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Immune/NK cells pred thread #31

983 replies

VenusStarr · 13/04/2023 09:05

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

OP posts:
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Ems123456789 · 29/08/2023 13:47

@Privatemedical246 thank you.
re intralipids it depends on the amount. I had 500ml pure intralipid (that’s without the saline) and it took 5-6 hours. But I know some have less and it may be quicker.
Wear something comfy and take some things to do!

KtAgs · 29/08/2023 14:56

Really sorry to hear your news @Ems123456789 Take care of yourself as best you can. ❤️

Intralipids at CRP take about an hour. Sometimes they might be a bit quicker or slower. Drinking water helps I find.

Sending love to all. X

clhiu · 29/08/2023 15:14

@Ems123456789 I am so sorry about your outcome, it must be devastating. How terrible the NHS won't test unless it's at least 3 losses and ectopics don't count, that is such a barbaric rule, to expect people to put themselves through this 3 times before offering any concrete help, it's really frustrating isn't it? Did you consider private testing? My third loss was tested, but for the 4th one I had to insist, they tried to brush it off by saying they already tested one so I didn't need to test another one, which infuriated me as the 3rd was a one off chromosomal abnormality so there was no reason to assume the next one was the same or that it was definitely an abnormality again.

I am really sorry to hear about your grandma and how this is one of the many awful ways fertility struggles get in the way of us living our lives how we would like, so rubbish x

@Privatemedical246 at CRP it takes about one hour. I had one done at CRGH once and it might have been a higher dosage but that took over an hour an a half. Not much other advice, I was completely fine on them, like I hadn't had them, but bring something to watch or read while you're there as it's quite boring to just sit there with the needle in your arm.

Ems123456789 · 29/08/2023 15:40

Thank you @clhiu and I’m so sorry to hear re your losses.
I agree it is barbaric. I did try to research private testing but I couldn’t find any concrete information and by this point I was ready to get everything sorted as the waiting to get it resolved is just the worst bit sometimes.

What makes me laugh is they say that they don’t test ectopic pregnancies because they know what causes them but no doctor has ever been able to tell me why my first one was ectopic other than probably just bad luck. 🤦🏽‍♀️

Did you have any genetic testing on yourself or your husband for any issues? I’m also considering that.

Ems123456789 · 29/08/2023 15:40

Thank you @KtAgs appreciate your message.

clhiu · 29/08/2023 17:37

@Ems123456789 I am so sorry you're going through this and agree it's an absolutely terrible approach from the NHS, especially in relation to your ectopic. I also think it can vary depending on constituency, I heard of some having the first loss tested without quesion, more pit luck like we need any more!
DH and I only had kyrotyping specific to the two issues found in the two babies we lost and tested. If abnormalities are found in the tissues, the NHS will take your bloods and have them tested for that same specific issue, in our case triploidy and a trisomy 15, we are not carriers of either so they happened by accident. On account that they were two different abnormalities and the 5 embryos we PGT-A tested all had different abnormalities too, I would say it's unlikely our issue if of a genetic nature and that one of us may carry a specific translocation so haven't considered paying for additional genetic testing on ourselves. We have no such issues in the family as well so assuming that's unlikely to be the cause, but for some genetic tests may be very valuable.

AF is here so I booked my next and last SO scan, intralipids and also hyfosy. @VenusStarr any concerns with intercourse immediately after the procedure? I'm assuming it should be fine given it can be done in the same cycle, but wanted to be sure based on firsthand experience. They advised about possible discomfort and light bleeding afterwards, assuming that would be from the cervix being disturbed and nothing else?

HopefulH · 29/08/2023 18:16

@Ems123456789 I'm so sorry to hear this. It's so heartbreaking and I also agree it's awful the NHS don't have a standardised protocol when it comes to testing. I was told I could have our third loss tested but unfortunately it came back as inconclusive. We had karotyping tests done via Tommys recurrent miscarriage clinic which came back all clear. I've recently been diagnosed with endometriosis, and had a lap to excise. Have you had endo investigated? One of my close friends recently got diagnosed with stage 4 endo after 4 unsuccessful rounds of IVF and an immune protocol. She was told with the endo removed her chances are better now. I'm also so sorry about you Gran... I hope you can dive into doing lots of good things to help you recover mentally and physically xx

@VenusStarr Sounds very positive that you liked your IVF consultant. What was her name if you don't mind me asking? I've been looking at Create too as my AMH is very very low. It's been a year now since I was last pregnant which is scaring me. Worried my days of naturally falling pregnant are behind me, especially with being on the CRP protocol. I'm going to do three SO cycles and if I am still not pregnant I might try a few months on no meds at all!

Sending love to everyone x

VenusStarr · 29/08/2023 18:29

I'm the same @Ems123456789 I thought immunes were our answer and we've lost 2 on full immunes too. Its just frustrating that no one seems to know what else is going on as well.
I'm so sorry they won't test, it's so frustrating. Testing 2 of our babies helped us identify what might have caused the loss but also helped me psychologically. They're our only 2 that we named.
The doctor today feels that there is likely sperm issues going on, coupled with a poor egg reserve for me, which may or may not mean my eggs aren't good. But she said she knows we can make excellent embryos that are healthy, so there is hope. Nice to have a doctor who thinks there is hope. Just panicking now about funds...
I've got to redo my amh and get a scan for my afc then she'll devise my protocol, so I'll keep you posted.

I'm so sorry to hear about your Gran too ❤️

@Privatemedical246 intralipids usually is about an hour or so for me. The only time I've had issues is when they struggle to find my veins and they've gone in my hand which can be achey. Hope it goes well.

Sorry to hear af is here @clhiu I had some very light red bleeding after mine but no lingering cramps or blood after that so I'd imagine sex would be fine too. What day is your scan andwhat day do you usually trigger?

I've had my birthday present early, because I need to pack! We're off to Paris 🥰

OP posts:
VenusStarr · 29/08/2023 18:38

@HopefulH think we posted around the same time. I've wondered about endo too but we can't afford to investigate nor wait for the nhs. But I do have adenomyosis so there's a possibility I do.
She's Dr Felix at Create, she's also got experience in recurrent miscarriage, which has also reassured me.
My amh was 5 and I suspect its a lot lower now as it had dropped from 9 in 6 months and that wasback in 2020. She did say as they specialise in working with diminished ovarian reserve that they aren't phased by a low amh. Our complication is the recurrent losses and trying to work out why.

Your plan sounds good, what dose are you hoping to do for superovulation? X

OP posts:
HopefulH · 29/08/2023 18:44

@VenusStarr Wow Paris! Have a wonderful time. I hope you can switch off from all this crap and really enjoy yourselves.

Did your IVF consultant discuss endo with you at all?

I've done a low dose cycle at 2.5mg Letrozole this cycle. Test day is Sunday. Then I'm onto a new protocol using Gonal-F 150, without Letrozole or progynova as Dr Edge wants to test how responsive I am to the Gonal-F alone and how my lining behaves, as the main issue I'm having is a thin lining on the Letrozole cycles. I feel positive that Dr Edge wanted to really try to get the meds right for me, and listened to me regarding my concerns about additional Eostrogen when I've just had endo excised. I've also been diagnosed with Adeno. I think it's been caused by D&Cs to be honest.

Anyway, enough waffle from me. I really hope you have a wonderful birthday x

Ems123456789 · 30/08/2023 06:28

That’s interesting to know @clhiu regarding the chromosome issues and genetics. I’m sorry to hear of the chromosome issues with your losses. I’m wishing you the best of luck with your next treatment.

thank you @HopefulH for the information re endo. No doctors have ever spoken to me about it but I must admit I had thought about this in recent months as a friend has just been diagnosed. I have it on my list of questions for the recurrent miscarriage clinic. Thank you for your well wishes, I feel in need to find some joy and fun in the coming months.

@VenusStarr I am really pleased to hear you have a hopeful doctor because that matters a lot and as she says you are making good embryos which is a positive sign. She sounds good. I hope she will devise you a good protocol. Also pleased to hear you are off to Paris. How lovely!

clhiu · 30/08/2023 11:54

@VenusStarr Paris on your birthday, what a lovely surprise and so deserved! I hope you manage to have the best time and forget about all this for a few days at least, you earnt it!
Great to hear your IVF consultant was reassuring and positive, mine was rather negative, told me there was over 70% risk of aneuploidy at my age and that she was worried we couldn't get a single euploid out of PGT-A for me. She also started suggesting egg donor very early on, despite my OR being actually quite decent for my age, before we even tried one cycle, I found it very demoralising to be honest.

I'm actually happy AF is here, given I knew I definitely wasn't pregnant and want to get back on it as quickly as possible. I mist say however I am concerned about how light my period is and also it was 2 days late. It's not been this light ever since I came off the pill years ago, not even after the endo biopsy and hysteroscopy when I was advised it would be very light. One asset I have in my fertility arsenal is that my cycle is very regular and so long as I can pinpoint ovulation I have a very consistent luteal phase of 14 days. I know 2 days isn't a lot and wouldn't have through much of it had I had the usual level of bleeding, but concerned about that and that it's an effect of the Pred. I red it can cause amenorrhea and countless account of women for whom it messed their cycle completely. Suffice to say that if my response to Letrozole is poor this time or if the cycle fails and my period is still delayed or unusually light, I'm going to drop the immunes too and go back to full natural, probably a bit reckless, but what option have I got if they make things worse so that I don't even have a regular cycle or get pregnant in the first place anymore.

HopefulH · 30/08/2023 14:40

@clhiu That's interesting re Pred and your cycle. My cycles have never been heavy but have always been textbook 28 days. Since starting the protocol my period has always been late, sometimes by 4-7 days. CRP said it was fine and not to worry but it makes no sense why my luteal phase would suddenly be on average 18 days long. My periods have also got lighter and lighter, however I have attributed this to the fact that my lining has got thinner. All in all though not great. It's been a year now since I was last pregnant so feeling the pressure. Each loss takes so long as mine are always missed miscarriages and take a long time to actually happen. Where have you read re Pred and it affecting cycles? X

clhiu · 30/08/2023 15:22

Hi @HopefulH, I'm really sorry to hear about your losses. Did you have losses since being on the program and if you don't mind me asking, how many?
If we exclude the IVF chemical I had at the beginning of May, it's also been 13 months since I was last pregnant myself and since I last fell pregnant naturally - IVF took a very long time and I hugely resent it as given that it failed we could have probably got pregnant a few more times naturally during it, but we completely avoided trying - so I'm not keen to waste much longer on this immune protocol if I feel it's making it harder for me to conceive or messing with my cycle, especially given I'm 43.6mo and have no time to waste. I may have elevated NKC activity, but my primary concern remains egg quality and I cannot waste time on that.
I haven't got the link apologies, but I definitely came across at least one thread on Mumsnet and I believe something on the fertility network forum possibly where women reported it messing with their cycle, them not getting their priods for weeks and so forth...
On the CRP information leaflet itself it states the following 'Endocrine effects include adrenal suppression, menstrual irregularities and amenorrhoea' . I asked Dr Shehata on my consultation and said I had concerns about that and he completely brushed that off and said it was not a thing. https://www.crpclinic.co.uk/wp-content/uploads/2020/01/PD9-Prednisolone.pdf
But I know my body and I know my cycle very well so any irregularities paired with the fact I'm not getting pregnant are making me instantly suspicious.
Interesting what you said about the lining, because my lining this time was actually very good so one more reason to expect a heavy period, it was much heavier last time when I only took the Pred for 2 days because of a dental infection, but my lining was only 7.4mm.

https://www.crpclinic.co.uk/wp-content/uploads/2020/01/PD9-Prednisolone.pdf

HopefulH · 30/08/2023 17:51

@clhiu I've had three missed miscarriages, all after having my little boy, who is now nearly 5. He was born very small at 40 weeks gestation so it's been suggested CHI. My last loss I put myself on 10mg prednisone and aspirin once pregnant, but babies heartbeat still stopped. All my pregnancies thus far have been natural, but my last one was on a 2.5mg letrozole cycle. I've been on CRPs protocol since January and have done 4 SO cycles with trigger etc. the other cycles I've done myself. I've recently had a two month break to have a lap done. I'd really like to get pregnant now so I can see if Dr S's protocol does anything to help, but equally terrified of another loss.

Thank you for the info regarding Pred. I'm interested to see how this cycle goes on low dose Letrozole and if my period is delayed again, as I think I can definitively then attribute it to the pred!

When you say egg quality is your primary concern, what happened with your ivf rounds? Sorry, you've probably said before. Who did you do your ivf with? I've been looking into Create as I have a really really low AMH. I think go with your gut. It might be enough to start the meds once pregnant. I'm thinking I might give this a go at some point if I still can't get pregnant on the protocol.

clhiu · 30/08/2023 21:05

@HopefulH I am so sorry for your losses, MMC especially are so awful, finding out at a scan like that, thanks for talking me through your experience. I hope the next cycle works for you, I'll report back on the outcome of this cycle and what my next period is like if it's another BFN, this cycle could just have been a complete coincidence!
I did get a text from my GP surgery about an hour ago just telling me to contact reception to have the blood tests I did last week re-done in 2 weeks, no explanation whatsoever and I won't be able to call till tomorrow so now I'm worried. It was the 3-monthly blood tests CRP requires to continue treatment, luckily I was able to have them done at my GP for a saving of £200 vs CRP, but now I'm worried either there's something concerning that'll stop me from continuing treatment or they messed my test up altogether and I won't have the results before my next intralipids appointment next week, I guess I'll find out when I call them tomorrow...

I don't mind at all explaining my history.
My suspected problem of egg quality is down to a few reasons, even though it is one thing that can never be tested and therefore always a partial assumption.

  1. My age. Statistically, I'm at high risk of creating chromosomally abnormal embryos because the quality of my eggs is likely poor
  2. My history, 2 of my 5 losses were tested and confirmed to have chromosomal abnormalities
  3. The outcome of my single IVF round with PGT-A tests, out of 5 blastocysts, 3 had confirmed abnormalities and 1 tested inconclusive, only one was euploid
  4. We tested pretty much everything else under the sun that's known to cause recurrent miscarriage, including trombohpilia and DH sperm DNA fragmentation and all came back normal. Even my NKC came back normal when tested by my IVF clinic (bar slightly raised toxicity), but came back high in both count and toxicity when re-tested by CRP. So by exclusion, my IVF consultant said that although it's the only thing that cannot be tested, the likely reason behind my repeated losses, was poor egg quality and that probably even the first 2 losses I had that were never tested were likely abnormal embryos, but I will never know that for sure.
I did IVF with CRGH in London which has very good review and some of the highest success rates in the country, they are also very srong in genetic testing, something I was especially interested in, as given my history, PGT-A was the only reason for me to do IVF in that I didn't need IVF to get pregnant, but I wanted to test the embryos so I could put a normal one back in to prevent another loss. We signed up to do it in October last year, after my 4th natural pregnancy ended in the 4th loss as a second MMC. They way they work is that before the start of a cycle they always put you on Norethisterone for one cycle as preparation, to time your cycle better and also reduce the risk of cysts, that can lead to cycle cancellations so each round takes 2 months instead of one by default. By the time all that was done, egg collection was in December, PGT-A test results take 3 weeks and then you have to have a consultation to discuss next steps so that took us to January. As we only had a single euploid embryo, my consultant persuaded me to have an ERA, EMMA, ALICE and NKC test (both endometrium and boods) and also a hysteroscopy before moving to the FET so we wouldn't leave any stones unturned. The ERA test has to be done as part of a 'mock FET cycle', that is you have to replicate all the same steps and meds you would be on the real FET, but on the day in which you'd normally have the transfer instead they take the biopsy. As every cycle requires a prep on Norethisterone first, that set me back another 2 months. These tests found nothing except slightly elevated NKC toxicity (more borderline than anything) for which my consultant prescribed intralipids and low lactobacillus in my endometrial microbiome, for which she didn't seem to concerned and prescribed a course of vaginal probiotics (which I supplemented with some oral ones too just in case). Finally came the time of FET at the end of April, I was doing natural modified as I got pregnant very easily in the past so she was not worried about the transfer not working and seemed very confident also on account of all latest tests I had....sadly the transfer resulted in a chemical pregnancy, the one thing I spent all that money on to avoid - another miscarriage basically, that's what happened and I was devastated to have spent so much money, but also such a long time in which I could have just tried naturally, for it to end like that. I was given 3 possible explanations as to why the transfer of an euploid embryo would have ended in a chemical pregnancy, but nothing definite:
  1. The reason why I decided to go down the immune route after that - that even if my NKC tests were normal and I had intralipids, it's possible there might have been an even stronger auto-immune response that caused my body to reject the pregnancy and that in case of another embryo transfer she would prescribe stronger immuno-suppressants such as IVG
  2. PGT-A test are only 97% accurate and there are about 3% of abnormalities that don't get picked up by the tests so it might just have one of those Now, as someone who's already been on the worst possible side of the statistics so many times and with all I paid for those tests, I have a really hard time digesting that possibility, but it has indeed left me deeply disillusioned about doing any more such tests.
  3. And this is the worst hypothesis of all, which I tried my hardest not to entertain or I will go crazy, that my endometrium may have a preference for welcoming embryos that are genetically abnormal, but reject normal ones. This is apparently some new theory the scientific community has been coming up with as a possible explanation as to why some women my miscarry or experience implantation failure of genetically normal embryos in absence of any other concern. To me it doesn't even make sense as there are dozens of possible abnormalities so how is it that someone's body likes every single one of them, but not the normal ones, it doesn't make sense, but it's something I was told. If that was true then I'd never be able to have a child, even with an egg donor, surrogacy would be my only option.

Sorry, I realise I wrote a lot! I hope it's not too much, but that's my history and why I lost so long through IVF for a single EC cycle and a single embryo transfer.

star2022 · 31/08/2023 10:15

@Ems123456789 I'm so sorry you're going through this, it really sounds like you're going through a lot right now. I hope you manage to get some time for self care and look after yourself, sorry to hear about your gran too how awful :( sending you love x

@VenusStarr Paris! Sounds incredible, I really hope you have an amazing time!! You totally deserve it, and i'm glad you and dh always make time to still go away for breaks as its SO needed on this journey!! I did hear about something going on with first responses, i'm guessing thats why we can't get hold of them and the price on amazon was a lot higher last month! I'm also glad your IVF consultation went well, I think I've had Dr Felix before and she was so lovely. I remember requesting her specificially for my last 2 transfers too and i just felt like she knew what she was on about. I was quite happy with her but then one of the consultations when i was set my protocol, Dr Datta jumped in and changed it and I wasn't too happy about it. However, if I go back to IVF, I will probably try a consultation with Care this time as I don't know if i need conventional ivf or mild so i think having somewhere that offers both is probably what i need just so i have the options as i think when i went to create last year, they had tried everything they could it seemed.

@HopefulH @clhiu I'm so sorry to hear of your histories, thank you for sharing. Sounds like you've both also been through a lot.

I also feel the same way about these letrozole cycles and pred. Normally my cycles are clockwork (without meds) and since being on letrozole my period lasts like 2 days max. I have also had issues with my cycle length, which i questioned with Dr Edge because i seem to be ovulating around day 9 or 10 on letrozole (which is so early for me) but then for the last two cycles my period hasn't started until 18/19dpo when it should be around 13dpo. Dr edge was surprised when i told her this, because she said it would only be delayed if ovulation was delayed but all these months i've always had trigger so it does seem like pred is messing my cycles up too. When you take letrozole do you take it on the morning of day 2 or evening? I found taking it on the evening worked better so that i was able to have at least 2 days of full bleeding. As soon as i took letrozole, day 3 was nothing barely spotting which i've been a bit concerned about. I'm not on anything now so it will be interesting to see when AF arrives naturally this month. I think i need a good few months to regulate my hormones and cycle naturally.

HopefulH · 01/09/2023 09:22

@clhiu Bless you, it's so difficult and I can see why you are so frustrated with the ivf taking up the whole year. We all have to invest so much mentally, physically and financially for no guarantees. I get so mad at the world sometimes when it seems so easy for others, who don't have to financially ruin themselves to have the family they dream of. I can't entertain your last hypothesis either. It makes no sense that your endometrium would be receptive to abnormal embryos but not healthy ones. I think it's a positive your endometrium is receptive and hopefully it's about finding a healthy strong egg!

I had a vivid progesterone dream the other night at 8dpo that I got a positive test. Got excited as every time I've been pregnant I've had a similar experience but so far all tests are negative so feeling very bummed out. Every month we spend on trying to get pregnant freaks me out as we are getting more and more into debt and to be honest we won't be able to afford to actually have a baby if successful soon. It's a conversation my husband and I no longer have, we both just roll on to the next month but I know at some point we may need to draw the line.

@star2022 sounds like a good idea to try and regulate your cycle and see what happens off the drugs. There's no question the pred and letrozole do something to my cycles. I normally take the letrozole in the morning but I have taken on day 3 instead a couple of times as I seem to ovulate earlier on SO cycles too. Although I also think that my follicles generally get bigger than what they say is ideal when I ovulate naturally without trigger, so I've been questioning whether all the interference is a good thing. I'm gutted this cycle seemingly hasn't been successful because next month I know I'm onto the gonal-f and I'm worried about it all. I like the idea of falling on a more natural cycle!

@Ems123456789 Hope you are doing okay? Xx

star2022 · 01/09/2023 09:56

@HopefulH I'm so sorry you've had a negative, I've also had those dreams where you dream its positive and get excited. It really is heartbreaking what we have to go through month on month and finances are also an issue for us which is why we are needing to take some time off without spending on treatments. Its a really difficult convo. What was the basis behind being on Gonal F? Will you just be on that instead of letrozole? I wonder why I wasn't offered that, as my follicles were growing too quickly on letrozole too, one of the months I even had a follicle at 30mm before trigger and wondered why I didn't naturally ovulate with a follicle that large?! Its all so baffling! Are you trying for your first? And which cycle of SO are you going on to? I really hope gonal f works for you!

Dh and I had a massive convo last night talking about next steps, lots of tears and frustration. He wants to go on a lads weekend break which of course means lots of drinking, i've been anxious as we have done so well not drinking for the last 12 months and now it's as if it will all go down the drain. I understand what he's saying as being healthy hasn't gotten us nowhere - 4 failed ivfs, 1 chemical, 6 letrozole cycles later and still no joy and we've literally put our life on hold for the last 4 years, but its just so hard to find that balance of not jeopardising our chances further by being wreckless and knowing that we could be close!

We have decided however, to just try naturally now going forward no meds, no treatments, only acupuncture for me. Save the money we would have spent on treatment and use it to enjoy ourselves and have fun again so he's booked his lads holiday, so I might too 😂 Just seems like such a risk to go back to trying naturally but i've never actually tried naturally when i've been in a good head space mentally so hoping we get some sort of miracle once i get myself back to who I used to be. Day 1 of my self care journey begins today..I may still stick around in this group though and i hope to see some positive stories here soon!

I also may look into taking DHEA at some point as my testosterone does seem low and i've seen some success stories with it to help with egg quality and lots of people who have had success after years of infertility.

Does anyone else have any feedback around DHEA?

@VenusStarr Have you considered trying a natural modified ivf cycle with Create? Focusing on fewer eggs but better quality? I think if I had to go back to ivf at some point, I would probably consider this protocol where they give you stims every other day to allow slow growth of follicles and potentially better quality. I know you're similar to me with your experience in that high dose stims doesn't work for us. PS. Hope you have a fab time in Paris and Happy Birthday! 🎈 x

Lily1990 · 03/09/2023 14:08

Hi ladies, I hope you’re all doing well! I’ve just started bleeding from my chemical pregnancy (at 5 weeks 2 days) which is my first loss on Dr S’s plan (and 5th loss overall). I’m feeling unsure of what to do next and wondered if you might have any advice or insights? I’m thinking about 3 potential options.

1.Try again (naturally) on an amended treatment plan with Dr S. I’ve read he prescribes hydroxy to people who miscarry on pred so maybe this will help? Also i was only taking 15mg of pred which they said was suitable as I’m quite small but maybe they’ll increase as the standard dose is 25mg? This would be the cheapest/easiest plan but worried something else is going on and it will happen again.

2.Do more extensive tests with Dr Gorgy (eg uterine NK cells, LADs, uterine infections, EMMA/ALICE etc). This would be expensive and delay TTC again (as I believe uterine NK cells must be tested at least 6 weeks after the last miscarriage) but it may give a more complete picture and avoid future losses. Partner not keen on this option though due to costs.

3.Try IVF with genetic testing. We usually conceive quite easily so have been told IVF is a waste of money and time, but I’m wondering if having more control over the process (hormones etc) and only putting in genetically normal embryos will reduce the risk of miscarriage. We may be able to get one round free through my partner’s health insurance.

To note, 4 of my 5 losses have been before 6 weeks and the other (first one) was at 8.5 weeks but found out at 12 week scan. I have PCOS (taking metformin) and high NK cells (was taking pred & everything else on complex plan). I’m 32 and been taking coq-10 for a year so wouldn’t necessarily expect egg quality to be poor unless it’s badly affected by my PCOS. And partner sperm/dna frag all fine.

If anyone has any advice or insights I would be so grateful. Will also talk to Dr S soon but expect he will tell me to go for option 1.

Xx

mintsugi · 03/09/2023 21:53

Hi ladies,

I have been lurking on this forum for a couple of years. It's been a really helpful source of support and information through a difficult journey.

I had a positive pregnancy test last Monday, my fifth pregnancy and first on the CRP plan. It's been a mixed bag so far and I thought to reach out for any insights and advice.

I've been TTC since 2020, here's a quick summary:
Sep 2020: MMC at 7-8 weeks after bleeding, requiring SMM a month after diagnosis
Jan 2021: MMC at week 6 after bleeding, likely chemical pregnancy. Natural management a short while later.
Oct 2021: MMC at week 8 after a good 6 week scan. This was after investigations with Claire Mellon and CRGH that showed low AMH for me and sperm DNA frag for OH. I was put on cyclogest from trigger (superovulation cycle and I conceived on first one) and 75mg aspirin from positive test. Retained tissue required 2x SMM with 1x MMM in between the surgeries.
Apr 2022: MMC at week 5 after heavy bleeding, likely chemical pregnancy. Retained tissue required failed MMM and eventually SMM. This was with St Marys following a hysteroscopy and a septum resection, where I was put on cyclogest, daily heparin injections, and 75mg aspirin from positive pregnancy test.

I discussed treatment options with Dr Shehata but decided to try embryo banking first. It took us four cycles to get 2 embryos, one PGTA tested and the other not, that we have frozen as an insurance policy.

We started trying naturally earlier this year on Shehata's plan but weren't having any luck. A scan with my IVF clinic showed some adhesions and needed another hysteroscopy last month.

I then did a round of superovulation with CRP but took 5mg letrozole instead of 7.5mg. My scan on CD10 with Dr Shehata showed small follicles and poor lining so he advised the cycle to be a dud, suggested skipping any meds, and to try Gonal F along with letrozole for next cycle. My Clearblue early response pregnancy test on CD 24 was also negative. But strangely a week later, after my period didn't come, a repeat test was positive on CD31.

I got intralipids and started the plan with pred, cyclogest and aspirin straight away. But I've had a bit of spotting today and it's freaked me out. I had assumed so far it was just late conception but am now wondering if it's a chemical pregnancy.

@Lily1990 I think we're at the same stage in the pregnancy and also the fifth one for both of us and first under CRP. I hope you're doing okay. Out of your options I went with no.3 before Shehata's plan but it wasted a year and I think we would have had more success at lower cost trying naturally. Let us know how your discussion with Dr. S goes.

@KtAgs @NessyT91 hope your scans are continuing well! Did you experience any early spotting with CRP pregnancies? Trying to decide whether to hold on to hope for this one or to brace myself for the worst.

mintsugi · 03/09/2023 22:08

@star2022 I had tried DHEA supplementation during embryo banking rounds, and it led to worse outcomes for me. But in fairness my testosterone levels were perfectly normal and the doc had said DHEA was unlikely to help in my situation.
I have a stash of unused DHEA that I purchased OTC in the US last year (way cheaper and easier than as a prescription med here). If you want to try it I'd be happy to post it your way and reduce my pile of spare meds.

StillTrying10000 · 03/09/2023 23:20

Hi @Lily1990 I’m sorry for your loss again. I was in a similar situation and decided to do IVF just for the genetic testing. After all I’d been through IVF was a joy, it’s so fast, I only had 10 days of meds before I was at egg collection, personally I really got on with the drugs (they made me happy, but I know this isn’t the case for everyone) and joy of joys we didn’t have to have scheduled sex anymore whoop!
Anyway, I still had 5 more MC on IVF so it cost a lost but pro’s are- about 50% of my embryos were genetically dodgy so that would have been a lot of potential extra MCs to have gone through before we found the correct treatment plan. It meant over the year it took for us to try each of those IVF transfers, changing my drug protocol each time I aged but my embryos stayed nice and young. My 6th cycle was a success and now I feel I have time before TTC for a sibling because I have some time healthy embryos banked. So it may not be an easy fix but it’s certainly worth considering. Any questions about it feel free to DM me x

Lily1990 · 04/09/2023 06:25

Thank you so much for your responses @StillTrying10000 and @mintsugi, very useful and really appreciate it!

@StillTrying10000 I might DM you a question about IVF if that’s alright. Amazing you got your baby on the 6th go, that inspires me to keep persisting!

@mintsugi I’m really sorry you find yourself in this position. I know spotting can be normal in many pregnancies so it doesn’t necessarily sound like a chemical. Have your tests got darker and stayed dark? Perhaps it would be worth getting bloods done? In the past when I was spotting I was told to take extra progesterone and rest. Really hoping it’s not a chemical. X

comingsoon786110 · 04/09/2023 15:17

@Lily1990 so sorry to hear about your loss on the plan. I had one on the complex plan (25mg of pred, hydroxy and intralipids and the he added GCSF injections to my plan. This worked for a lot of people on here but didnt work for me and I miscarried again in April. I am now on tacro and being monitored for my levels and then he will advise me to start ttc.

Every time you have a loss, he does advise to add something else to the plan or he says to stick to the plan as it might have been chromosomal.

I always went for the additional medication option. I have also tested positive for having plasma cells present in my uterine lining and taken doxycycline for it. If you dont want to do the testing for infection you can get them prescribed for you via superdrug online pharmacy and take them on your own part. I know a lot of people on here who have done this to save themselves time and money.

Hope this helps!! Xx