Immune/NK cells pred thread #31

[VenusStarr]

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!

@mintsugi I am so sorry to hear about the stress and disappointment you must be going through, it’s so cruel to have your hopes lifted snd the quashed like that, but I still have everything crossed that this isn’t the end for you. Unfortunately nothing in my direct experience, but I came across of stories about people with subchronic haematoma who go on to be fine and it’s nothing to do with the baby. Including that of Emma’s first embryo transfer from the BFN podcast, who was losing lots of bright red blood due to SE, but then went on to have her baby so it doesn’t mean the end, but I hear your worry with you having been here before.
Really thinking of you ❤️
Would your EPU re-scan you? What’s CRP saying?

Thanks everyone who gave advice on cyclogest application, I decided to stick with CRP instructions as it can’t be that wrong if a specialist with so much experience prescribes it that way and agree it’s much easier and less messy.

Hi everyone, hope you're all well ❤️

@comingsoon786110 I just saw you'll be on hydroxy all pregnancy, do you know why? Are you still on the Tacrolimus? How's it going?

@mintsugi sending you love, it's a real roller coaster. I hope the bleeding is nothing bad. Are you under an epu as well?

@Privatemedical246 first response have been withdrawn due to giving false positives, think there's a lawsuit ongoing in the UK. But I saw on Instagram last night someone in America had a false positive as well. Its crap though because I've always found them generally to be good. I hate clearblue and they're expensive knowing you'll likely get an evap 😒 apparently boots early response are good but not tried them yet.

@clhiu I can see you're doing both together but I do morning and night, I prefer spread out. When I was doing ivf I'd do one first thing, a lubion at lunch then one before bed. If you're still doing superovulation you'll have your own natural levels too so it's probably personal preference. Are you in a cycle now?

How are you @Lily1990 ? Did you manage to have a good break?

@star2022 I know you've said you're stepping back a bit, but hope you're doing ok.

Hope you're well @Ems123456789 @KtAgs @HopefulH @Zest11 @nottsgdns 💕

Hope you're cycle is going OK @Deerdancer34 and you're feeling OK. Its daunting to put yourself back out there. I'm terrified of trying again. Lots of love ❤️

Last cycle must've been stress related as I'm back to normal now, cd14 and am 3 dpo now. Dh is going for the sperm dna frag retest in October. We need to sort a normal analysis for ivf. Getting all our bloods done in October and I'll need a scan. Hoping we can start in November or December cycle. Not sure what my protocol will be yet, she wants all our tests back first. I'm still going back and forth on pgta testing. Dr S is adamant we don't need it but I'm 40 now, our embryos last year didn't make blast anyway. I can totally see the reasoning but I've also got lots of reasons not to do it. We don't need to decide yet but I'm scares to make the wrong decision.

Lots of love all xx

@VenusStarr thank you. That's worrying and makes me wonder if any of mine were false positive tests then! Mind you I've had high TNF Alfa and NK killer cells so something must be going on..thanks I'll check out the boot ones. I've seen some on Amazon called wonderffo that I might try too.

Hi everyone, sorry I’ve been quiet. I was away for 3 weeks, which was nice because it forced me to stop thinking about anything stressful.

Starting my final IVF cycle later this month, all being well with my baseline scan. Already preparing for it not to work (being 41) and am feeling ok about it actually, knowing that I’ve done everything I could to give my daughter a sibling.

@mintsugi sorry you’re in limbo at the moment, it’s not easy going through this. I will say it’s not over yet and things can be absolutely fine. I had significant bleeding with my daughter but it turned out to be fine. Will be thinking of you xx

@VenusStarr Disneyland sounds lovely! Glad you’ve had some time away as well. I’m not doing PGTA personally because it’s not a guarantee of success so it just feels like a waste of money in my view. Hope all goes well for you in the next few weeks/months xx

Hope everyone else is ok xx

@Newbeginnings22023 I got pregnant at 41 with my second and had her at 42 so fingers crossed it all goes well for u 😃 x also my first child was born just a week before I turned 40 so essentially 2 kids in my 40's yet I had miscarriages in my 30's. So bizarre. The drs just kept saying it's because I'm old which used to really p me off 🙄 but I have 2 healthy kids now so good luck, I'm thinking of u x

That's a definite head mess up @mintsugi . Really hoping for good news for you. At least you know what the likely cause is but that might provide little comfort.

It definitely sounds like you've got a plan @VenusStarr . Everything crossed for you.

In keeping with the pregnancies post 40, my pal had been trying to have her 2nd for 4 years and at 44 is pregnant and is due in Jan. She relies heavily on her faith to provide comfort as not sure I could try that long with no intervention.

We had our dating scan today. We're due end of March and we're having a girl.

Good luck to everyone embarking on new cycles - natural, superO and IVF. Xx

@KtAgs same here I don't think I could have waited after 40 for 4 years either 😬
Many Congratulations to you xx

@Sophi81 @KtAgs ahhhh thank you both so much for these positive stories, they really help. Many congratulations @KtAgs ❤️❤️
Doctors can be so brutal and matter of fact, leaving no room for hope xx

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?

@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 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 🥲🥲

@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.

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

@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

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

Anyone else suffer with insomnia on these meds? 😞

@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.

@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 😞

@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!

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

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.

@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!

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.

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

Hi everyone.

@KtAgs I saw a lovely lady from Petals twice and it did help yo a degree, but like you I got yo the point where I didn't have anything else left to talk about, and it was upsetting to be stuck in the same place. And over a year since I last saw her and I'm still in the same place, although more at peace with this ending with no living baby.
@Lily1990 I hope it helps you ❤️

@clhiu I'm so sorry SO didn't work. I hate that for some of us pregnancy becomes out of reach when for other the immune meds are the missing link. Doesn't make sense. I think crp would understand that cost of intralipids is too much so think they'd still prescribe steroids if that's your plan. Definitely follow your gut though.

Interesting about your response on a lower dose @HopefulH I hope this cycle is a good outcome. Are you doing it with Cherish? Dh has got his sperm analysis there next week.... 3.5 years after his first.

@Privatemedical246 I think the combination of pred and progesterone really impacts on my sleep.

I'm in the middle of ivf admin 🙃 were going down to crp in a few weeks to repeat dh's sperm dna fragmentation test and we'll see Dr E for our ivf protocol. Apparently Dr S is away most of October 🧐 I need to get my bloods sorted, dreading my amh. Need a scan with my ivf clinic too.
We're rattling with supplements, back on ubiquinol and started alpha lipoic acid and l'arganine. Hoping that by the time we actually start Ivf again they'll be in our system 🙏

Love to all ❤️