Friday, April 27, 2012

A New Diagnosis: 6 HLA Matches and Absolute DQ Alpha Match



After 3 years with no helpful answers, I feel like I'm finally getting the answers we've been searching for. Not only did we discover and treat the Asherman's, but we finally had a full immune panel done with Dr. Braverman of NY, who specializes in recurrent loss and reproductive immunology.  Most of my bloodwork came out normally although I have slightly elevated risk for blood clots due to heterozygous mutations for both ACE I/D and PAI-1 (4G/5G) genes which will be treated with Lovenox. 

However, the really BIG finding is that my husband and I share way too many HLA genes! We actually share 6 genes but 3 of them are homozygous on DH's side, so that means our embryos are going to constantly look too much like me genetically (eg altered self) instead of an embryo (eg non-self).  When the body sees what appears to be altered self (like cancer), the immune system launches an all out attack. This is actually the opposite problem with organ transplants where HLA genes need to be the similar...in pregnancy they need to be different!  This may explain why my NK Cells are slightly elevated too: my immune system has been attacking our pregnancies over and over again. I am officially at 6 consecutive losses but I know there have been more that were lost so early that we couldn't get to a positive beta/HPT.  Dr. Braverman says that 5 or more matches are significant, with certain matches being more important than others. One of the discoveries is that we have an "absolute DQ Alpha" match of 4.1 (05) which is the worst possible gene because it most resembles cancer to the immune system according to Dr. Alan Beere. 

Here's our HLA gene panel:

Me:
DQ Alpha: 1.3, 4.1 
DQ Beta: 03,06
HLA A: 02, 24
HLA B: 33, 51
HLA C: 01, 05
HLA DRB1: 11, 13
HLA DRB3: 01, 02 
DRB4, DRB5
DH:
DQ Alpha: 4.1, 4.1
DQ Beta: 03, 03 
HLA A: 02, 32
HLA B: 15, 51
HLA C: 07, 14
HLA DRB1: 11, 12
HLA DRB3: 02, 02 
DRB4, DRB5
I highlighted all our matches....6 total but more like 9 with 3 of them being homozygous (the same) on DH's side. The only gene without a match is HLA C. Who knew we were so much alike? It's so weird!!

Some RE's say there is no treatment for this kind of genetic match and that a woman must use a surrogate to ever have a baby with her husband because the interaction is between her body and her husband (not her eggs). Others treat this with heavy doses of IVIG (super expensive) and steroids/prednisone and/or LIT (injecting the husband/partner's leukocytes into the woman's body...only done in Mexico at this time since it was outlawed in the US).  However, Dr. Braverman is treating this problem with success using Neupogen. Neupogen seems to be a miracle drug for this issue and while it's expensive, it's nowhere near as expensive as routine IVIG or flying to Mexico over and over again for LIT. 

Neupogen deserves a post of it's own, so for now I will list my treatment plan, which I started this cycle under Dr. Braverman's monitoring:

-Intralipid Infusion for elevated NK Cells (before ovulation, after a BFP)
-Lovenox for clotting risks at ovulation
-Neupogen at ovulation for the HLA matches

Here's a funny site describing why HLA genes need to be different in partners...apparently they match people up by analyzing their DNA!
http://www.genepartner.com/index.php/science

Wish me luck! Prayers accepted!  We're trusting God and utilizing science. :)






I Beat Asherman's :)

I am here to tell you that all is not lost if you develop Asherman's. I completely freaked out when I was diagnosed and I had a moderate case, but after 1 surgery with the right surgeon, all scarring was removed and did not return. Sometimes, it will take more than one procedure, but it can be beat. On my follow up hysteroscopy (after surgery) that was done here locally by a different RE, we were amazed that absolutely no scarring had come back and so no further cutting was required.

The KEY to beating Asherman's is not only prevention (avoid a D & C if at all possible!!), but having it treated by only experienced Asherman's surgeons. I cannot emphasize this enough because most OB's and RE's are not trained or experienced to handle AS despite what they say.  An experienced surgeon will NOT make AS worse (which many doctors do inadvertently) and they can do in 1 or just a few surgeries what it can take others many procedures to accomplish.  Basically, if treating AS is not something a doctor does every week, then don't have them treat you.

I have an HMO but found out that one of the top AS surgeons was in network. My surgery was totally covered but I did have to fly to Boston to have it done. In the end, the only expense was airfare and a one night hotel stay. Not bad for getting my uterus back in perfect shape!

The timeline was:

January 2012: diagnosed with Asherman's with an HSG at my request after 2 years of no diagnosis despite my complaints to doctors of a lighter/shorter period since my D & C's

February 2012: Asherman's hysteroscopic surgery to remove scarring followed by a round of estrogen. I treated myself with enzyme therapy (Medizym V), Red Rasberry tea and Castor Oil packs during recovery.

March 2012: Follow up hysteroscopy showed no return scarring.

April 2012: Cleared to try and conceive again!