question for those with success after a few DE failures

question for those with success after a few DE failures

Anonymous
Anonymous

March 21st, 2011, 8:16 pm #1

For those of you with multiple DE failures, how did you finally get success? Was it immune or was it thin lining? I've done multiple blast transfers and no BFP, not even a chemical. I tested for immune issues - did lovenox, and prednisone. Even did IVIG but still nothing. Are there any other tests I can do?
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Anonymous
Anonymous

March 21st, 2011, 9:14 pm #2

Sometimes that is the factor after being through absolutely everything. It makes sense since many DHs here are older, overweight, stressed, etc.

Has your DH done the SCSA test?

On the other hand some people even after failing with immune treatments have success but have to do multiple cycles.
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Joined: January 19th, 2007, 7:18 pm

March 22nd, 2011, 3:28 am #3

For those of you with multiple DE failures, how did you finally get success? Was it immune or was it thin lining? I've done multiple blast transfers and no BFP, not even a chemical. I tested for immune issues - did lovenox, and prednisone. Even did IVIG but still nothing. Are there any other tests I can do?
it was immune, even though I initially failed DE cycles 2 & 3 with immune treatment.

I'll try to be brief, but it's hard with my history.

Failed DE cycle #1 & switched to an immune issue friendly RE after karyotyping & sperm DNA fragmentation were normal & clinic refused to consider any immune testing beyond the very basics most clinics do. The embryo quality was mediocre, so I didn't expect immune issues to be a factor, but I wanted to rule them out before proceeding again.

Selected a new donor & proceeding with the new RE. He did a few more immune tests, including for NKs & TH1/TH2.

RE prescribed a low dose of IVIG for the fresh cycle based on high NKs. BFN again. Did FET #1 with Humira. BFN. Both of those cycles were accompanied by very weird sensations during implantation, like waves of contractions rolling over it. Very, very weird, & I posted about it at the time. Embryos were perfect.

Got suspicious b/c both transfers involved perfect embryos, so I got copies of my test results so I could see for myself & started poking around. Verified I had high NKs just prior to the fresh cycle & borderline NKs for the FET. I couldn't understand why my RE had me do IVIG one day prior to ET with high NKs when other sources indicated at least a week prior to give it time to work. Also, his standard dose is low vs. based on weight. Questioned RE. Got nonsense answers. Also, he rx'd Humira not based on medical need verified by a test but "just b/c" Beer had some success with it. I didn't understand any of that at the time.

Decided to move to Beer Center for the immune issues. Figured for peace of mind I wanted to know I'd done everything. Stricker agreed the IVIG was too little too late with fresh cycle & Humira wasn't indicated for the FET, but IVIG was, which I didn't have.

Did FET #2 with Beer Center. Borderline NKs. They said to do IVIG with a + beta. I was worried by then about implantation flare, so pressed them about that issue & being aggressive, so they agreed to IVIG prior to ET. Early BFP & beta, very high NKs at about 13dpo. Ended up doing IVIG every 3 wks. for 16 wks. & again at 31 & 34 wks. but delivered a healthy baby.

Fast forward to 3rd fresh cycle for a sibling. Same donor. Preliminary testing this time showed high TH1/TH2, which was a new issue for me. 2 months of Humira did nothing but cause a flare. Lowered it with IVIG & cleared to cycle. 2-3 months later I did the transfer. I was assured by my RE & the Beer Center that my results from several months ago were likely still accurate. Against my better judgment, I did not retest prior to ET & we proceeded. BFN following weird symptoms for half a day during implantation window.

With the FET, I don't remember my NK results. They were either normal or borderline, but I did IVIG pre-transfer again & it was a BFP. That started another weird saga with low, non-doubling betas & being told to go off of meds for a non-viable pg. Again followed my gut on this & stayed on meds. (Actually not my gut in that I didn't believe it was viable, either, but I felt with a rising beta, I had to be sure & ride it out.) The non-viable pg. is alive & well. Interestingly, I did do 1 or 2 IVIGs post-pg. without testing, but once I began testing during the pg., my range was normal, so I do believe that things aren't static in terms of immune issues.

If I sound jaded, I am, but I earned it, I think. My 2 pgs. were in cycles where I insisted on certain things for peace of mind & I had failures where I trusted the doctors & ignored my inner voice. I'm not suggesting that you do anything further with immune treatment. There are real drawbacks to the area of medicine. I've posted on those numerous times before so won't go into them again, but I wanted to acknowledge them. There are plenty of women who test + for immune issues & get pg. without treatment. There are other like me, too, though.

Based on what I've been through, I would strongly suggest to all women that they get a copy of their own test results & do their own research so they can ask questions & make decisions. Not limited to immune treatment, but to everything. Don't accept "normal," "borderline," etc. Get the results & look for yourself. I have a number of friends from the board who also have crazy stories along these lines. Inaccurate results reported, misinformation, etc.

Of all the doctors I've discussed this general issue with, the only ones who acted as if they knew it all were in the field of infertility. And I did my IVIG almost exclusively at a hospital outpatient clinic, so encountered so many people there who have similar stories about having to fight for answers, all non-fertility related. As you can imagine, I was the lone duck doing IVIG in such a place for fertility. So my point is that all these people there doing IVIG & steroids & other things for horrific autoimmune diseases had to fight hard for answers. One man spent years fighting for answers before finally being dx. at the Mayo Clinic. I belabor that point only b/c on occasion posters criticize women for seeking answers & questioning doctors. Yet the reality is, it is not only OK to question but imperative sometimes.

So be your own advocate. At the time I was dealing with all of this, there were other women exploring various areas, so I learned a lot that way. I confess I don't follow this board closely, but I don't see the kind of informational posts now that I did then. People move on, etc. So I guess that's one reason I'm taking the time to post this long saga. The tests I mention below are examples of things that came up during my journey.

If the cycles with the Beer Center had not worked, I was next planning to look into Dr. Kliman's EFT & Adeza's e-tegrity test, both of which deal with lining deficiencies. I went as far as ID'ing a few clinics in my state that would do each test.

Along the way, I did 2 endo. biopsies with the Beer Center for NK cells in the uterine lining (cd57 cells), but those were both negative.

I also did the color doppler u/s to check for blood blow to the uterus. That was OK on one side & borderline on the other. It's been a long, long time since I've looked into those issues, so I imagine things have changed on all fronts.

Also, intralipids were just beginning to be discussed on the board around the time of my 2nd pg., so I didn't really explore that as treatment given the IVIG seemed to work for me & I did have 90% coverage by sheer divine intervention (I still live in fear I will get billed after all this time).

I hope this helps some. It is very difficult to figure out what else to do, if anything. Embryo quality is clearly critical, so sorting out whether the problem was the embryos vs. something with your own body can be very difficult. Ruling out male factor is a comparatively easy, inexpensive first step. I know a number of women who did all the immune stuff without the doctors being willing to look into male factor. Insist if that's the case! I know several compelling stories that ultimately ended with male factor being an issue & that was only after so much time & money was spent on the woman's issues.

OK, this is too long & I'm having trouble with this site, so I'm posting it before I get cold feet or lose it all.
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Joined: January 1st, 2006, 3:50 pm

March 22nd, 2011, 2:03 pm #4

For those of you with multiple DE failures, how did you finally get success? Was it immune or was it thin lining? I've done multiple blast transfers and no BFP, not even a chemical. I tested for immune issues - did lovenox, and prednisone. Even did IVIG but still nothing. Are there any other tests I can do?
After transfering perfect 5 day blasts in three fresh DE cycles and the fet from cycle #3 - we had not even had a chemical, and no explanations, no immune issues were showing up on tests and we had transferred 2 blasts the first cycle, then three on each of the following and always had linings of 9+. I'd also had bio children when younger, so knew my body COULD do it.

For our Fourth Fresh DE cycle, we changed quite a bit - did b/c instead of Lupron, since Lupron over suppresses me. I started prednisone at the same time I started estrogen, taking 5mg three times a day. We also used DS, even though DH's had looked great every time and the DNA Frag came back fine; we were just fed up with doing the same things time and again. I did PIO injections every other day, with crinone every night instead of progesterone pills as my body doesnt seem to absorb the pills. The Dr suggested "anti rejection' injections the day before and day of transfer (just more steroids). We again transferred three grade 1 blasts, it was a six day transfer due to complications on day 5. BFP with a singleton.

We then did an FET using the last three blasts from donor cycle #4, and did everything the same- b/c, started prednisone early, anti rejection injections. All three blasts survived the thaw, we transferred all three, and are again pg with a singleton.

In all it took us 6 transfers and 17 grade 1, five day blasts from four fresh cycles and two FETs to get our little guy and the one we are pg with now. We'll never know what finally brought us success - it might have been one of the things we changed, a combination of all, or the heavens finally aligning properly.

I still think its just a crap shoot. Some people get lucky, others have to keep playing and paying the game. The doctors themselves have no idea why some cycles work and some dont. Its just amazing when you think about it: all the science, all the technology, and it can still only take us to transfer, after that, its still up to the wind, the univserse, whatever god(ess) you believe in, crossing fingers, saying prayers and wishing on the stars.

Good luck!



Kay

" Some people built castles in the air. She constructed hers from mashed potatoes, which kept down demolition costs." Sarah Sloane, Borrowing Priviledges
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Joined: September 6th, 2007, 1:40 am

March 22nd, 2011, 9:35 pm #5

it was immune, even though I initially failed DE cycles 2 & 3 with immune treatment.

I'll try to be brief, but it's hard with my history.

Failed DE cycle #1 & switched to an immune issue friendly RE after karyotyping & sperm DNA fragmentation were normal & clinic refused to consider any immune testing beyond the very basics most clinics do. The embryo quality was mediocre, so I didn't expect immune issues to be a factor, but I wanted to rule them out before proceeding again.

Selected a new donor & proceeding with the new RE. He did a few more immune tests, including for NKs & TH1/TH2.

RE prescribed a low dose of IVIG for the fresh cycle based on high NKs. BFN again. Did FET #1 with Humira. BFN. Both of those cycles were accompanied by very weird sensations during implantation, like waves of contractions rolling over it. Very, very weird, & I posted about it at the time. Embryos were perfect.

Got suspicious b/c both transfers involved perfect embryos, so I got copies of my test results so I could see for myself & started poking around. Verified I had high NKs just prior to the fresh cycle & borderline NKs for the FET. I couldn't understand why my RE had me do IVIG one day prior to ET with high NKs when other sources indicated at least a week prior to give it time to work. Also, his standard dose is low vs. based on weight. Questioned RE. Got nonsense answers. Also, he rx'd Humira not based on medical need verified by a test but "just b/c" Beer had some success with it. I didn't understand any of that at the time.

Decided to move to Beer Center for the immune issues. Figured for peace of mind I wanted to know I'd done everything. Stricker agreed the IVIG was too little too late with fresh cycle & Humira wasn't indicated for the FET, but IVIG was, which I didn't have.

Did FET #2 with Beer Center. Borderline NKs. They said to do IVIG with a + beta. I was worried by then about implantation flare, so pressed them about that issue & being aggressive, so they agreed to IVIG prior to ET. Early BFP & beta, very high NKs at about 13dpo. Ended up doing IVIG every 3 wks. for 16 wks. & again at 31 & 34 wks. but delivered a healthy baby.

Fast forward to 3rd fresh cycle for a sibling. Same donor. Preliminary testing this time showed high TH1/TH2, which was a new issue for me. 2 months of Humira did nothing but cause a flare. Lowered it with IVIG & cleared to cycle. 2-3 months later I did the transfer. I was assured by my RE & the Beer Center that my results from several months ago were likely still accurate. Against my better judgment, I did not retest prior to ET & we proceeded. BFN following weird symptoms for half a day during implantation window.

With the FET, I don't remember my NK results. They were either normal or borderline, but I did IVIG pre-transfer again & it was a BFP. That started another weird saga with low, non-doubling betas & being told to go off of meds for a non-viable pg. Again followed my gut on this & stayed on meds. (Actually not my gut in that I didn't believe it was viable, either, but I felt with a rising beta, I had to be sure & ride it out.) The non-viable pg. is alive & well. Interestingly, I did do 1 or 2 IVIGs post-pg. without testing, but once I began testing during the pg., my range was normal, so I do believe that things aren't static in terms of immune issues.

If I sound jaded, I am, but I earned it, I think. My 2 pgs. were in cycles where I insisted on certain things for peace of mind & I had failures where I trusted the doctors & ignored my inner voice. I'm not suggesting that you do anything further with immune treatment. There are real drawbacks to the area of medicine. I've posted on those numerous times before so won't go into them again, but I wanted to acknowledge them. There are plenty of women who test + for immune issues & get pg. without treatment. There are other like me, too, though.

Based on what I've been through, I would strongly suggest to all women that they get a copy of their own test results & do their own research so they can ask questions & make decisions. Not limited to immune treatment, but to everything. Don't accept "normal," "borderline," etc. Get the results & look for yourself. I have a number of friends from the board who also have crazy stories along these lines. Inaccurate results reported, misinformation, etc.

Of all the doctors I've discussed this general issue with, the only ones who acted as if they knew it all were in the field of infertility. And I did my IVIG almost exclusively at a hospital outpatient clinic, so encountered so many people there who have similar stories about having to fight for answers, all non-fertility related. As you can imagine, I was the lone duck doing IVIG in such a place for fertility. So my point is that all these people there doing IVIG & steroids & other things for horrific autoimmune diseases had to fight hard for answers. One man spent years fighting for answers before finally being dx. at the Mayo Clinic. I belabor that point only b/c on occasion posters criticize women for seeking answers & questioning doctors. Yet the reality is, it is not only OK to question but imperative sometimes.

So be your own advocate. At the time I was dealing with all of this, there were other women exploring various areas, so I learned a lot that way. I confess I don't follow this board closely, but I don't see the kind of informational posts now that I did then. People move on, etc. So I guess that's one reason I'm taking the time to post this long saga. The tests I mention below are examples of things that came up during my journey.

If the cycles with the Beer Center had not worked, I was next planning to look into Dr. Kliman's EFT & Adeza's e-tegrity test, both of which deal with lining deficiencies. I went as far as ID'ing a few clinics in my state that would do each test.

Along the way, I did 2 endo. biopsies with the Beer Center for NK cells in the uterine lining (cd57 cells), but those were both negative.

I also did the color doppler u/s to check for blood blow to the uterus. That was OK on one side & borderline on the other. It's been a long, long time since I've looked into those issues, so I imagine things have changed on all fronts.

Also, intralipids were just beginning to be discussed on the board around the time of my 2nd pg., so I didn't really explore that as treatment given the IVIG seemed to work for me & I did have 90% coverage by sheer divine intervention (I still live in fear I will get billed after all this time).

I hope this helps some. It is very difficult to figure out what else to do, if anything. Embryo quality is clearly critical, so sorting out whether the problem was the embryos vs. something with your own body can be very difficult. Ruling out male factor is a comparatively easy, inexpensive first step. I know a number of women who did all the immune stuff without the doctors being willing to look into male factor. Insist if that's the case! I know several compelling stories that ultimately ended with male factor being an issue & that was only after so much time & money was spent on the woman's issues.

OK, this is too long & I'm having trouble with this site, so I'm posting it before I get cold feet or lose it all.
Was there anything particular that made you think you had those issues?

Or were you just looking for answers.

This is an amazing saga.

I have had a few immune tests but I have honestly shied away a little bit from getting $5,000 worth of tests yet...It would eat up all the money I would have--I would then have to wait so much longer to try again.

Anyway, I'm really glad you found answers! I don't know if I have it in me to be this assertive with doctors.

The part about not quitting your meds was especially amazing. I could see doing that--but wow, what if you had? Do you ever want to kill them for not seeing you were going to have a baby?
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Joined: August 12th, 2004, 4:42 pm

March 22nd, 2011, 10:27 pm #6

For those of you with multiple DE failures, how did you finally get success? Was it immune or was it thin lining? I've done multiple blast transfers and no BFP, not even a chemical. I tested for immune issues - did lovenox, and prednisone. Even did IVIG but still nothing. Are there any other tests I can do?
I went to someone who had knowledge and experience in treating for infertility. I hope you have success soon!

Maya
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Ariadne
Ariadne

March 23rd, 2011, 5:14 am #7

Was there anything particular that made you think you had those issues?

Or were you just looking for answers.

This is an amazing saga.

I have had a few immune tests but I have honestly shied away a little bit from getting $5,000 worth of tests yet...It would eat up all the money I would have--I would then have to wait so much longer to try again.

Anyway, I'm really glad you found answers! I don't know if I have it in me to be this assertive with doctors.

The part about not quitting your meds was especially amazing. I could see doing that--but wow, what if you had? Do you ever want to kill them for not seeing you were going to have a baby?
Initially I was just looking to rule them out & I fully expected to do that. With my history & a failed DE cycle, I was worried we might have a hidden issue beyond egg quality, but still, I believe at a basic level that my results would be normal. I just wanted to make sure that we weren't going to throw money away on a 2nd fresh cycle if we had other issues in the way.

The testing & treatments are hugely expensive. Also, many women test + for issues but are able to get pg. with no problem, so doing testing just to screen for issues is tricky & imprecise, to say the least. Although I suppose that applies to all areas of medicine, as we're all unique. Anyway, there are very real reasons to be cautious about simply wading in & doing all the testing without some indication that it might be an issue.

I just want them to remember what happened & make sure a pg. isn't viable before calling it a day. It's a potential life at stake & I can't understand risking that if there's a chance. I've had a lot of disappointments with doctors & staff in the infertility field, so I'm no longer surprised by anything they do, but at times I do look at my son & marvel that they were so sure the pg. was not viable. Sure enough to say to stop meds. They were wrong, though, & it's a reminder that doctors are far from perfect or all knowing.
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