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

@VenusStarr thank you. I hope you’re doing okay. It will work out for you, stay strong ♥️
PM me if you want to vent! Xx

Thank you @HopingForABlessing I finally got a reply from the clinic, just said the follicle will probably disintegrate 🤔

I think I'm going to ask the GP to check my estrogen levels once af has arrived. I've been googling and I think it's not totally unusual, but if it's a cyst my estrogen levels will be raised. One thing I am worried about our ivf is the consultant says due to the way the funding works, if we need to cancel at any point that's the funding done, so I don't want to risk getting to that point and needing to stop because it is a cyst and then it's over before it started. X

Hi ladies lots of updates.
@Tinpo so so sorry to hear this. Once you see a heartbeat you start to have hope. 😔

@VenusStarr ivf sounds like a good call. I've had good experiences at the clinic and I know lots of others have, so I'm sorry it's not been great.

@Everhopeful35 good to see you again. I hope you've taken some time to rest. I've heard ARGC are great.

I'm currently 18 weeks after treatment with humira, hydroxy and intralipids at crp clinic,so it seems to hand worked for me so far 🤞

Thanks for letting me know how you're all getting on - and congrats to those who have continuing pregnancies.

@VenusStarr I totally get your frustration with Mr S and feeling like you wasted three months. My original treatment plan also recommended prednisolone but when it came to it, he refused to give me it because of Covid, even though I begged him for it and said I'd shield. It's very upsetting to know the baby was normal and it perhaps could have made a big difference. I understand why your IVF clinic want to start you on a lower dose and move to a higher dose - mine have said the same. Not sure if there's any truth to it, but they said a higher dose initially can mean the embryo is less likely to implant.

@Daffodil21 I'm so glad the steroids worked for you. If you don't mind me asking, how many weeks were your previous losses at? Mine always happen at the same time (literally to the day) and I'm curious as to whether this happens to others.

@Luckyducky2 I'm sorry to hear your embryo transfer didn't work 😔 Which IVF clinic are you at? I really hope the 25mg steroids helps next time. Do you mind me asking: why did you decide to do IVF? Was it difficulty getting pregnant or just for more control over the situation? Ours was the latter - to hit my system with all the drugs before I'm even pregnant, as I didn't really fancy coming on and off steroids each month on Dr S's treatment plan. But I do worry about whether we're doing the right thing, as it's obviously cheaper and less stressful to do it the natural way. Plus, I'm not a great IVF responder (I got one normal embryo from 12 eggs collected).

Thanks @VenusStarr fingers crossed May will be our lucky month! 😘

Hi @Everhopeful35 we're doing ivf as I'm getting on a bit 🤣 I'm 42 this month and it was taking longer and longer to fall pregnant. I tried superovulation last year for 6-7months which has worked for me in the past when I had my wee boy but I didn't even get a sniff of a positive test last year until I did ivf and then we lost that one. Dr S has said I need the pred now - that's really interesting that you've been told to take a low dose first....I wonder if I should try that? I just had my 4th embryo transfer and its the first time an embryo hasn't implanted even though we took pred, hydroxy, intralipids, cyclogest, fragmin, aspirin and every other supplement! I'm defo going to come off the steroids more slowly next time as I had a really bad reaction with horrible rash and swollen eyes.....would make sense to go onto them slowly too? Xx

@Everhopeful35 sorry I meant to say I'm at GCRM in Scotland, there's not much choice of ivf clinic up here unfortunately and when you mention immune issues its very much met with eye rolls!!!

I just wrote a whole post and it didn't post! So going to attempt to re-write it and sorry if it appears twice!

@Everhopeful35 it's interesting you say that, similar situation here! So my first was actually a blighted ovum, but the second and third stopped when they were both measuring 6+3, they just took a bit of time to come out. I had bleeding, so it wasn't a MMC.

I also started off on a lower dose of pred. I must just be clear that no doctor advised me on the dosage. I had some pred left over from pregnancy #3, where I started taking it way too late, and the pregnancy ended not long after. I was waiting for a referral for the RMC, and as a result had been discharged from the fertility clinic, so I was under no ones 'care'. We had planned to go private for testing in Dec, but I got pregnant so we didn't. I decided my dose purely based on reading dr beer's 'is your body baby friendly' where it says about taking 5mg pred with breakfast and 5mg with dinner from 2dpo, then upping to 10mg with breakfast and 10mg with dinner if a positive test (stop taking if AF arrives). This is what I did, and if we are lucky enough to have this baby and try for #2 I will definitely be doing this again. I don't love the idea of coming on and off steroids, and maybe I'll re-evaluate if it takes a while. Then I might test early every month and start the low dose then for a few days if a bfp. We'll see how we go!

Also just to add, I've not actually had the tests, so the pred may not have made a difference for me. I firmly believe it did, and I honestly don't think we would be at this point without it, but I don't know for sure.

I feel so angry on your behalf's that you weren't prescribed the pred when you specifically asked for it. I know it's not ideal in a pandemic but neither is having loss after loss. Surely the potential benefits outweigh the risks here??

Thank you for the nice messages everyone. It was just so upsetting putting so much into the pregnancy for it to fail. We said all along that we could ‘handle’ an early loss because we would just presume it was a random genetic issue and try again straight away, but because we saw a heartbeat at ten weeks it feels like it’s right on the border of an early and a later loss.

I’m still holding onto some hope that it will be a one off genetic abnormality where treatment wouldn’t have made a difference anyway. That means we could try again with some hope. If it’s another healthy baby that my body has killed for no apparent reason then I think it would just be irresponsible to try again.

If we do try again though we won’t be seeing Dr S. I couldn’t handle all that travel and money again, and I just didn’t really warm to him. Luckily we have a very supportive Tommy’s consultant closer to home who will do an almost identical treatment plan just without intralipids.

Anyway sorry for the rant/brain dump - I had surgical management yesterday and am in a lot of pain today so stuck to the couch feeling very sorry for myself.

I'm sorry you're in a lot of pain today @Tinpo ❤️ I hope you do get some answers. I'm glad you're under a supportive rmc consultant. Hope you're able to get lots of rest.

I'm undecided about the intralipids, I just feel like I've put on so much weight and when discussing it with the ivf consultant he was like, well it's usually used when people are malnourished, so no wonder you feel like you're filling out!

@Everhopeful35 @Daffodil21 Re the prednisolone, I asked Dr S at my first appointment if he was prescribing it due to covid and he said he was, if you can shield etc. But when I got my results, he hadn't included pred and I didn't question it because he went through my results and gave the plan as his recommended treatment. It was only at my follow up in February I asked if it was worth adding it in and he looked at my results again and says I'd normally prescribe pred because your activation levels are exceptionally high and just said covid was the reason . And to be honest, from then, I've felt differently about seeing him. I am starting to lose hope that his plan will work for me.

But I'm glad I've got the tests done as we do have a reason now and we have other options to explore.

🙏 For May @Luckyducky2

@Tinpo sorry you're feeling terrible today, I hope the pain eases in a day or so (though I know the pain in your heart will take some time ❤). I've lost 2 at 11 weeks and its so cruel, you feel like you're almost in the 'safe zone' and get excited to tell everyone your happy news to have it torn away from you. Its just awful and I really feel for you. I also left a very high pressure career due to a horrible boss who wasn't giving me any support during ivf and when I lost that pregnancy I felt numb and like I'd lost everything, now I'm hell bent on finding answers and getting this baby that I've given up everything for! I'm just determined that it cannot end like this after all this heartache! I hope you get some answers from the rmc specialist, try not to give up hope! Xxx

@Daffodil21 I really must order this Dr Beers book, I've heard so many women mention it, sounds like it must be worth a read? Can I ask how you managed to get more pred, did you go to your gp? We had thought about going rogue but I was worried what if I managed to get pregnant and didn't have enough pred to see me through? 🤔 I'm already getting myself worked up for this next trip down to Epsom, its such a faff trying to get time off for my husband, booking hotels, cattery etc xxx

@VenusStarr sorry I read those previous posts wrong, i see you are doing the 10mg of pred to start with aswell! Are the ivf clinic putting you on fragmin too? I wonder if its even necessary? The one time I use it and my embryo didn't even implant! Xxx

@Luckyducky2 to be honest I only read the few chapters. I put it down once I knew I was pregnant as I thought it would just make me more anxious. It was worth its weight in gold for me though just for the first few chapters!
I initially got prescribed the pred prescribed privately, then my GP got an NHS consultant to phone me for an appointment. I asked him if he could prescribe the cyclogest to save me a bit of cash, and he ended up prescribing the pred too, but he prescribed the full amount of what I needed when I already had some left over. So I had enough to keep going until 12/13 weeks and then wean off and stop at 16 weeks. Good job I did already have some left though as it took 3 weeks for the NHS consultant to call, despite it being an 'urgent referral'

The ivf clinic are putting me on clexane I think @Luckyducky2 (that's similar to fragmin isn't it?) I don't really know the science behind it, but I think it is supposed to support implantation. But it's a blood thinner isn't it? And I know aspirin has been shown to impact on implantation (I stopped it at the beginning of this cycle).
I also am a bit about all the injections with ivf and so much medication. X

@Daffodil21 oof I would be scared no-one would help me get the meds.....my ivf clinic dont do pred or blood thinners and our local rmc consultant was less than useless! 😤 We really are in the dark ages up here, it's so frustrating! xxx

@VenusStarr ah yes I've heard of others taking clexane....im so sceptical about all of this, I did ivf 2 years ago and didn't have any of this, had 1 biochemical and 1 ectopic that miscarried at 8.5 weeks....I just wonder do I need fragmin when my embryos usually implant? God its all just a big gamble isn't it!! And yes I feel the same about taking so much medicine....it was actually fine when I was on it all but coming off it I felt horrendous....cant be good to keep taking all this stuff? Can only hope and pray it actually works 🙏 xxx

@Luckyducky2 are you in Scotland by any chance?? Me too!

@Luckyducky2 yes I'm up in Glasgow! Ooh thats good to hear they did help you, I feel its such a postcode lottery for fertility treatment and so far I seem to not be in the right place! 🤣

Sorry clicked the wrong name there when I replied @Daffodil21 🤦‍♀️ can you tell im tired lol xxx

@Luckyducky2 ah I'm a bit further up north than you! It looks like I was incredibly lucky to get the NHS consultant to prescribe the pred. I didn't even ask him to prescribe that because at the time I thought I had enough and I didnt mind paying for it as it wasn't expensive, but then decided to take it a bit longer than initially prescribed. I only asked him to prescribe the cyclogest but when it came to the pred he said I may as well continue as I've started, then he added it to the prescription too!

Hey girls,
Hope everyone is doing okay?
I got a positive ovulation test yesterday & have been advised to start on the cyclogest today.
I was told to take 2 x 400g every night - both at the same time? I’ve chosen to use them rectally...so do I just pop them in as far as they go one after the other?! Do I need to wait in-between each application? Any tips lol?
I’ve tried googling it and YouTubing it but no luck - can someone please advise 😭😭😭 xxx

@HopingForABlessing
Yer just pop them in one after another, I used to do mine together at night before bed, you don’t need to wait between application.
If you don’t like doing them both together you can do one AM & one PM just depends how you get on. X

I do mine am and pm, I do them rectally too, much easier and no mess! @HopingForABlessing 🤞 good luck for this cycle.

Nothing to report for me, got an ivf nurse appointment next week. I'm focusing on my diet and have started couch to 5k and yoga. Feeling a lot lighter since we decided to take some time out.

Hope everyone is well xx

@VenusStarr glad you’re feeling lighter. Taking this time out will be really good for you. Let us know how nurse appointment goes next week!
Thank you for wishing me luck ♥️

@LRL12 thank you! I will pop them in one after the other at night Xx

Hi everyone

I just wondered what dose of Letrozole Mr S usually starts people on? Based on blood test results (dropping amh but not yet drastically low) we’re going to be heading to Greece for IVF in July but my consultant has agreed to let me try 2/3 months of letrozole first. As I’m already ovulating I’m on 2.5 mg but just wondered if this is going to be enough. Ideally I want multiple eggs as I only have one tube!

I have my first scan tomorrow so very excited to see if it’s made a difference!

Hi @Badlydrawngirly Dr S uses 7.5mg of letrozole. I initially didn't respond and it pushed my ovulation back about 6 days. I had 3 follicles just before trigger (5 in total) but I don't think one released as it was still there last week. Good luck!

Thank you! That’s what I’m worried about too. Hopefully I’ll get some idea at the scan tomorrow!

I hope you’re doing ok x

@Badlydrawngirly Dr S prescribed me
2.5mg letrozole mainly to move my ovulation date forward and make sure I ovulated as I have PCOS. 2.5mg worked for me - single pregnancy. Everyone body reacts differently some only need a small dose and others higher dose, try the 2.5mg you can always go higher. Good luck xx