due in part but the HCG from the miscarriage did not zero out until CD 49. Again, thanks for the info.

Bonnie said...

Our new RE, the one were seeing in Feb, just started doing intralipids. On his website it states it is like $400 per week/IV. I don't know if we can afford that. Is it covered by insurance. You will have to write down your protocol. Are you doing all of this AND lovenox?

Anonymous said...

Definitely will pray that your appt on the 11th goes well! and Congrats on the dr. being willing to work with you on the treatment you need!

Amy @ This Cross I Embrace said...

Bon, yeah, unfortunately I need to continue the Lovenox whenever I'm TTC or pg, because w/o it I can't implant or the placenta will clot up. But I've gotten used to it, it's really not too bad.

I'm looking into if insurance will cover it at all. Apparently C.olumbia Pha.rmacy sells it at the cheapest rate, but if insurance will cover it at all, even better! They will cover IVIg in some cases, so I'll be sure to ask them about both when I call.

I'll be sure to post the final protocol when I know what dose of Follistim, etc. Thanks for the comments everyone!

Vent-ilation said...

Even though the medical stuff sounds like a foreign language to me, I can tell it's all good stuff for you! Praying that your body shows that RE what "non" high-tech (ha ha) success looks like :)

Sew said...

You just take fertility to a whole new level! It amazes me the running power you have to get things done! I'm loosing steam over here and you are running full steam ahead!

I admire you for it! I just know it's coming for you! I just know it!

WheelbarrowRider said...

Wow! Great update! I had to lol about the "high tech" part too, you rolled with it great! I also laughed about the "who am I kidding?" part-I was the same way about prog through pregnancy and, of course, I needed it for the long haul! Keep pluggin' away!

doctorgianna said...

Such a coincidence that you should mention Reproductive Immunology on your comment on my blog. At first I didn't think it was an issue for me, but recently I've been suspicious. My husband and I recently had a serious talk about it wondering if we should go down that route. Funny that I have had to have so many losses before convincing myself that immune issues might be the problem. I've had the basic screening studies done (all normal except heterozygous for MTHFR but with normal - even low-homocysteine), but haven't had any of the more involved immunity panels (NK Cells, DQ Alpha, etc). I've found a lab in L.A. that will do all the labwork for you and provide a consultation without having to travel there. Do you have any suggestions on how to approach this field of medicine in the most efficient way? I actually want to get the extensive panel and not just a picking and choosing of certain factors. I'd also not like to travel unless I absolutely had to and Chicago would be a possibility. I would like to have some answers, even if everything comes out normal. My e-mail is on my profile if you ever get the chance to help me out here. I've read about your experience with Dr. Kwak-Kim and it sounds like she gave you some answers!

God bless you!