Immune/NK cells pred thread #31

Hi @mintsugi thanks for checking in. Very pleased that all went well your end, it’s lovely to hear positive stories xx

My baseline scan is next Friday so I’m just continuing my supplements until then, see what happens. My DH had a prostatitis flare so he’s on antibiotics once again, hoping that’ll help clear things up for him.

@nottsgdns I know exactly how you feel and I think we all know when enough is enough. Wishing you all the best for the future. We are all so strong and have gone through so much xx

@TheWeeLittleDonkey thanks for sharing your story. Each person goes through such a unique journey that it’s hard to find a common denominator on what could help with infertility. Some try naturally for years until it works (or doesn’t) others have success with IVF, some don’t, some swear by Dr S’s interventions. It’s really hard to know what works until you’ve tried different things. Hope the procedure really makes a difference for you xx

Hope everyone else is doing well. @VenusStarr wishing you all the best with the testing and new round xx

Hi all, I haven’t posted in here in quite sometime, but I thought I would incase this helps anyone.

Between October 2020 - Jan 2023 I had 5 miscarriages. I have no children. After the 5th we decided to take time off trying because it was all getting too much. We also had long gaps in that time while waiting for results and appointments etc. it’s awful how quickly the time goes isn’t it…?

I’ve had counselling which has been so incredibly helpful, and I have spent time just being happy in a couple with my husband which has really helped my headspace.

At the time I was 31, I’m 32 now so I will caveat that with saying I definitely had the luxury of time which I realise was lucky and I can fully understand why some people don’t feel they can take a break.

Anyway, the reason I am posting is because I had a hysterscope yesterday under a different doctor, but a very well known one in the field. I have had so many ultrasounds, some when pregnant, some when not and no one has ever seen anything wrong with my womb from them…

But the hysterscope actually found I had a septum which is something I was born with. I was told by the doctor yesterday that for me it might well explain all my miscarriages because the reason mine was hard to see on ultrasounds is because it was at the top of my womb, however she did say it was effecting the shape and she’s now fixed it so it’s domes as it should be. It was also blocking my tubes and making the entrance very small which she says can cause miscarriages.

The reason I wanted to post in here is because 1) I wanted to post before I tried again. I didn’t want this to be a post where it was like “well this will definitely fix it, I’m now pregnant” etc, because let’s be honest, it might not. I might still carry on having miscarriages… but 2) and this is more important: miscarriages 3 and 4 for me were under Dr S.

I know he has helped so many women, I really do. I’m sad I wasn’t one of them.

But for me the NK results were boardline on his own scale, and when I had the first miscarriage under him he tried to up all my medication. I felt really uncomfortable with this because my results had been borderline and not cut and dry. It felt like the costs were spiralling and I wasn’t convinced that it was the cause for me.

After speaking to two further very, very well respected doctors in this field and showing them all my testing results, they both independently of each other said that for me it was highly unlikely that NK cells were causing this.

I wanted to post in case anyone else has a doubt in their mind. Please advocate for yourself. Please don’t be scared to get a second opinion. You’re not insulting anyone. There are so many fantastic miscarriage specialists in this country were truly lucky.

As I said, I know Dr S has helped so many people, and I haven’t come here to say he’s shit and no one should believe him because there are so many women in here who have posted testimony to him helping them. I met some of them in his clinic who were clearly really helped by his work. I was unlucky I wasn’t one of them. But I also didn’t feel heard by him when I told him my history. I felt dismissed and when my results came back borderline for me personally it didn’t give me hope that his medication would solve my problem.

Research into miscarriage is chronically underfunded. It’s so incredibly unfair for woman like us that a lot of this is all a guessing game.

For me, this is the first time in 3 years I’ve actually had hope. I’ve actually had someone say to me “look I have found this thing that’s been missed, and I have fixed it for you”. If nothing else it’s given me a huge feeling of relief that I’m not to blame, which obviously I wasn’t… but you know how it feels…

I just wanted to post this incase there is someone reading this who has a slight doubt. And to say that a second opinion is always worth it.

Hopefully for me this will help. Maybe it won’t… who knows… everything about pregnancy is just so fragile.

@nottsgdns thank you for sharing your story I hope you are okay and definitely sound at peace now.

@mintsugi glad your scan went well. I'm now confused. I carried on testing and now at 13dpo getting faint line on a wunderfo and now a really faint line on clear blue (I hate blue line tests though I find them so unclear) and now don't know whether to restart my meds in the hope it will progres. Or just give it another day or two and see if the lines get darker/obvious then restart the meds. I'm thinking to continue pred as that doesn't effect period whereas cyclogest can delay my period coming and I don't want to do that if it is a chemical again.

@nottsgdns sending you positive vibes as you move forwards and onwards with your life. I hope you can feel super proud of everything you have endured and coming out the other side - knowing you did everything. Go and enjoy life! Xx

hey everyone! this is probably my LAST EVER message on pred thread!

i ended up getting a positive on testing day 10dp5dt after getting a negative at 7dp5dt. But regardless, I promptly got my period and it's all over for me.

I am adamant that that's the end - for IVF, for immunes and for even trying naturally - because the longer I stay in this "trying mode" the more I am putting my life on hold and after 4 yrs, I need to let it go (for me, not suggesting 4yrs is the limit for everyone).

thank you everyone for all the support and tips. I am really rooting (routing? not sure) for all of you. your dedication is super impressive and I think you are all wonderful people.

BEST OF LUCK XXX

Hi all,

Thank you for the kind and supportive posts @clhiu @VenusStarr @Newbeginnings22023 @KtAgs @Privatemedical246 @HopefulH.

The bleeding was light and stopped within 24 hours. But it sent me for a spiral and I went to CRP for a repeat scan just 2 days after the EPU scan. Dr Edge was really reassuring, the hematoma looked much smaller, and hearing the heartbeat made me feel so much better.

I have a scheduled scan and intralipids booked for this Friday. It's been a tough week where I've been acutely aware of every pang and sensation, and every time I pee I'm checking for blood. All my miscarriages were between 6-8 weeks so this period was never going to be easy. There hasn't been any further bleeding or cramping though so I'm keeping my fingers crossed for some good news on Friday.

@Privatemedical246 clear blue early response tests were negative for me with this pregnancy, meaning I didn't start on the immune plan until after a missed period. But my blood hcg was tracking normally so either it was a false negative or the tests aren't as sensitive as they claim to be. I've heard good things about the boots early response ones. And on side effects, I'm also having awful insomnia on pred made even worse by the exhaustion.

@VenusStarr good luck with the IVF cycle. Did you choose to wait until Oct for the tests or did the clinic set the timing? I had planned on doing PGT testing but we got such few embryos that I decided not to tamper with them any further and just froze them as is. We had 2 cycles where 4-5 embryos all arrested on day 4. The clinic said it was highly unusual but wouldn't suggest a different approach either. I found the process very frustrating and after getting 2 embryos over 4 cycles, thought the process would move faster with superovulation. I know you've had good success with embryo banking before so I hope the cycles in Oct / Nov go really well for you.

@Newbeginnings22023 how was your baseline scan?

@KtAgs that's fantastic news, congratulations! Success stories on here give us all hope. Have you started tapering the meds yet, how are you finding it?

@Lily1990 I had private therapy after my 3rd loss. It took 3 attempts to find a therapist I felt comfortable with. I was in a very vulnerable place and aware of the risk of iatrogenic harm. The previous 2 I spoke to said some dismissive / insensitive things in our initial 'chemistry' conversation. But the therapist I went with was really wonderful and think I had 15 sessions with her, which helped me build myself back up. We covered the losses and the grief, but also broader aspects of my life and family that were revealing and helpful. I'm also doing acupuncture, I've had a loss last year while on acupuncture but I think it played a role in me conceiving this one when my follicles and lining weren't looking great. We did 2 sessions to get this cycle to work, one to grow the follicles, and one to trigger them, after CRP wrote off the cycle. I also like my acupuncturist and just find it nice to have the support and stress relief, if nothing else.

@clhiu really sorry the superovulation didn't work. It is really demoralising. And completely hear you on the cost and inconvenience of the CRP visits every cycle. It took me a while to conceive until a saline scan showed I had adhesions that hadn't come up on a normal scan, making conceiving physically impossible. My period had felt different for a while so I got the saline scan done. A surgery followed by 5mg letrozole and acupuncture to trigger seemed to work for me this time. I don't think I could've stuck with the CRP plan otherwise, it is just too consuming and costly.

@HopefulH good luck with this cycle. When is test day for you?

Hope everyone else is doing well, sending love.

Thanks so much @KtAgs @HopefulH @clhiu for sharing your counselling and acupuncture experiences. I’d never heard of Petals before but I’ve now filled out a form for free miscarriage counselling, hopefully I’m eligible and it’s helpful 🙏. Gosh we have all had a rough time though 😞. I’m so sorry for all of your losses.

@HopefulH I’m not sure if the immune meds can reduce the likelihood of a pregnancy, but for me personally letrozole seems to reduce the likelihood of conceiving (although it makes me ovulate earlier and my normal ovulation is very late). I have no idea why it seems to reduce my likelihood of conceiving as the evidence shows it increases the likelihood on average, but I guess each person responds differently. Trying for so many cycles is brutal, I can totally understand why you are feeling like this.

@clhiu must be so hard sharing your office with a pregnant person, I really feel for you ❤️ my male officemate recently announced their partner was pregnant and I’m dreading conversations around that, but it would be so much worse if it was a female seeing the bump etc.

Sending solidarity and strength! xx

I totally hear the concern with dropping all the immune stuff @HopefulH when the point in going there in the first place is to prevent another miscarriage. I think it’s finding the real fine balance between being able to get pregnant and if you do, it being able to stick. I’d personally want to be on steroids and intralipids, but only upon a positive pregnancy test. I had intralipids before my FET and that didn’t stop it being a chemical anyway it’s just money I haven’t got every month for nothing. With the Pred I’m thinking I may start it a couple of days later once I’m sure I definitely ovulated, the problem with that is I don’t think CRP have would want to prescribe it to me if I don’t do the intralipids too.
It disrupts my sleep significantly and causes me palpitations, all things that on top of natural stress and anxiety in the 2ww definitely makes me feel stresses and unwell. I also believe corticosteroids by definition are supposed to rise cortisol levels and that isn’t good for fertility. So so hard to know the right thing to do! I also feel the people who have success have taken a long time to get there, time I haven’t got the luxury of at 43 so I’m not going to chance it any longer and go with my gut instead.

@clhiu sorry you've not had any luck on SO either. Does the Pred make you feel stressed? I find I just feel wired and a bit manic - but imagine this is upping my cortisol levels. But then others seem to manage to get pregnant on the drugs still. I'm not sure. I'm terrified of not taking the meds and then regretting it if we have another loss.

I've taken the low dose letrozole with no trigger - but I'm presuming I'm ovulating as having a temp rise and there are no cysts left over next cycle. I've been having scans and intralipids with another clinic. CRP do not know. I think sometimes you have to listen to your gut! I hope you have better luck trying naturally. I think just having the break from the clinic might help with stress, as it certainly has for me - even though I've still been on the meds. I'm really praying for a miracle this cycle. I just want to see if this immune protocol can work for me - and it's so frustrating not being able to fall pregnant!

Thanks @Privatemedical246, I’m planning to scream really hard into a pillow as soon as I get home. It doesn’t help sitting across my colleague who’s 22 weeks pregnant, rubbing her belly all day and whizzing through her pregnancy like it’s nothing.

@HopefulH I totally get the apprehension if nothing came of 8 cycles, that sounds like a lot. I still hope thisnis the one for you. I’m done with it after 3 considering how easily I got pregnant in the past, the maths don’t stack for me, it may work for others, but I’m not going to repeat this any further. When you say you’re doing SO yourself without CRP you mean you’re just taking the Letrozole without scan and trigger or you’ve found a different clinic or the NHS to do that for you?
As to your question about whether anybody thinks Pred stops them from getting pregnant in the first place that’s 100% me. The level of stress it causes me to be on it cannot be good to favour implantation plus the increased cortisol levels cannot be good for egg quality going over and over again in the long run. In my next attempt I’d only be starting it if I get a PPT, besides I don’t think CRP would want to prescribe me more unless I do the full plan inclusive of pre-ovulation intralipids. Not sure about the latter, but that and Pred are the only immunes I’m on. With me it’s either those or the superovulation and I’ve triggered when eggs were not mature all 3 times, despite having multiple follicles in the correct range each time. So I’m dropping both for the time being. I definitely heard other people on this thread not being able to get pregnant anymore since being on the plan so I’m not alone.

Hi everyone, sorry I've been awol... sometimes I find it all too much and have to step away from all social.

@KtAgs congratulations!! This is wonderful news and gives us all some hope.

@Privatemedical246 I hate pred... I can't sleep and I become wired and anxious as the 10 days go on. I also think I suffer from withdrawal coming off them abruptly so this month I think I'm going to try and wean off a bit more gradually. But yeh the meds are hard when you've been on them for so many cycles!

I've just started with a new Chinese acupuncturist and have noticed a big change in my endo/adeno pain, which is normally all cycle... so I will see what happens. I'm taking Chinese herbs now too.

I also have counselling with a baby loss charity, which is basically having an informal, in person chat with a lovely lady who has actually experienced loss - so it's really helped me over the years. I had counselling via a GP referral prior to this and it was awful! So many things said that should never be said to someone who has lost a baby.

I'm just post ovulation so on day 1 of the Pred and cyclogest and feeling very meh about it all. I've done two cycles now by myself as couldn't face paying for CRP SO again (I've done four cycles with them, all of which have not gone well). My pre-ovulation scans have been better both months on 2.5mg letrozole, and I even had two dominant follicles on the low dose this month with a thicker and healthier lining. I attribute this to not having the stress of CRP SO... I think I may sack off SO until after Xmas now and save ourselves the money.

I was wondering if anyone thinks the pred/immune meds might be stopping them from falling pregnant? This thought keeps popping up in my mind, now it's been 8 cycles and no positive.

Hope everyone else is doing okay?

@mintsugi How are you doing? I hope the bleeding has stopped now.

Sending love and hope to all! X

@clhiu I'm so sorry to hear that. It is so heartbreaking and frustrusting when you are spending all this time and money and see nothing positive back. Sending love. Defo shout, swear and get angry! It is so unfair!

@Privatemedical246 yes me absolutely. I’m not having any other noticeable effects from it other than severely disrupted sleep and erratic heart palpitations, last night especially after 10 days on it was horrendous.

@Lily1990 I’ve started private counselling after my IVF failure in May and 5th loss. It’s hard to know if it’s helped at all so far because I’ve kept going and that’s what’s been keeping me sane so far anyway, plus it’s a long process. I will only know if it’s really worked the day I wake up and can serenely decide to give up, something that hasn’t happened so far. I also decided to try acupuncture at the same juncture, but didn’t make any difference to my next cycle so after 8 session I decided to save the money and end it, plus I didn’t find it relaxing as it was supposed to.

So the 3rd SO cycle + immune has ended today in another BFN. Despite 3 good sized leading follicles, god lining and ovulation confirmed. I also opted for the hyfosy and both my tubes are clear as day. Due to lack of funds and patience, but also a complete loss of faith in a process that was supposed to help me fall pregnant quicker than naturally, I decided to completely sack off any more SO and pre-ovulation intralipids, no more stressful trips to Epsom and 800 down the drain every month for absolutely nothing. We’re going back to trying purely natural and if we succeed I’ll be in touch with them for Pred and pregnancy intralipids if they’ll still have me, but that’s about it. This sucks so hard 😞

@Lily1990 I had counselling after my 2nd miscarriage and had a 3rd whilst at the end of that course of therapy. It really helped me but I was so angry by the end, I didn't want to talk about it anymore. My miscarriages were 19w, 11w and 10w so felt I'd been pregnant for such a long time. I'd also tried reflexology, Buddhist meditation - and was having regular massage for physical alignment for 60 minutes a month. I just felt out of whack all over. I have heard petals is helpful https://petalscharity.org/.

The side effects of the meds are tough @Privatemedical246 - the pred for me was intolerable but I've always liked hydroxy.

Anyone else suffer with insomnia on these meds? 😞

Thank you so much @Privatemedical246 you’re right about doing something nice for yourself which makes you feel good! Your PT session sounds perfect, what a bonus having someone who understands what you’ve been through and can empathise. That was one factor drawing me to acupuncture, will have a think! xx

@Lily1990 that's good he adjusted your plan. The waiting is horrible! I'm sorry to hear you had such a bad day. It is totally allowed to do that! I haven't had therapy but I have been going to a lovely PT weekly to try and focus on myself. Through discussions she has had several miscarriages around the same time as me over the last year and I have found it nice to talk to someone who understands/checks in on me. I tried accupuncture for a few months and it was relaxing but didn't notice any chances and no successful pregnancy on it so stopped that and swapped the money I was spending weekly for the PT sessions. Be kind to yourself xx

Hi all, hope you're all doing well!

@KtAgs massive congratulations, that is wonderful news!

@VenusStarr when is your IVF scheduled for? Tricky with PGT - does it partly depend on how many day 5 embryos you get? I think when we eventually get round to doing IVF, we will do it to rule out genetic issues for that transferred embryo. And partly as a diagnostic test to know whether chromosomal issues have been contributing to our losses, as we have never had any tests for that. How much extra does it cost per embryo? My break was nice thanks but parts of it were ruined by the chemical and the disappointment and horrible feelings that come with it. Ironic as we booked this holiday to relax after all the stress from TTC and loss over the past year!

@comingsoon786110 aww hope you're okay, I also feel stuck in a rut. What is your situation atm?

I went to see Dr S last week after my chemical on his plan and he has added Hydroxy to my meds and upped my pred from 15mg to 20mg. Although I was happy he took it seriously and changed my protocol, I felt awful after the appointment. Felt terrified about the side effects of Hydroxy (especially as they told me to book an eye test etc) and generally just questioning whether I need to be on such a crazy amount of meds or whether my losses have actually been caused by something else that hasn't been tested. Also felt so disappointed that we can't try again until late Oct/early Nov because have to wait for the hydroxy to kick in. And later that day a colleague announced their pregnancy and it was just awful timing! I took the next day off work and basically cried the entire day. Feel slightly better now and thankfully haven't (yet) had horrid side effects of the hydroxy.

Has anyone had counselling for miscarriage or had acupuncture for miscarriage and TTC? I feel I need some more support emotionally!

Love to you all xx

@comingsoon786110 I paid for the NIPT and I'm having the nuchal scan with the professor but mainly because of the anatomy scan. It was the best scan we had when we had it in our first pregnancy.

Congratulations @KtAgs soo happy for you!! Did you go for the nuchal testing at CRP and found out the gender then or did you do a separate test for that?

@Privatemedical246 if you are 10dpo and tested negative I would stop taking the meds. Dr S normally advises that if its been less than 2 weeks on pred then you don't have to ease off slowly (dropping by 5 mg every 5 days or so I think). But as you said you tested on 10dpo, I think you should bring the meds to a stop now as progesterone will definitely delay your period bleed. With all my CP's I would start testing negatively slowly but my miscarriage bleed would not start until I was off progesterone. Sorry to head about your negative though, I know how depressing it can be.

Its so difficult to see people already announcing May pregnancies!! Just feel so stuck in a rut 🥲🥲

@Privatemedical246 I’m really sorry to hear it’s a negative.
My understanding from CRP is the idea is to take the meds for as little as possible if not pregnant, I think they just say 10 days as they expect you to start them on ovulation day then test on day 10, but if you started later than ovulation I think you should stop regardless in case of negative test even if you haven’t taken them for the full 10 days. I don’t believe there to be any specific merit in taking them for 10 days if implantation wasn’t successful.
But really sorry to hear this cycle didn't work out for you, such a disappointment month over month x

Congratulations @KtAgs!
Please can I ask for everyone advice around the cyclogest and testing. Under NHS I end up started cyclogest about 3 or 4 dpo as waited for confirmation I had ovulated. The testing says after 10 days. So I've done that on 10dpo and is negative. Do you stop taking the meds such as cyclogest, pred aspirin or did you wait until you'd been taking the meds for 10 days and then test (which would be my period due date anyway?) I guess I'm just concerned that waiting longer will delay my period?