Immune/NK cells pred thread #31

@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!

@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

@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

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

@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 🌷💐

@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.

@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

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

Hi everyone, hope you're all getting on okay! Nice to see some newbies although I'm sorry you're here in the same boat!

So as I thought, superovulation cycle 5 was a BFN so our little mini break turned into a depressing 2 days of headaches and feeling like shit. However, I took my last lots of meds (steroids, progesterone) last week Tuesday, its almost a week now and I still haven't come on my period. I had the same thing happen the month before, although that month I did have spotting until full flow came a whole 9 days later. This time, i've had absolutely nothing and its really worrying me now that all these meds are messing me around?!

Dr edge wants me to increase my letrozole this month (when AF arrives) to 10mg for the final 6th month, but i'm really worried as I have heard and experienced my lining gets thinner, the higher the dose as i noticed a massive 2mm drop in my lining from just increasing from 5mg to 7.5mg so god knows what 10mg will do! Has anyone else had lining issues with increasing dose?

I'm feeling a bit deflated about SO not working for us, I really thought this would be it for us but the closer i get to the 6th cycle now, the more I just know in my heart I will have to go back to IVF and spend yet another fortune.

@HopefulH that's so crazy about your endo and i agree, i don't know why they disregard endo? Fingers crossed this is your answer!!

@Deerdancer34 I'm really sorry to hear about your ectopic, i know its so worrying about follicle size, they made me trigger when I had a 30mm follicle one of the months and I was so paranoid.

@VenusStarr How are you? Hope you're okay and enjoying this little break as much as you can. When did you say you'd booked in to see your ivf consultant?

Also, does anyone happen to know (and i might be clutching at straws here) if you've already had 1 cycle of ivf on the NHS but then you move house to another PCT who also only offer 1 free cycle on the NHS, are you able to use them for another cycle? Or do they only allow you to have one regardless. I've basically moved recently and had this teeny thought that maybe I would be able to get another cycle as i'm in a different borough? Knowing my luck, probably not.

@HopefulH yes I had intralipids, prednisolone, omprazole, GCSF, Cyclogest, aspirin, vitamins, metformin and inofolic. These were all taken after the trigger except the vitamins and inofolic I been taking for months. As I said I wasn't expecting to get pregnant and was very negative about this working as we had already decided from December we were going to try ivf. And what were the chances of getting pregnant on the one cycle we didn't take Letrozole? I had no hope whatsoever so was a pleasant surprise when it happened. Oh and also I didn't even take the meds properly afterwards thinking it was gonna be negative but once the pregnancy test was positive I was panicking and started to keep track of the meds

@Deerdancer34 have you requested for a scan? If so what did they say? I hope it all works out. Got my fingers crossed for u x

@Sophi81 Sorry to jump in - did you then do intralipids, after you triggered? I'm having a CRP break at the moment and trying naturally - but terrified of another loss if I don't do the Intralipids. I'm planning on doing the post ovulation steroids and I'm on hydroxy still. I'm sure all the meds have stopped my body from functioning as it should and I think also the stress of the appointments too and trying to make it all work logistically each month! They want to put me on Gonal-f and Letrozole but I'm reluctant to push my body more at the moment and feel it needs a rest... so difficult to know what to do.

@HopefulH aww sorry to hear that. That's exactly what was happening with me in regards to only having one follicle after taking Letrozole. To be honest I probably would have continued the SO cycles just out of fear that I might miss an opportunity and it's only because I was forced to stop as I ended up in hospital with too many follicles is why the meds stopped and gave me a reason to have a break. It was just pure luck that I was on day 23 or 24 of my cycle when I went to see dr edge and I hadn't ovulated.
I might be wrong but I think the break from meds helped me.

@Deerdancer34 sorry for the late reply. I was put on gonal f in addition to Letrozole as I was only getting one follicle. Unfortunately the gonal f overstimulated my ovaries to 10 eggs which meant treatment had to stop as I was in a lot of pain. I was scanned at my local hospital and informed my ovaries are swollen so I will need to take a break until they reduce in size. So I informed dr edge of this who requested I come to see her the following month to assess the ovaries and see what the next plan of action is. So we hadn't taken any drugs for 6 weeks to heal: But the day we went to see her I was apparently ovulating so she triggered me and that's the month I conceived. I don't know why but I really do feel stopping the drugs really helped as we had been trying since January with crp and got pregnant in oct

Hi @VenusStarr (and all), thanks for checking in. My period arrived today and it’s 5 days early, so needless to say, not feeling too good today.

Having said that it’s good timing as I’m about to go on much needed holiday for 3 weeks, where I’ll naturally stop thinking about all this.

All being well I’ll do my final IVF attempt in October and take it from there. I’ll consider SO if this fails, haven’t made up my mind about this. Seems like we’re in a similar situation at the moment as I’m also on hydroxy while I wait, with an IVF plan. My experience on hydroxy has been ok so far thankfully.

I understand the reference to age. I’m 41 so this will be it as I can’t physically, emotionally (or biologically due to age) keep going beyond this plan. It’s all too much.

Hope you’re keeping well otherwise. And best wishes to all xx

Hi @VenusStarr thank you for walking me through your history with CRP, I so worry when I hear that your textbook cycle didn’t work that I’m wasting my time and money. We seem to have a similar history in that you got pregnant easily in the past, but cannot seem to on their protocol. I think a little break is a very good idea if you can keep your mind off things, I did my first ever round of IVF at 42 and 8 months and managed to create 5 blasts of which at least one euploid so I totally get the worry with age, especially as 40 seems like such a milestone, but you can definitely take a few months off to yourself. SPA time sounds lovely.

@Deerdancer34 thank you so much for responding and putting my mind at ease. You have a point that those people who ste successful won’t be found on this thread so taking it easy and giving this the time it needs. Dr Edge mentioned 6 rounds, not even 4-6. The thing is, for many of us who’ve been able to conceive easily in the past and have approached them to prevent further losses rather than help getting pregnant, it’s a tough pill to swallow to be told that even if you’re producing more than one egg at the time and are able to time intercourse better because of the monitoring, you may not be able to get pregnant for a whole 6 cycles.
I’m thinking of giving myself 4, then stop and literally go back to trying completely naturally because it’s a lot, all the appointments and the costs if after 4 rounds I still haven’t gotten pregnant which was never the case in the past.
I hope your next cycle comes around quickly and with your odds improving the more rounds you have, that this is finally the one for you.

My scan yesterday went better than the first one, she seemed way more pleased as I had 3 leading follicles over the required aize and a lining of 12.1 (the first time it was only 7.7 although she say that was satisfactory), they made me trigger there and then.
Thing is, one of the follicles is way too big and she said unlikely to be good quality at 25.7 so technically I still only have 2 like last time, with a similar sill difference in size to last time so not sure why she was so much more positive.

SO Cycle 1 I had
lining 7.4mm
LF 1 20mm
LF 2 15mm
LF 3 11.5mm
I was told to trigger the following evening

SO Cycle 2 (current)
lining 12.1mm
LF 1 25.7mm
LF 2 21.1mm
LF 3 16.7mm
told to trigger on the same day as the scan

Hello @clhiu How did the scan go? I was told SO usually works 4-6th cycle, so technically mine 'worked' the 3rd time but unfortunately ended in ectopic. I think it is probably just really bad luck so don't worry about an ectopic. Dr S must have had loads go through SO and there are women who have been triggered at higher follicles and been fine ectopic wise. I am more anxious but I think that's just because the losses are mounting up now & coming to the clinic was to solve them and with an ectopic there's nothing to solve, just bad luck 🙄 Feels like a kick in the teeth after the 1st 3 miscarriages tbh. Anyway, I'm taking August to recuperate and then will see what they say start of September because I will ask them about triggering at a 'not ideal' size! I don't have my things to hand but it was about 25mm when I was triggered but that was the same my 2nd SO cycle and no ectopic so please don't even think about that, there's enough going on for you to worry about!
I get how you feel, my 1st cycle had the ideal 3 eggs and ideal sizes but didn't work. Its hard to find the women who have had the success as they won't necessarily come back or be on a forum but I do know he is very successful, it might just take time & not happen straight away which I often forget! I have to remember ultimately there is no magic answer but at least there are some options available! Don't give up 😊

@VenusStarr I have to say its quite nice taking August off and not thinking about it much, I've never wanted to take a break but maybe its actually good for me! I've gone to my parents so feel like I've run away for a bit but dreading going back and starting again but that's to worry about in September! I hope you are ok and enjoying some respite??

Hello, I hope you don’t mind me joining, been watching this thread for a while.
I started seeing CRP in May following an unexplained chemical from a tested euploid embryo transfer and 4 previous back to back losses from natural pregnancies, 2 tested confirmed abnormalities, 2 untested and unexplained.
I thought at this point the RI route was my last chance as some swear by it on other threads. Maybe predictably, CRP found elevated NKC count and toxicity so put me on their standard protocol of Pred and monthly intralipids.
As I didn’t have issues conceiving naturally, they left the SO choice up to me. I decided to go with it as it had been a year since our last attempt at trying naturally so couldn’t be sure if things had changed, plus with my history of aneuploidy I thought encouraging the production of multiple eggs may give me a better chance of creating at least one normal one.
I my first cycle I produced 2 seemingly mature eggs (scan showed one at 20mm and one just under 16mm) and was told to trigger the following day. Dr Edge appeared disappointed as she was hoping for 3 eggs and told me to increase Letrozole dose from 7.5 to10mg and from 5 to 6 days from the next cycle, if unsuccesful. That first cycle was unsuccessful and tomorrow I have my SO scan for this second round on higher dosage.
My head’s already going on a tailspin about why I didn’t get pregnant with 2 eggs when previously I got pregnant easily naturally. I’m thinking maybe SO isn’t for me or the immune protocol is messing with things in that sense.
I’m reading a lot of stories on here about people having multiple rounds of SO and nothing working, which is making me even more skeptical.
Appreciate such people might have left this group by now, but anyone on here has a positive story to share on this same protocol with CRP? And if so, how many SO did it take you?

@Deerdancer34 if you don’t mind me asking please, what size were your follicles when you were told to trigger and ended up with an ectopic? So many things to worry about.

@Lily1990 and @comingsoon786110 Prof Brosens said I should take progresterone from ovulation, once a day in the TWW and twice from a positive test. I asked about a prescription and he said my GP and/or EPU and he said they would be "unhelpful" if they refused to prescribe it. I tried not to think of the unhelpful folk I've come across thus far 😂

@star2022 I'd plan to drink vodka in a sauna followed by a day of rollercoasters to trick fate into a BFP

@VenusStarr yes trying on my own, I am scared but the months off ttc has lulled me into a pretty irrational sense of hope. I'm hoping the stigaliptin has somehow whipped my endometrium into shape, and that this time progesterone does the job. I'm also taking NAC and ALA which have something (ish) of an evidence base for reducing miscarriage risk.

I can understand why you're cautious to go it alone, this is scary stuff.

Thank you @comingsoon786110 @Lily1990 I will book an appointment with GP and see what I can get! I knew about Progesterone but I did nothing about it because its such a faff but definitely will try now, to save any precious £££!! It's so hard to get anything isn't it & my Recurrent Miscarriage appointment was a waste of time, just told me to keep trying!

@star2022 I had done 3 SO cycles but at the moment I have to wait 3 months because of the Ectopic in June...I have booked a review appointment for September, another couple of hundred pounds down the toilet.... I'm not sure what to do, especially as you and @HopefulH , like me, have not had success in upping the letrozole dose.... I was supposed to be going onto 4 tabs but I'm not sure what he will suggest after the Ectopic etc. I can't help feeling that triggering a follicle that wasn't of ideal size caused this ectopic...so I understand you questioning why you were triggered because I certainly am! After @Sophi81 story & this enforced break, I'm wondering whether to try just the steroids & progesterone for a couple of cycles or the drugs + trigger like Soph had but no idea if they would let me? @VenusStarr @HopefulH I feel exactly like you, scared to try alone or to alter 'my protocol' in case it ends in miscarriage although tbh this one has just ended so crp aren't the magic answer that I was looking for...yet!?

Sending you all 💖💖💖

Hi everyone, sorry I've been quiet lately. I've had a lot going on and we took a break ttc as we were going on holiday and I was just soooo sick of all the meds!

It's interesting that a few of you are also saying the more meds approach has produced less good results - as this has also been the case for me. First cycle on 5mg Letrozole I had two follicles to trigger and every cycle since Ms Edge has continued to up it so that my last cycle I was on 12.5mg - and yet I only had one follicle and my lining was pants!!

I was supposed to start a SO cycle with gonal f and Letrozole this time, with estrogen for my lining - but instead I decided to go private and have a laparoscopy done to check for endo... I just wasn't happy that CRP don't see this as an important factor to consider and my gut kept telling me there's something more going on.

My consultant found endo all around my ovaries, some on my ovaries and on my right fallopian tube. I also had lots on the back of my vagina! I've had it all excised so in recovery now and trying to figure out what I want to do next re ttc. Also interestingly, my left ovary, which normally does nothing on all the meds, was just about to ovulate during my lap - naturally!

Thinking I might try a couple of cycles naturally with pred and cyclogest only, but a bit scared to do this. I could go and get Intralipids locally too if I wanted to. I'm encouraged that you got pregnant on a break from the meds @Sophi81! X