Immune/ NK cells - Pred threat 27

[LaurenAB94]

@Bambii @Daffodil21 @Eeviee @Everhopeful35 @farfromperfect82 @Eeviee @Everhopeful35 @Hazlet2 @farfromperfect82 @HoldingOn2Hope @Jellystar23 @KtAgs @Lalaifa @LookingforAnswers86 @Marabouchoc @LRL12 @MrsMargot @Naticle @NessyT91 @NessyT91 @NICK7nick7 @rainwillmaketheflowersgrow @Rebecca9876 @Sophfr17 @Tinpo @VenusStarr @Wheresmyrainbow @Whyisthistakingsolong

Hi @Hazlet2 - dr S’s plan says progesterone til 16 weeks. Not sure about Clexane because he’ll only prescribe that if there’s a specific blood clotting issue found but I did think it was normal to have those all the way through from what I’ve heard from other people.

Hi @Hazlet2 I don't currently need fragmin, but Dr S has put it in my plan for when we start ivf and I've just checked my paperwork and it says until 12 weeks.

I do know someone who has aps and she was on it until about 24 weeks, stopped then restarted after birth for 6 weeks and another who was on it all the way through until 6 weeks after birth. Probably not that helpful, but it seems quite individualised.

Hope you're doing well xx

@Tinpo @VenusStarr Thank you ladies, that's really useful to know - you're right, seems like everyone's plans are tailored so I'll just trust what the clinic are telling me. Thanks again for your help and I hope you're both well xx

I can’t believe I’m writing this. After a perfect 10 week scan with Dr S last week, we had our nhs scan today and our baby has no heartbeat. This is the first pregnancy I’ve had on a treatment plan and yet the baby has died earlier than all my other losses. I don’t understand, I’m so angry and upset. I think this is the end of the road for us.

Oh @Tinpo I am so, so sorry. This is awful news. I am devastated for you ❤️ Sending you lots of love xxx

Oh my gosh @Tinpo I'm so very sorry to be reading this. How awful for you xxx

@Tinpo I am so sorry, I am hurting for you. I can’t imagine how you’re feeling. Here if you want to talk. Sending lots of love ❤️❤️❤️

@Tinpo so sorry to see this. Sending lots of love ❤ xx

@Tinpo I am so sorry for what you are going through. Take care of yourself x

@Tinpo I am so sorry, you must be devastated. Sending you a massive hug xxx

@Tinpo I'm so sorry - that is heartbreaking news. Thinking of you xx

@Tinpo I am so sorry 😔 I am absolutely devastated for you. Sending love and kind thoughts xxx

Morning all. Bfn today after my superovulation. Not unexpected as the whole thing felt like a bit of a disaster from the beginning. I had a scan yesterday though and I've still got a 16mm follicle on one ovary?? I've emailed the clinic to ask what that's all about. I triggered the day after getting my follicles to that size, so did one just get stuck, or is it a random one growing at the wrong time or is it developing into a cyst?
All in all, I'm fucked off that I did the superovulation and don't fancy trying it again.

I'm other news, we're taking a month off ttc! Very pleased about that and we will be starting ivf in May, all being well. Had our first consultation yesterday and our doctor is lovely, really understanding about our history and most importantly, he's happy to use immune support for our round (it's an nhs fresh cycle). So I've got a nurse consultation in 2 weeks and then preparing to start with my May period :) interestingly, he thinks I need a low dose of pred from the start of my cycle, so we're trying that (and I'll save some money as he's prescribing the pred and clexane). He's fine with me carrying on with the hydroxychloroquine and intralipids, which I think for peace of mind, I'll do.

I hope everyone is doing OK ❤️❤️

Hi ladies, I hope you are getting on okay. I’m happy to see so many of you having good results with Dr S, although I’m also really sorry to see some of you still struggling and having losses too. I was a regular on this group last year, but after my fifth loss on Christmas Eve (of all days!) I took a break from the group, as I was struggling to cope. I had an ERPC and we found out that the baby was normal, which was gutting. I’m just checking back in now as I was hoping you might be able to give me some advice. My fifth loss was the first on Dr S’s treatment plan - I had Humira pre-pregnancy, hydroxy, aspirin and intrallipids but no steroids, because he was reluctant to give them to me during Covid. Ironically, at the follow up consultation, he then recommended steroids which did upset me. I have to say that we lost faith in Dr S at this point and we have since put our care in the hands of ARGC, who we were being treated by before. In an attempt to throw the book at our next try, we did ivf again last month and managed to get one perfect-looking PGS normal embryo, which we plan to transfer soon. ARGC are prepared to throw the book at it, which makes me feel better, but the one think I want to make sure we get right this time is the steroids. I want to insist to them that I’m put on at least 25mg prednisolone, which I know is what Dr S prescribes and also what our NHS recurrent miscarriage specialist has suggested. My question is: of those of you with continuing pregnancies here, how many of you are on steroids? I feel like that was the missing piece for us last time and desperately hope it’s what makes the difference this time around. Has anyone here failed, like me, with just the hydroxy and intralipids? I guess I’m just looking for hope that next time can be different. xx

@VenusStarr I'm so sorry super ovulation was unsuccessful. It sounds like there are positives on the horizon. I have absolutely everything crossed for you x

@Everhopeful35 I'm so sorry you had another loss. glad you have a new plan in place. I am currently 21 weeks and I took steroids until 16 weeks (started weaning at 12/13 (my dating scan brought me ahead slightly), I also took cyclogest until 20 weeks. I just have to be clear that I have not had the tests, so I don't actually know if if I needed the steroids or the cyclogest. I firmly believe it's the steroids that got us this far though. I had 3 early losses before, the last one in November 2020, and I always started bleeding before the heartbeat had stopped, so I always wonder if my body started to reject the pregnancy when the pregnancy may otherwise have been ok.

As I say, i haven't had any tests, except the clotting/sticky blood/lupus tests etc, and a internal scan to check structure so I can't say for sure that the steroids helped, but I firmly believe they did. I hope it all goes well for you x

Thank you @Daffodil21 ❤️ I hope you're doing well. In one way I guess I'm glad I tried and also giving myself the trigger injection was good practice for ivf! I do feel ready to move on from ttc naturally now, I feel like a shell of a person since starting with Dr S. So the break to focus on me for a while will be good.

Good to hear from you @Everhopeful35 I have thought of you since you last posted in December. I'm very sorry that your baby was tested as normal, it's heartbreaking to have put your faith in the treatment and it not worked. I understand your feelings about Dr S, I think when you're struggling there doesn't seem to be much support and you just are told to keep going with no real direction.

With regards to the steroids, he's added those into my plan now too (and he said I probably should've been on them from the start, so feel like we wasted 3 months anyway). But when I saw my ivf doctor yesterday, he wants to put me on a low dose (10mg) of pred from the start of my cycle / stims and then increase to 25mg, which is different to Dr S. But that is a fresh cycle, so FET might be different. But my ivf doctor thinks I need longer for the nk cells to be calm and starting just before transfer is too late (and said me taking it from ovulation is likely too late when ttc naturally). My ivf doctor doesn't think I need intralipids or hydroxychloroquine and feels the steroids alone would help us but said he's happy of I feel more comfortable to add these in as they don't harm, but definitely the steroids seems to be gold standard.

Wishing you the best with your transfer xx

Hi everyone,
I was due to get my intralipids done today as I’m meant to be ovulating in about 6 days.
I started taking metformin about 4 days ago and I’ve had an upset tummy ever since.
I informed the clinic and they have just called me as I am about to leave telling me they can’t see me because I need to be clear of diarrhoea for 48 hours before getting intralipids done.
Has anyone else experienced this? I’ve been advised to continue taking the metformin even though I told the nurses it’s definitely what’s bringing on the diarrhea.
So my question is when will I be able to get my intralipids? Does this mean I’m going to miss this cycle? I’m so upset and so confused please advise.

I'm sorry it's been cancelled today @HopingForABlessing I've heard metformin does have strong side effects, hope you're OK. Hopefully this will ease and you can still get intralipids next week. I've had them at various points before ovulation.

The other thing to be reassured by is that Dr S works for the nhs too and with those patients he doesn't prescribe the intralipids and has success. So I wouldn't think you need to miss trying this cycle (unless you don't feel comfortable trying) xx

@VenusStarr thank you. I contacted the clinic today and they said to stop the metformin if I’m having severe side effects as I need to ensure I’m clear of diarrhea for 48 hours before getting the intralipids. But I thought diarrhea is normal and not considered severe? I’m so confused. What I might do is stop the metformin until I get the intralipids done and then start again after my appointment.
The thing is I don’t have a week to wait as I’m ovulating around Wednesday and need to get the infusion done before that - do you know what I mean?
This is so confusing! :(

@VenusStarr yes it sounds like it's time to try something else. I'm it surprised you feel like that after all you've been through.

@HopingForABlessing I'm sure you already are, but do you take the metformin with food? I read this can help reduce the side effects, and I didn't get any nasty side effects when I was on it. I was only on it for a few weeks though. Sounds so stressful and confusing!

@Daffodil21hey! Yes I do take it with food. And literally within an hour of taking it - I’m stuck in the toilet for over an hour. It’s awful! Never had anything like it. I guess I’ll get more answers when I speak to the clinic as they rearranged my intralipids appointment for Tuesday.
They never bloody answer the phone!

@VenusStarr sorry to hear the SO didn't work, at least you've got Plan B all sorted for May, I think we are going to wait until then aswell to save up some money, so we will be IVF buddies! My mum is getting chemo just now aswell and honestly I just feel so tired and drained from the stress of it all, the break from ttc is definitely needed for us aswell!

@Everhopeful35 we also had a loss on the hydroxy and intralipids whilst doing ivf and Dr S has now recommended the 25mg Pred for future transfers. It was pretty gutting at the time but what can you do? I just had a failed embryo transfer there that didn't even implant and i took everything possible....my consultant at the ivf clinic is now saying I should try not taking the aspirin until BFP as there are studies showing it can affect implantation....feel like I'm dammed if I do and dammed if I don't?!

@HopingForABlessing what a nightmare, I am the same when I start the hydroxy and have terrible upset tummy for weeks. I've had terrible side effects coming off the pred and hydroxy there aswell where my face and neck were covered in horrible raised rash and puffy skin - its not fun!! Hope you get it sorted out xx

@HopingForABlessing that sounds horrible! I really feel for you! I was sure you were but couldn't help but mention just in case there was a small chance you weren't! I just have just been lucky! I wasn't looking forward to taking it though as I'd heard of those horrible side effects!

@HopingForABlessing why don't you take some Imodium a few times a week to help with the diarrhoea ?
It upset my tummy to start with and I took that for the first month until my body got used to it then it was fine and didn't take it after ovulation ect.... xx

Thank you @Daffodil21

Oh yes, an ivf buddy would be good @Luckyducky2 :) I'm feeling quite hopeful about doing something different now. I'm sorry to hear about your mum, you've got a lot going on ❤️

Hope you can get in before ovulation @HopingForABlessing 🤞

I'm quite annoyed with the clinic - they're normally pretty good at replying to emails, but they've not come back to me about this follicle or the bfn. Starting to feel pretty disillusioned with it all. I'm pleased we're on a break anyway, but I would like some acknowledgement or reassurance about it. X