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!

@RumandSpinach if you can get all your testing done before seeing mr S you might find it works out the same. You have to wait to TTC until you've had all your tests results and plan etc anyway. My first consultation with Dr S was just talking about what test he can run and why. Then I have had the tests and then repeat for one of them to see if my levels had come down (this is for the th1/th2) which my understanding is not everyone has this raised so do don't need repeat and can start trying. I now need to have a further 2 injections before we can try so will be another cycle. It is so frustrating but I'm trying to stay logical that it is better to wait and have your body ready to carry. All in all it will have been 3 cycles I've missed trying whilst waiting for appointments and results etc. Just to prepare you mentally even going private with Dr S isn't quick.

@Privatemedical246 oh no!! So sorry you've had to wait so long😫Does Mr S give you a choice of protocol at all? I think I can have a sensible chat with myself to wait until September but I can't deal with the idea of waiting longer 😭

@RumandSpinach not a choice as such but I guess you can say no to certain drugs etc. I guess he can't stop you trying but he does get you to sign to say you agree not to try whilst having tests etc.

In the end I cancelled my appointment. I don't think CRP is for me but I may well almost certainly change my mind. I think it's hard to envision ttc actually being successful and I don't really want to add being broke to my list of woes. I'm going to start saving up though and either spend it on CRP treatment or a really good not pregnancy friendly holiday.

Anyone mind if I stick around and whinge about ttc after a long list of losses?

Also - does anyone read "crap" everytime they read CRP? I don't think they are crap but it's a curious name to choose!

Hi everyone, hope you are all doing good!

Just thought I would share something with you following a discussion I had with a nurse in my EPU. Not sure if anyone knows but recently NICE guidelines have changed (March 2022) and anyone who has suffered from a miscarriage gets prescribed with progesterone up until 16 weeks gestation.

This whole time I was buying it from Dr S (and it is defo not cheap, about £22 for a box of 15 pessaries) which only lasts about a week. I only picked up my prescription since my April miscarriage so will definitely be doing this going forward.

I think they do have to do a 6 week scan on you though and confirm a heartbeat. Everyone EPU is different though and mine gives it when they see a positive urine test so its worth asking for!

At least thats a bit if money we can all save xx

@comingsoon786110 thank you, that is really great to know! In case it helps anyone else, I went to my GP yesterday and he was happy to prescribe me all the medication Dr S prescribes (pred, omeprazole, Cyclogest, and metformin). Which will save a lot as was nearly £200 last time for a 3 month supply. He said he was happy to help in any way they could (including doing all the 3 month blood tests that CRP request). I went into the appointment feeling like he'd question it and I'd have to really make my case (was preparing to point out how impossible I've found it to get a referral to the NHS recurrent miscarriage clinic) but it was a nice surprise. Definitely recommend to everyone to try and get your GP to do the same, we need all the help we can!

Sorry for the late reply, I keep dipping in and out as its been a busy few weeks!

@Deerdancer34 That really is unusual isn't it regarding the letrozole and higher dose? It seems more common than I thought! Where about are you with your SO cycles? Have you started 10mg or are you in a two week wait currently? And is your plan to do the full 6 months?

I'm also a little peed off because at my last scan dr edge was going through all my follicle sizes for all the cycles I had and she said only the first cycle had ideal follicle sizes at trigger (19/20mm) the rest were a little too large even though they made me trigger and have intralipids. If they weren't the ideal size, why wasn't I just told to abandon the intralipids/trigger as I ovulate on my own anyway, seems like a waste of money. I also hadn't been told to come in any earlier for the scans to avoid them going over 23mm..

@Sophi81 I'm really intrigued by this too! I can only wish something like that happens to me! Unfortunately, I just don't seem to be getting any bfps naturally at all in all this time we've been trying (4 years). However, I have also seen quite a few stories from people who stop their meds and suddenly become pregnant. So who knows, lets see what happens! Thanks for sharing your story 🤞🏼

@VenusStarr How are you feeling since deciding to take a break? Glad you've managed to get the ball rolling with ivf, it's weird you said that about being on more meds causing your body to shut down because i feel exactly like this too! If I had ivf again, the issue I need to explain to these consultants is that my body has no problem growing follicles, if anything they grow TOO fast and I feel like all these clinics go hard on medicating us with high dose stims, which I feel does the opposite to what I want or need. Its hard to explain it to them as I don't really have any scientific evidence except just my history of how I've responded before and even seeing how I respond with letrozole makes me question it all. It's almost as if I need stims every other day to make sure they grow slowly and evenly if that makes sense. I just really hope I don't have to cross that bridge and really hoping these SO cycles work although I do feel more and more hopeless as months go by.

Currently in my 2ww, test day is next week but we've booked a few days away when its test day to either 1. celebrate if it works, or 2. have a good distraction from the upset lol. I also second @Lily1990 I get all my meds and bloods done from my GP but I understand this isn't always possible but its a worth a try! xx

I'm jealous of all your lovely GPs @Lily1990 @star2022 ! Mine does do my 3 month bloods but has categorically said no to meds. They wouldn't even prescribe progesterone when I was pregnant with my 6th baby! Still upset about that. Good to know I could get it for any future pregnancies @comingsoon786110 thanks for sharing.

That's frustrating @star2022 I definitely feel like we should question things more and not be pushed into the protocol if there's not really any hope there. Keeping everything crossed your mini break is a celebration ❤️

Hope you're getting on OK @Lily1990

Yes stick around @RumandSpinach are you going elsewhere or ttc on your own?

I feel like I'm institutionalised with the immune stuff now and scared to try on pur own, even though its not worked out at all!! 😭

Feeling impatient at the moment but just trying to relax knowing there is a plan. X

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

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 💖💖💖

@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.

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.

Hi @clhiu glad you found us over here. It's a bit quiet at the moment but quite a few of us are under CRP.

How did your scan go? What day do you go? I've done 4 superovulation rounds now and only 1 really was a textbook cycle (but bfn). First 2 I didn't respond well. The last one I only had 1 lead follicle but Dr Edge said it was likely on the cusp of too mature (22mm) and the other 2 were likely too small (15/16mm).
We've decided to stop superovulation now and I think I'm going back to do one final ivf round and then we'll stop. So on a break for a while, still going to loosely try ourselves but I'm not doing ovulation intralipids or anything, I'm only taking hydroxy, I'm tired of endlessly trying and not getting anywhere. We've got to save for ivf so unlikely to do it til later in the year or early 2024. I've got an appointment at my clinic the day before my 40 birthday 🙃
Haven't really answered your question, sorry! I do know superovulation has worked for others. Dr S says cycles 4-6 usually work. I just find it quite emotionally taxing and quite expensive. We spent £1200 last cycle with all the meds (I'm on gcsf as well).

How are you getting on @star2022 I hope you're feeling OK ❤️

@Deerdancer34 how's things with you?

@RumandSpinach are you ttc straight away? Whereabouts in your cycle are you?

I hope you're recovering well @HopefulH I'm glad you got checked and hope it helps.

@Zest11 hope you're OK.

How's thing @Lily1990 @Privatemedical246 @comingsoon786110 @Newbeginnings22023 @nottsgdns ❤️❤️

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??

Good to hear from you @Deerdancer34 I hope you have a good break. I know that dread feeling. When the ivf clinic messaged a out the appointment I thought I don't want to do this.

We're actually off for a spa today, having a massage later then dinner. I feel quite anxious at the moment about work, got a few things that are quite stressful so today is much needed! X

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

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

@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

@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.

@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.

@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

@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

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.

Good to hear from you @star2022 I'm so sorry this cycle didn't work ❤️ you've done amazingly to do them consecutively. I'm sorry af is awol though. That's so strange that that happened last time too. Did Dr Edge say why that happened? It's really frustrating to know its negative but not being able to start your new cycle. I usually come on within 3 days of stopping progesterone.

Appointment with the ivf clinic is 29 August, 2 weeks today. We'll have ro start from scratch with bloods etc, so want to know what we need. I also want to talk about finance options as we can't afford it outright with the immunes on top. The consultant were seeing used to run a recurrent miscarriage clinic, so hoping she'll have some ideas and empathy for our situation

It's definitely worth trying with your GP about funding but I'm not sure if you'll have to go back through the system and if they'd make you wait 2 years. But see what your new GP is like. Some are definitely better than others!

I don't think I've ovulated this cycle 😕 never happened before but my temps are all over the place. I was sure I had last week but now less convinced. I'll just have to wait and see if she turns up. Am tempted to start progesterone to give it a kick start.

I know what you mean about the meds @HopefulH I think they're preventing natural pregnancy for me now. But I'm too scared to not be on anything at all. I wouldn't worry too much about intralipids, I always reassure myself that he doesn't use them in his NHS clinic and has success there. Plus you'd only miss the ovulation one. Fingers crossed for you.

@Newbeginnings22023 I'm sorry about af arriving early, hope its manageable. How lovely that you've got a 3 week break. Hope you have an amazing time.
I completely get what you're saying about it all being too much. There's so much waiting and preparation.

How are you getting on @clhiu good news about your scan. Your lining is fab! Mine is crap on letrozole, was only 6.5mm last cycle, with estrogen as well. But my natural is only around 7/8mm. Keeping everything crossed for this cycle for you. Its pretty soul destroying to try so hard and it not end how we hoped ❤️ xx