Recurrent m/c and failed cycle

ninami · November 2018

Anyone here with recurrent very early m/c with PGD normal embryo and failed fresh cycle? Work up for immune issues? Now on prednisone 10mg and planning FET this month. Very confusing information out there about this stuff.

katie35 · November 2018

Hi @ninami. I have not had recurrent miscarriages but my RE has decided to put me on Prednisone as well due to recurrent implantation failure (1chemical, 5 failed FETs). She has me on 20mg daily starting the cycle prior to the transfer. I think she wants to go this route as we have tested pretty much everything else and can't find a reason for it. My last transfer was with a good quality PGS normal embryo after confirming transfer window with ERA. I agree, there seems to be a lot of debate out there regarding Prednisone. I have decided to trust my RE on this one. She also has us doing a mock cycle before the real cycle so we can do an endometrial function test as well. I will be on the predisone for that as well so we can mimic the actual transfer cycle for the test.

How long will you be on the Predisone prior to transfer? Did they do any immune work up for you?

ninami · November 2018

Hi @katie35. Your story sound similar. I got pregnant after a trigger and timed intercourse without any stim June 2017 but ended up with chemical. Then did another trigger and got pregnant but slow rise hcg, then doubling, hell for several weeks and miscarried at 7 weeks. RE figured since I was already 40 its genetics so went with IVF and PGD. First FET in Feb 2018, great first BFP, hcg 288, 2 days later it drops and I miscarried. Sent me for heme and immune work up. Heme all normal, no antibodies, immune showed NK% elevated so tried next transfer with prednisone 5mg twice daily, which was killing me, and did intralipid and BFN with PGD normal embie. BTW, both cycles were natural so no prep just prometrium suppositories. So we tried a fresh cycle in August, transfered 2 great 5 day looking blasts and didnt take. Everyone scratching their head, super frustrating. Went to see this lady Kwak-Kim in Chicago as she seems to have the most data and experience, did insane number of tests. Now doing programmed FET, been bleeding on birth control pills like crazy but almost done. Started prednicone 10mg as per her rec and will recheck NK activity next week to see if she recommends IVIG which I hope to avoid. Super scant and confusing info but do hear from women who've never gotten pregnant do after either steroid or IVIG. Never did ERA, talked about it but decided to just do programmed cycle. Where are you located if you don't mind asking?

ninami · November 2018

ninami · November 2018

@katie35. It looks like I will be on prednisone for at least a month before FET.

suzycupcake · November 2018

Hi @ninami, welcome

Why don't ya join in on the Nov FET thread going. Would love to see you there! There are a few of us left still waiting to transfer in November.

ninami · November 2018

Nice to meet you suzycupcake, thank you for the invite:). Would be great to be part of this group.Where do I find the threat? Still figuring out this site and message board.

suzycupcake · November 2018

@ninami Here is a link to it Nov FET thread

ninami · November 2018

Thanks!

katie35 · November 2018

@ninami your story does sound familiar! I am in the Grand Rapids MI area. Are you from Chicago? My RE actually gave me Dr. Kwak Kim's information in case I was interested in consulting with her. I haven't called them yet. Figured see how this next cycle goes first. What kind of side effects did you have from the Prednisone? I have read that they can be semi terrible. For the NK cell test, is that just a blood test? Keep us posted on your results next week. I am curious as to if your NK cells came down. Crossing my fingers for you that they do and you can avoid the IVIG!

ninami · November 2018

@katie35- I'm from NY and did see a reproductive immunology guy here back in March. She is very scientific and thorough. NK is a blood test, they will recommend a uterine biopsy as well but I had laproscopy/hysteroscopy done in September looking for endo and polyps so said no to her. I've been poked enough. My husband's friend is high risk OB and does peer review of research articles in the field, he told me about Kwak, was very impressed with her stuff and results. Again, none of this stuff is confirmed on large scale or with proper studies, all still seems anectotal, work up expensive and treatment not simple and $$$$$. She did tell me I have anti- ovarian antibodies and probably PCOS since my AMH is super high for my age and I hyperstimulate. But my eggs are out so don't see how that matters now. I think its def worth for you to try prednisone. Did they test you for clotting disorders or endometriosis?

Prednisone just makes me agitated and gives me heart burn, but nothing crazy.

I will keep you posted and you do the same!

XO

katie35 · November 2018

@ninami that is what my RE eluded to as well. That the treatments if we went route of an immunologist are complex and can be expensive. It is nice to hear though that she has such a good reputation and that your husbands friend was impressed! We did do testing for clotting factors and that was fine. I don't believe they looked into endometriosis at all?

Yes! I have noticed the hearburn too. It has snuck up on me a couple of times now. Other than that I just noticed I am not sleeping as well. At least not staying asleep. I am hoping that will get better with a little time.

And sounds great! I will keep you posted and will look for updates from you as well!

ninami · November 2018

@katie35 what I took from it all is you have to take it with a grain of salt. If not harmful to you or the baby then worth doing. All these protocols are all over the place with no consistency. Sounds like your doctor is very reasonable

katie35 · December 2018

Hello @ninami! Just wanted to check in and see if you received your NK cell test results? Will you be moving forward with the IVIG?

ninami · December 2018

Hi @ katie35! So now more confused than ever, if only possible. After a month on 10 mg prednisone my repeak NK levels actually went up. Not sure what that means, either its a fluke, the lab has poor standardization of their values or I have a bizarre immune system. For now they have increased my prednisone to 20mg, its making me nuts, and considering IVIG maybe next week. My RE at Cornell said if already following immune protocol then just go all the way, but of course that group does not believe in all this stuff. Then again, they have nothing to offer to women who have failed multiple transfers for no reason other than surrogacy. My most concerning part of IVIG is its a blood product so where it comes from.

How have you been? Any progress on your end?

sungirl39 · December 2018

*Lurking* can you do intralipids instead of IVIG? That's what I used a few months ago, I'm pretty sure studies show the results are similar.

ninami · December 2018

Hi @sungirl39! Thanks for "lurking" in:). None of this stuff has any real studies. Intralipid studies seem even less compelling than IVIG, only clinics experiences. I did intralipids for my FET back in April, along with aspirin and lovenox and tossed in some low dose prednisone and did not work. It was the first time embryo did no even implant. Granted, I don't think my transfer was properly timed and only to my natural cycle. I am rechecking my NK levels next week to see if higher prednisone dose would reduce them. After 3 losses and few failed transfers feels like just doing it all the way.

What was your protocol and did it work?

sungirl39 · December 2018

Gotcha, sounds like you've been through a lot. Cornell has some great Drs. I was at RMA in NYC years ago when I needed help having my first. I had several friends at Cornell, they said the Drs were awesome. I am in L.A. now, after a few failed transfers my RE here had me do the following protocol...it did work, currently 20wks along. (Like you. I also hyper stimulate, I ended up with severe OHSS from this FET since I had to use menopur/ganirelix/hcg trigger to thicken my lining.) So many meds, its nuts what we put our bodies through.

A wk before transfer: Intralipid Infusion
A few days before transfer start the following meds:
Aspirin 1x per day
Prednisone 2x per day, am/pm
Lovenox shots 1x per day
Day before transfer: start antibiotics, take 2x per day for the next 5 days.
Two days after transfer: add the following meds:
Pepcid 2x per day
Claritin 1x per day
After beta, another intralipid infusion

Fingers crossed for you, keep us updated.

ninami · December 2018

@sungirl39! Mu friend had a baby at RMA, have great docs too. Will see next week what my NK levels look like. What prednisone doses were you on? I'm on 20 now and its killing me. Its really hard to tell if its any of this stuff or just a more appropriate transfer timing and better prepped lining that works. What antibiotics did they put you on? I also did doxycyclin before the last failed FET. I am really not thrilled with the idea of IVIG, but figured big guns this time.

I oddly manage super high estrogen levels well, I guess my body is used to having it high on a regular basis. I did not get super symptomatic from hyperstim but my E2 levels are astronomical. My lining was 17mm when we did the fresh transfer in August that failed, all grade A and B embies.

Congrats on your pregnancy!!!! All this craziness is so worth it in the end

sungirl39 · December 2018

Oh wow, your lining gets thick. Mine can't even get to 7.5 on synthetic estrogen. I got to around 11 with the menopur. The antibiotic was doxycycline (with the standard FETS I only took it for three days, on the autoimmune protocol it was upped to five days), prednisone was a total of 20mg...10mg in the morning and 10mg at night. I HATE HATE prednisone, it made me feel awful...it was by far the worst med I had to take.

katie35 · December 2018

@ninami interesting! I can't remember where I read it at but I did see information on how sometimes Prednisone can cause a rebound effect on your NK cell levels. Hopefully the increased dose will do the trick! I willI keep my fingers crossed for you. I am kind of wishing now that they would have checked my levels before starting the prednisone so we could compare. How are you handling the increased dose? Are you noticing a difference in how you feel?

katie35 · December 2018

@sungirl39 I completely agree with you! The side effects from the prednisone have easily been worse than any other meds I have been on throughout our journey! They have me on 20mg a day. Luckily I think my body is getting used to it. I am definitely starting to feel better.

anared · December 2018

@ninami I have only done one FET so far but it ended up in a c/p with a PGS normal embryo and I had no known issues. After the c/p the RE did another blood test and turns out I have abnormal Beta 2 glycoprotein antibodies, basically it clots at the placenta and cuts off the blood supply to the fetus. Not sure if this is the same as NK, but it is worth bringing up with your RE as a number of different clotting disorders can impact a successful implantation.

ninami · December 2018

@sungirl39 my lining has never been a problem. I had bled for 5 weeks, 2 of them heavy on OCP and just 1 week on vivelle patches I'm already over 8mm, just hope its not over ripe but I guess it can't without progesterone. Clotting issues are probably the easiest to deal with, aspirin and lovenox hopefully will do the trick for you!

@katie35 and @sungirl39 I absolutely loath prednisone!!! It makes me feel horrible, retain water, agitated and plus a few. I never had any issues with stim meds, this is just the worst.But I also feel like I'm getting used to it, I started taking it early in the morning like before 8 am and it seems to be better.

@katie35 I did hear that too about a transient elevation of NK levels on prednisone, maybe that's what happens to me since they do give medrol for a few days during transfers. Will repeat levels in a few days, but to be honest with you its fine to take it empirically without NK levels. Given so much controversy on the subject and NK levels can vary a lot even in the course of a day. My reasoning is, if not harmful to the baby do it.

ninami · December 2018

@anared Sounds like my story with PGS normal embryo. They do say 40% fail so really hard to know the exact reason. Clotting issues are the easiest to deal with, hopefully aspirin and lovenox will do the trick for you. I've been testing for every possible blood issue and other than some single copy mutations of MTHFR and PAI-1, which do are not supposed to pose a problem unless both genes are bad, nothing. Dr. K did find I have anti ovarian antibody, don't know how significant that is, I make tons of eggs and in any case they are out now so should not affect anything. When are you trying again?

ninami · December 2018

@katie35, @sungirl39, @anared if you guys are interested I found this article that seems to have the most honest and reasonable discussion on immune therapy.

https://academic.oup.com/humrep/article/30/7/1526/653208

katie35 · December 2018

Hello @ninami Just wanted to check in on you. How did your second NK level come back? Did you end up doing the IVIG? Hope your holidays were good!

ninami · January 2019

Hi @katie35. Happy New Year. So, my NK levels just kept climbing up, I did transfer on 19th with grade AB PGD normal embie, had 3 rounds of IVIG for full measure and it didn't take. Oddly, the day before my transfer they checked my progesterone levels and it was on the low side, only 10.8 on PIO, which is very odd since previously same dose kept it well over 20. Lining was good at 11.5 so not sure what gives here. I still have 2 more frozen PGD normal and 1 "usable with caution" mosaic but may opt for a fresh retrieval just in case at another clinic. Maybe do ERA. Its an insane process. Where do you stand?

katie35 · January 2019

So sorry to hear @ninami

. You are right, this whole process is insane. There is so much that is still a mystery. Glad to hear that you still have a couple of embryos waiting for you and wishing you luck moving forward!

We had our first biopsy this morning for our endometrial function test this morning. We have one more on Monday the 14th. From the last biopsy, we have 2 weeks until we get results. Seems like so far away now, but I am hoping it will go quickly.

ninami · January 2019

@katie35 Are the biopsies for endometrial receptivity? Why 2? I'm thinking of doing another retrieval just in case and maybe try different clinic, although Cornell is considered top notch. I was getting pregnant on my own and with first natural FET, just miscarried. Now not implanting perfect embyos. Feel like I'm over medicated. My RE told me if we are doing a programmed transfer cycle that ERA not needed but seems like timing can still be off. Crazy and expansive process and feels like they still don't know a lot about it. hard to simulate god in a lab I guess. Let me know how your biopsies turn up and I hope this cycle works out for you!

katie35 · January 2019

@ninami For the endometrial function test, it looks to see if they can identify a reason for implantation failure. It is different from the ERA, in that it doesn't necessarily look at the same markers, but it is similar in that it can help to guide my cycle and what medications are given when. It also looks for a host of other things as well. It is hard for me to say if I recommend this or not yet, but if you are feeling that you are being over medicated, this might be worth exploring. My RE explained that this test can help to see if I am being over/under medicated and it can help us to customize a protocol to fit me. The mock cycle protocol they have me on is definitely different than any other cycle I have done! I started another thread a while ago and have been posting information as I have been getting it. It was hard for me to find anything on the EFT when I was exploring it so thought it might be helpful to someone in the future. Here is the link:

https://forums.thebump.com/discussion/12736355/endometrial-function-test-through-yale-university#latest

I have a link to a helpful article on there someone had found for me as well as the link to the Yale website. The Yale website actually lists out all of the things the test looks for. I hope this helps!

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