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!

Lovely to hear from you all. Thanks for the check in @VenusStarr. Still waiting here had to have another 2 injections of humira then can start trying next month.

Sorry to hear about all your superovulations. When do they recommend doing this? It hasn't been mentioned to me at all?
Many thanks

@clhiu just wanted to pop on with a positive story with super ov. I fell pregnant after my 3rd round and i had a little boy back in March. I felt the same as you the first round. I had 3 follicles of good size and wondered why i didnt fall pregnant when i had fell pregnant naturally first time with both of my previous pregnancies (one ended in missed miscarraige and one ectopic with tube removal) however, it is a bit of guess work with super ov with measuring the follicles and estimating when to trigger etc. I was also upped to 10mg the month i fell pregnant. I wasnt actually worried about super ov causing another ectopic and i was really anxious about another ectopic in general but didnt link super ov to a potential risk for another one. I think the clinic would stop anything that could cause any danger to you. I guess it also depends on your situation. I only ovulated from my side without a tube so super ov was a no brained to me to try and stimulate the remaining ovary with a tube and it worked. I know its really hard but try to stay positive and have faith in the clinic. They really are amazing. (My opinion of course) wishing you lots of luck xx

@Trgf55 thank you so so much fir sharing your positive experience, I really need some encouragement, so hard to stay positive when there’s so many different theories out there about what works and what doesn’t and what’s even detrimental. Really happy to hear about your happy ending ❤️ A lot comes down to money for me as well as travel to the clinic being pretty far so if it doesn’t work in 4 cycles I’m tempted to stop it there, but we’ll see.

Thanks @VenusStarr I heard from others that Letrozole affect lining, but it just goes to show how everyone responds differently and even the same person from cycle to cycle. Of course by now I know a good lining goes a little way without a good embryo. Currently 3dpo and OTD a week today. Only 4 days on the Pred and itms already affecting my sleep pretty badly, not loving it, also I cannot imagine the increased levels of stress coming from this a rise in cortisol to be any good for my egg quality, but we’ll see. I hope you IVF appointment brings promising news.

@Sophi81 Thank you so much for your reply! I'm seeing them start of September so I'll let you know what they say about scan, taking August & September off because of the Ectopic 🙄 although kinda enjoying the break now!

@star2022 I am so so sorry it didn't work. You never know, this up in dosage might just be the ticket but I understand the worry with the lining, I hadn't realised that happened... I hope you're ok 🌷

@VenusStarr I hope you enjoyed the spa, that is well needed!!

@Privatemedical246 I was told to go away for 3 cycles and try 'naturally ' with the drugs. I felt so so deflated when it didn't work and annoyed that I needed a review appointment (more money) but that's when they told me about Superovulation to speed things up... so hope that helps!

@Trgf55 Thank you so much for your story, I've found that so reassuring. I'm still nervous about going forward but you've given me hope it's possible to do SO and not end up with another ectopic!

Hope everyone is OK 🌷💐

Hi everybody,

I do try to keep up with your posts but find it a little tricky so wishing you love in wherever you are in your journeys.

We’ve been on a ‘ttc ’ break since April and don’t plan to resume IVF until Dec / Jan 2024. I’m under Dr S at CRP and wanted your opinion on the humira injection.

I took 2 injections in Jan & Feb this year (2 weeks apart) and fell pregnant with our FET in March. I’ve been advised that it lasts in your system for 9-12 months and CRP have told me that I don’t require about dose before starting treatment again. Me being me and as I’m trying to rule out all possible routes for another miscarriage, I can’t help but think / prefer it if I had another dose.

Those of you who have had humira, when did you inject in relation to your treatment / success? Do you think I should request another dose or trust their judgement?

As always, thank you in advance for your wonderful support xx

@clhiu yep i completley understand re the money. Its a lot. Its such a draining process emotionless and financially! I hope you get some positive news soon.

@Deerdancer34 glad it made you feel a little better, i totally understand how terrifying the thought of another ectopic is. I still haven't worked my way through the trauma of mine tbh. Be kind to yourself xxx

@RJayne could you repeat the blood test that indicates if you need the injections? Mind you they are more expensive than the injections! But if your about to spent lots of IVF Id be wanting to make sure I've covered all bases. X

@Privatemedical246 Thank you!
They did say that was an option but as I had them done in Jan this year and apparently my levels were only “slightly raised”, I get the feeling they aren’t happy to promote it.
This journey is so tricky, do you trust them or do you spend lots of money on tests I perhaps don’t need?! If only we had a crystal ball!

Hey, how is everyone? So much for loosely ttc, my ovulation this cycle is delayed 🙄 I think it might have happened in the last couple of , around cd20. We managed to dtd when I had quite a bit of ewcm this week. I think my body tried at my usual time around cd10 as I had ewcm and my temps started to go up but then dropped back.
I've been super stressed though so think that might be why. So think af is now due on my 40th birthday 🫠 lovely. We might be in with a tiny chance but not holding my breath.

Hope everyone is doing ok ❤️

Just popping on to say hello to @KtAgs and @NessyT91 who I’m pretty sure I remember from the 2020 thread - congratulations on your babies!

I had DC2 in Nov 2020, my second with Mr S, and trying again now for baby 3 having persuaded my GP to prescribe the protocol (without intralipids) which for me was pred and progesterone. This is only cycle 1 for me and the first time trying without SO - brought back a lot of bad memories and the pred is making me feel horrendous.

Im sorry for everyone that finds themselves on these threads but wishing everyone the best of luck.

Hello all, hope you’re doing well ❤️

My second cycle hasn’t worked, and have been plagued by some frustrating easy@home evaps (although my fault for scrutinising them hours after the window for reading the test!). The amount of time I waste on this stuff is ridiculous!

Last time I conceived, it was right after a Hycosy and I’m keen to try and have another one to boost my fertility. Does anyone know if I’d have to have an appointment with Dr S first before arranging a Hycosy at CRP? I’m assuming so as we didn’t discuss this before. If that’s the case, I guess I may as well wait to the review appointment after 3 cycles.

also another question, do we need the blood test results that they request we get from our GPs (eg full blood count etc) for our 3 cycle review with Dr S?

@harrietm87 hope youre doing ok, sorry you’re having a rough time of it with the pred and bad memories. Fantastic you had 2 DC on his protocol though! Did it take you long to conceive both times? I’m starting to feel frustrated it will never happen for me!

@Lily1990 thank you.

I was very lucky with my previous experience - conceived DC1 on cycle 1 and DC2 on cycle 3, both with SO. I had 4mcs (3 before DC1 and 1 after) and they were all conceived first time so I’ve never had a problem actually getting pregnant, just couldn’t stay pregnant without the pred! All 6 of my previous pregnancies were when I was 29-33 though and I’m 36.5 now so feel like it will probably take longer this time.

Has anyone had bad nausea with the pred? I didn’t have any at all previously but have felt so sick this time and am only 7 days in.

@harrietm87 nice to hear from you again! That’s great that your GP has agreed to prescribe the treatment for you - should cut down a lot on costs and travel. Hoping for a sticky BFP for you soon!

@Lily1990 im sorry this cycle hasn’t worked… it’s such a trying time! I find that it takes me a bit longer to fall pregnant on the treatment plan - for my DD it took 4 months and this time around it took 5 months. When I’ve tried without I would usually get pregnant within a couple of cycles but then would miscarry around 5-6 weeks. Hoping for you that this cycle will be the one!

I’ve been a bit hesitant to share the news this time - scared that I’ll jinx it I suppose - but we had good news at our 7 week scan a couple of weeks ago. Baby measuring on track and a strong heartbeat. We’ve got another scan tomorrow morning so really hoping that things are continuing to progress well.

Hi @harrietm87 and @NessyT91 .

Nice to hear from you both again 😊.

I've also got hesitant good news. Baby measuring on track at about 9 weeks today at scan. So much nicer getting scans at the clinic vs the NHS. Unsurprisingly.

Sending good vibes all your way and fingers crossed for all of you trying on this tough journey.
Xx

@VenusStarr really sorry to hear your natural cycle isn't going as planned and you've not managed to pinpoint ovulation. AF due on your 40th birthday is really cruel and unfortunate timing. I started AF on my 41st birthday after loosely trying to conceive for about 4 months and broke down, it wasn't the best of birthdays I must say. Really good that you have a plan post this though. Your body guven you any more signs since yesterday?

@NessyT91 and @KtAgs congratulation on your successes. Would you mind me asking how many cycles with CRP didi it take you? Are you on the Pred and Superovulation protocol?

I'm waiting for my OTD on Wednesday, but cannot put aside the niggling paranoia of an ectopic due to a stitch like pain localised to my lower right hand side tummy since CD5, probably too early to be a sign of ectopic yet, but if anybody on here has any experience of it on this thread, I'd love to hear your thoughts, not much I can do I know until PT and Beta HGCs I realise. The pain comes and goes but at random times it suddenly spikes to more like a stabbing level and a couple of times it stopped me in my tracks the past couple of days. It doesn't seem to be linked to moving or position although I'd swear just now I could feel it lightly responding to taking steps.

I hope everyone else is doing ok

Congratulations @KtAgs @NessyT91 🥰

@Lily1990 I am sorry this cycle didn't work and that you had some evaps. It's so hard to not get consumed by it when you're trying with the meds. Are you going straight into another cycle?
I just emailed the nurses saying I wanted the hyfosy and they booked me in, didn't need permission/ Dr S to see me first. I usually just sort my 3 month bloods with my GP but if you've got a review soon, might be good to get them in for when you see him.

@clhiu thank you. I don't know why I have hope things will ever be any different 🙃 I think I have ovulated now. It's got to have been stress preventing it. I'm having a really tough time at work at the moment. Interestingly I had a really good supportive conversation on Thursday with a colleague, helped me talk through things and validated a lot of what's been happening and I think I ovulated a day or so later.
I'm sorry you're worrying about ectopic. I really hope it's a lovely bfp for you and no complications 🙏

How are you @star2022 Hope you're doing ok

Thinking of you all and sending love ❤️ @Privatemedical246 @comingsoon786110 @Newbeginnings22023 @Zest11 @Deerdancer34 @Danni8 @HopefulH @RumandSpinach @nottsgdns @harrietm87

Thanks so much everyone for the kind words. ❤️ the scan went well this morning which was another great relief.

@VenusStarr im so sorry you’re having a tough time in work at the moment. I hope it all resolves itself soon.

@clhiu it took me four cycles with my first, and five with this one. I didn’t go down the SO route, although I was tempted to as it took a bit longer to conceive than my first three pregnancies. I’m taking Hydroxychloroquine, cyclogest and intralipids. I know a lot of people take pred but when I first went to Dr S it was in the middle of covid and he wasn’t prescribing it as much. I’m based in Ireland now so I’m no longer under Dr S but I’ve found a clinic here who have prescribed me the same plan. I’ve found hydroxy fairly ok, no bad side effects thankfully although it does taste fairly gross!

Delighted for you @KtAgs. Hope you’re feeling well x

Glad to hear your scan went well as well @NessyT91 .

I also conceived on a natural cycle. It took me 10 months to get pregnant. (Previously before 35 it took max 4 months to get pregnant). The clinic were keen for me to try SO but I didn't fancy it.

Similar to NessyT91, I had my first treatment to get DC during the height of the pandemic so I was on steroids and hydroxy, cyclogest and intralipids but really didn't like the steroids so Dr S dropped that and I had ovulation intralipids. And it worked first cycle of trying that.

This time, I had Humira added and tbh I forgot to get ov intralipids and didn't have 4 week intralipids either because I was away. Fingers crossed that's all worked though.

Xx

Thanks for sharing your stories @KtAgs and @NessyT91, pleased your scan went well yesterday ❤️

Cycle 2 ended in another BFN for me despite very good lining and 3 leading follicles, already losing faith in this protocol, but trying to remind myself of your experiences and telling myself not to give up before at leas 4 cycles. I will however be asking Dr Edge at my next appointment why she thinks it would take me up to 6 cycles when in my natural attempts I always got pregnant within 1-2 cycles, I would really like to understand the scientific reason for it when we know I’m definiovulating 🤷🏻‍♀️

How are you getting on @VenusStarr ? I hope everyone else is all right.

I'm so sorry @clhiu it's soul destroying and there's no rhyme or reason for it ❤️ I've not had a natural pregnancy since I start immune treatment 😢
I thought I was ok but had a cry this morning, I just don't see it happening for us. I've got the ivf appointment next week but I'm questioning if I even want to put us through it because I have no hope. But I guess there's a tiny bit otherwise I wouldn't be considering it. X

@VenusStarr thank you so much for the advice, that is super useful to know. I’m now 12DPO and had a ridiculously faint positive today, but am sure this is a chemical as the line faintness today at 12DPO is similar to what I would expect around 8/9DPO. Having to wait it out and try to be realistic. Wondering if I need to be on a higher dose of pred (as only on 15mg) if my NK cells have already attacked this one.
I am sending you a big virtual hug. This is exhausting and you are doing so well. It’s a hard choice whether to go through IVF, but it could work and I think sometimes we need to know we have tried everything before giving up. Hope you have a good day at work today and you can take some time off soon xx

@clhiu im a bit skeptical about SO myself, as have conceived 5 times and never on any of the 4 letrozole cycles I did (even though everything supposedly looked great at the scans). I can’t help but wonder if letrozole puts my body off! Also I know I find a BFN less disappointing if I haven’t splashed out lots for the scans and trigger. But obviously it does seem to increase the success of lots of people and I’m basing my judgement only on my own experience! Xx

Hi all,

Apologies for being quiet on here. Just a bit pissed off with CRP at the moment. I was late doing my tacro blood test by 2 days and they stopped my medication that I had been taking for a month!! I know they have strict protocols when it comes to this medication but i just think it was uncalled for. They said I have to come for another consultation with Dr Edge and she will determine whether she will allow me to continue on the meds. Just shows they have no compassion at all and its simply a money making scheme for them.

They still haven't advised me if i can ttc yet and it just seems like its all going to be in the distant future. I emailed the nurses as well and they have been so rude and have no compassion over someone's situation!

Hope everyone is doing okay 🩵🦋

Hi all - sorry, not been around for a while trying to "just relax" ahead of the FINAL EVER PREGNANCY ATTEMPT.

Glad to hear of everyone's progress. No one can say we haven't tried our hardest to figure it all out.

I'm on IVF FET cycle 5 (2nd on Dr S's protocol which this time is hydroxy, intrallipids + progesterone). Agree with the hair loss mentioned above, mine is coming out in handfulls after 2 months on the drug.

Having thought that post IVF attempt number 5, I'd be able to carry on life with "no regrets" and having tried everything, I'm now being told about tests I've never considered before.... things like the ERA and so on....which mean I won't truly have "tried everything" and I'm a bit bummed out about that. I guess I'd heard of these extra tests but never realised they were something I should do until cycle 5 and now, honestly, I'm finding myself becoming a bit over it all. Not to say that hugging someone's newborn doesn't fill me with longing, but it's not quite the obsession it was and I suppose that is the best outcome for me.

Anyway - my question as a needle hater is....can I get away without doing intralipids? or are they significant?

Sending lots of love X

@nottsgdns ❤️ sending you lots of love. We're looming down the barrel of final ever (if we do ivf again at all).

Just wanted to offer reassurance. I have done the ERA and evidence is less not that robust and its kind of being debunked now. So it might not be essential. Did they mention the endometrio tests? I had ERA, EMMA and ALICE. Which found nothing but looked for inflammation and infection which could be helpful. Some people just take the antibiotics - Doxycycline and take pre abd pre biotics without testing.

Re intralipids, Dr S doesn't use them in his NHS limic, so I do winder how necessary they are? I guess it's a question of if you'd think after, I wish I'd done them.
Be gentle with yourself. You are doing enough ❤️

@comingsoon786110 I'm so sorry you're not feeling supported by the clinic. How have you found Tacro? What's your next steps? Its horrible having all these extra layers on top. What would happen if you just decided to try? Sorry you're in limbo 💓

@Lily1990 I really hope this faint bfpdoes get darker. I totally get the anxiety and trying to protect yourself. Are you under CRP or another clinic? Will be thinking of you.

Feeling a bit crampy today which aligns with my usual cycle pattern but my bbt chart is saying I'm 5dpo. Ugh. Just want this cycle to be over. I've always been able to rely on my cycle.

Hope everyone is ok. This is such a horrible place to be 🥺💔 xx

Oh god. Sorry about all my spelling mistakes! Hope it's still readable!