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!

Hi everyone, I hope you are all good and well. Sorry I haven't been active for last couple of months as there's been a lot going on. I wasn't sure whether or not I should post this as I know it can be upsetting for some but at the same time I thought as I have been going through this process too it's always nice to hear of success stories and it gives u hope that it can be a positive outcome.

So as most of you already know I was pregnant and we welcomed a beautiful baby girl on 3rd July so she is now 3 weeks old. This is my second successful CRP baby and although she was born quite small at 5lbs 1ounce, she is very healthy compared to when my son was born at 3lb 10ounce. I'm guessing it was the GCSF that worked to put the weight on baby number 2?

If anyone has any questions they want to ask feel free to message me and I will try and answer if I can xx

@VenusStarr i think thats a great idea and I am actually doing the same! I think you need to give your body a break from the super ovulation and you have gotten pregnant naturally before right? So you know your body is capable of doing it again.

I won't be doing ovulation intralipids either and will not be doing gcsf. Im taking hydroxy but wont start pread and progesterone until about 5DPOish.

Congratulations @Sophi81 💕 wonderful news that she's here safely. Good to hear of a gcsf success too. Did the side effects of gcsf get better? Last week I felt so awful.
Thanks for coming back and sharing.

@comingsoon786110 good to hear from you. I have been pregnant naturally but not for a very long time now. And I don't think this cycle has worked either. My temps are nice and high, but my resting heart rate is low. Even though my heart feels like its racing but I think that's the pred.
I think the only way I can do this is to have breaks. I don't think I can run straight into another full on cycle.
Did you say you've got an appointment with Dr S soon?

@Newbeginnings22023 glad to hear you have a plan and a holiday planned ❤️ hope your appointment with Dr S goes well next week.
Thank you for the reassurance about activity. It does wonders for my mental health. I think if we do ivf I'll have to stop / massively ease off, but will cross that when we come to it. I always think of those women who have no idea they've ovulated and conceived just carrying on as normal. It's just being so in tune either my body I can't not know what's happening.

Had such a restless night, don't feel rested so must be the steroids. X

Congrats @Sophi81 soo happy for you!!

@VenusStarr yes my appt with Dr S is on Wednesday and I started my doxycycline in Saturday for the infection. I hope it clears up whatever I have.

Sometimes being so in tune with your body can have a negative impact because you start obsessing over every little thing which isn't healthy. Hmm, I'm sorry you think it wasn't a successful cycle. When is AF due? Will you start testing early?

@comingsoon786110 🤞 for Wednesday for you.
I actually had a dream I tested today and it was a faint positive but I knew it was trigger. I absolutely hate testing, my date is Saturday so will probably hold off. I don't have any tests at the moment. I'm undecided what to use as I can't get frer in the shops but don't trust the Amazon ones. But clearblue are a bit shit. What do you use?

I started off to work today and realised halfway there that I was supposed to be at a different site 🙃 not a great start to Monday!

@VenusStarr thank you 😃. I didn't have any side effects that I can remember from GCSF. What side effects are you experiencing?

@comingsoon786110 thank you xx

@VenusStarr I can always find FRER in my local Boots so that's not an issue for me. I test with a variety once i see my faint positive on a cheapie. Most of the time Premom but this time i ordered Wondfo because those were the ones on offer on Amazon. I use the clear blue digital as well just to make sure my HCG goes up but i have never gotten past the 1-2 weeks one since my last pregnancy.

I still have 3 GSCF injections in my fridge so i might use them up if i get pregnancy again. Dont want to waste them!

@Sophi81 I find they just wipe me out, I felt so run down last Tuesday and quite dizzy no energy and really achey legs and lower back. I took one on Friday as well and it was milder, just achiness in my bones and lethargic.

@comingsoon786110 all my go to shops have stopped selling frer. So annoying. I don't trust Amazon ones, had a few dodgy ones from there.
I don't blame you on the gcsf, its expensive! I've started buying through crp, they can arrange next day delivery for only £5 more than I was getting it at a pharmacy in Epsom.

How are you @star2022 do you have a scan this week? X

Hey @VenusStarr how are you? Those injections sound horrid, I can see why you don’t like doing these cycles back to back! I find the letrozole bad enough as it is. I’ve got one more dose tomorrow to take (I’m on a higher dose this month) and I can’t wait to stop them, they make me feel so weak in my bones, lethargic and I get really bad anxiety In the mornings that it makes me weepy! I’ve got my scan on Thursday this week yep! I’m trying so hard to be positive and hubby is always telling me off for being negative but I just can’t help it after being on this journey for so long.

let’s see if a higher dose does anything different 🤞the only thing I’ve found is my period has literally only lasted one day this month which worries me in case my lining is too thick.

I use the frer from Amazon which have been fine for me although they’ve made them more expensive 🙄 but I also tend to use Premom strips which are very accurate I’ve found and much cheaper.

I’ve got my fingers crossed for you for Saturday xx

Hey @star2022 I'm doing ok, resigned to this not having worked again. I'm quite stressed about a few work things and got a lot going on - I'm so busy over the next few weeks, I don't think I actually have time to be pregnant so I'm hoping for a sod's law!

I thought I was definitely a no superovulation next month but I've decided to wait to see if / when af arrives, if it's Monday, I can't really do it but if its after Tuesday I can make that work. My head is spinning with do I want this again or just give it a try.

I really hope that the higher dose gives you some good follicles 🙏 I don't tend to bleed for more than 2.5 days. Hopefully you've cleared the older lining. I'll be thinking of you on Thursday.

I've ordered some easy at home tests, even though I hate testing, I don't know whether to test early or not, they're coming tomorrow. The earliest I've ever got a bfp is cd21, which is Thursday. But I also have had lingering trigger so don't know if its a waste. I hope I can sleep tonight, I feel a bit wired (can you tell?! 😬🤪) xx

@star2022 @VenusStarr I'm sorry to hear the medications are making you feel unwell. The only drug that gave me side effects was hydroxycloriquine! I absolutely hate that drug and stopped taking it quite early on due to severe hair loss! Thankfully my hair has now grown back twice now. The only thing I didn't like about GCSF was the price and injecting myself! Other than that I was on quite a lot of meds but felt ok.

As for Letrozole, this didn't work for me second time around. I was on it for 9 cycles and the one cycle I didn't take it I got pregnant. Whereas last time I got pregnant first time on it. So bizarre!

Thanks @Sophi81 I hate the taste of hydroxy, its like hairspray 😖 glad your hair has recovered.
I don't mind the actual injection, but cost and the after effects are a big no thanks.

I've broken my own rule and tested with an easy at home today, 8 days past trigger and there's a faint line which I still expected... which I think would be gone by tomorrow, so that's interesting that I had lingering trigger at 12 days past last time and its actually making me wonder if it was something more...
So that's my marker. Undecided if I'll keep testing, or just wait and see.

Hope everyone's OK xx

@Sophi81 can I just ask, you said you conceived between superovulation cycles. Did you follow your immune protocol or was it a surprise bfp and then you started your meds? I'm wondering what to do next month... x

@VenusStarr I’m still often thinking of you. Have you ever considered Tacro? xx

Thank you @StillTrying10000 ❤️ I'm not sure, it's not been suggested for me yet. I just can't get pregnant anymore so I don't even know if the gcsf is the extra thing that would help now. The intensity of tacro puts me off and the extra money. We've spent so much already. I was looking into ivf again and whether I want to spend another £15k for a chance and I don't know. If there was a guarantee of course I'd do it. But I'm never on the right side of the statistics and it's getting harder to push through that.

I'm still undecided about next cycle. But if I do go ahead with another superovulation, I'll have a chat with Dr E about the gcsf as it makes me feel quite ill, so I feel like it's working but I'm still not pregnant. But also taking progesterone later, someone suggested that was an option.

I've been awake since before 4am. Too much time to think. It just feels like a massive set of hurdles to even get pregnant, get past 6+2, get to 12 weeks with a healthy baby, get past all the milestones and have a healthy child. It feels impossible at the moment 😪 xx

@VenusStarr gosh so tough. The drug itself was cheaper than GSCF (about £300 for 8 weeks and I’m overweight so required a lot more than smaller women) but it’s the two weekly blood tests that added up in £. Sorry unsolicited advice but if you did decide to go for another shot at IVF I would really recommend the Tacro alongside it. It’s the plan Create Fertility in Epsom use for women who have had 3 failed rounds and I’ve spoken to a few of them now it’s worked for. Good luck and well done for keeping putting one foot in front of the other every day! I’ll keep thinking of you xxx

It's not unsolicited @StillTrying10000 I do appreciate it ❤️ interesting about Create as that's where we'd use for ivf. So good to know. I think with our history and technically 2 full failed ivf cycles on top maybe I would be a candidate.

It's just planning in when to do ivf and money etc. Realistically we could do November but money wise, that might be tough as we've spent some of our savings on house improvement, sick of waiting!

Thank you lovely. Hope you're OK xxx

@VenusStarr would you try IVF through CRP & Kings or go back to Create? Create give the Tacro for 4-6 weeks whereas Dr S wanted to give it until week 16 I think (I kept on it until birth though). Kings were amazing. There’s a brilliant programme filmed there Alex Jones: Making Babies on W and UKTV Play

@VenusStarr i was given tacro by Dr S at my appt yesterday. He said my 6th loss with gcsf could be down to abnormalities but he says this every time. He then suggested this and i agreed right away.

I have to have weekly blood tests (£180 a pop) until he is happy with my levels and the fortnightly. He said he keeps people on it until about 12 weeks but suggested longer for me as i keep miscarrying on every other medication. Will see how this works.

I have been stressed about the financial impact since my appt yesterday but what else can i do. Like @StillTrying10000 mentioned the medication costs less than gcsf but the blood tests make it suppppper pricey.

P.s this medication is replacing gcsf.

I really do feel for you and i am so sorry you are feeling like this. For my next cycle i am thinking to go natural until a few days after a positive test. Plus i am only going to take one 400mg of progesterone and not two. Also i have stopped taking aspirin xx

Hi everyone, I have lurked here for a while and posted again back in October. I've had one DS on Dr S' plan who is now 2 and we've been trying since last year. I'm 38 in August.

Brief history -
late miscarriage Feb 2019 at 19wd - healthy baby girl.
Miscarriage Aug 2019 at 11w - female chromosomal abnormalities
Miscarriage Jan 2020 - 9w - trisomy.

I used this thread a lot between that loss and the birth of my son.

May 2021 - healthy boy at 39 weeks.

I was a bit reticent about posting but I know how much it helps people who are trying. I've got my BFP and I'm about 5 weeks. I'm on hydroxy, Progesterone, Aspirin and had Humira last year. I'm not on steroids because I was supposed to be ovulation intralipids - but didn't get there because I was a bit despondent about the whole thing. I've considered just winging it with the NHS without intralipids but I've got scared and I'm going to CRP for scans and treatment. Not feeling really sure about everything working out but just have to hope for now. X

Hi all,

I’ve also been lurking, having previously posted on this thread a couple of years ago. I went to Mr Shehata in 2020/21 after three early miscarriages. My little girl arrived in January 2022. I was on the complex plan - hydroxychloroquine, cyclogest, aspirin and intralipids.

We started trying again at the beginning of the year. We don’t live in the UK and it’s too complicated for us now to travel to CRP for treatment so we are under a Dr here in Ireland. That doctor suggested trying without immune protocol as I didn’t have raised white blood cells. I had a MMC at my usual stage (5/6 weeks) in Feb.

After that I convinced her to put me on the plan that worked previously (hydroxy, aspirin, cyclogest and intralipids). I’m now 5 weeks and absolutely terrified. Do not feel pregnant at all…

how are you feeling about everything @KtAgs? I definitely identify with feeling despondent… I really hate this stage before the first scan. I think I remember you from the thread previously. Congratulations on your little boy.x

@StillTrying10000 we looked into ivf with crp but they would put me on high dose stims and I'm hesitant about that with my low amh. Plus the travel would be too intense. I live 3 hours away and just the thought of juggling it all just puts me off.

That's interesting @comingsoon786110 I haven't seen Dr S for months. I think I'm leaning towards another superovulation cycle next month so I'll have a chat with Dr E but I know she won't be able to just change meds, but would be good to get some info.
Do you have one of the information sheets, or is it available online do you know?
August will be just ttc naturally and no ovulation intralipids.

@KtAgs congratulations 💕

Trigger is definitely out of my system and no sign of a bfp. I've got easy at home tests and they seem to have bad indents which is annoying. If I ever get another positive pregnancy test I think I'll go into shock, so used to the same old crap.

How did your scan go @star2022 hope all is well ❤️

How are you getting on @HopefulH did you resolve your kidney issues? Hope you're OK.

@Zest11 @Privatemedical246 @Lily1990 hope things are good with you xx

@VenusStarr I was on a break for a month as CRP had over stimulated my ovaries and I was in a lot of pain. The next month crp asked me to come in to review my plan as it wasn't working out and we noticed on day 23 I had not yet ovulated so Dr E just triggered me and suggested we try as there's no harm plus we had missed the timing to take Letrozole. We tried not expecting anything but we got pregnant shockingly and continued with the complex plan with GCSF.

GCSF is very expensive, I think I was paying £250 but then my last batch only cost me about £60 but was a different brand so that was surprising. Wish I had known that sooner could have saved more money 😬

Blimey, where did you buy it from @Sophi81 I bought it through the clinic this time as nowhere locally seems to be able to get it. But its £390 with next day delivery.

Did Dr E do your review then? I thought it was just Dr S. I'm just trying to work out timings for going down next cycle. I usually ovulate on cd10 so not sure the letrozole is adding much but it's so far to go just for intralipids. I can't decide what to do. I might just do superovulation again and then cry and see if they have any other suggestions to get me pregnant.

@KtAgs congratulations! I have my fingers crossed for you. I also had my first child with CRP in May 2021. He is now 2 years old. I have just recently had my second this month after trying for nearly a year with CRP. I am now 42 years old and have history of 4 miscarriages prior to 2021. I didn't think we'd have our second child as we had tried for ages and considered IVF but the month before we finally got pregnant. I too didn't have any pregnancy symptoms bcos of the steroids I think. I was on a lot of meds this time around compared to my first, metformin, aspirin, GCSF, Cyclogest, steroids etc. plus I was a lot more ill and was on antibiotics 3 times due to catching bugs from my son rather than the pregnancy itself