Immune/NK cells pred thread #31

@Deerdancer34 hope you are recovering well
I'm sorry to hear that it was a bfn @VenusStarr
Ive found out that my th1/th2 levels have hardly come down which now makes me think it's just not going to work!! I guess I will have to repeat the humira and wait again. Will have to see what Dr S says. But my th1 hasn't even come down 0.1 my levels are exactly the same!

Hello everyone, well I've been officially discharged from hospital after my Ectopic, thank you for your wishes & allowing me to vent before I really appreciated it. I've signed up for talking therapy so that should help.

It's nice to see some of the positive stories, gives some hope that all this may work sometime. So far I have just followed the plan and done what I'm told but I'm wondering about ovulation intralipids. When I look back at my results, intralipids are supposed to reduce my killer cells by 88% but after 6 cycles, I'm just wondering if they are worth it... but also if I don't do them, then I'll probably wonder if that's why I'm not getting pregnant if it takes time when I start up again... How do you approach Dr S about not doing something such as intralipids because when I tried last time, he basically shut me down and said everyone follows the plan...! Not sure what he'll suggest after this! Bit nervous about the thought of Superovulation, not sure I want to be triggered with a large follicle because I can't help but feel that's why I had an ectopic, probably not the case at all but I couldn't understand why I was triggered when follicle size 'wasn't ideal!'
I'm a little bit behind so I do hope you are all ok. I'm so sorry @VenusStarr that it was BFN, I'm sending you lots of love & hugs 💞

@VenusStarr thanks for the check in. I'm sorry to read how you are feeling. It is so disheartening and really consumes your life. I'm just in the waiting to try camp. On complex plan plus pcos meds but Dr S wanted me to have repeat th1/th2 bloods after my 1st course of humira. Been on hydryo since 1st apt so hopefully in my system once we start trying. Has my hysteroscopy which was clear. Just hoping my levels have come down and don't need humira again. Will then have intralipds and pred once trying. The hydroxchloine make me feel a bit rough and no matter what I drink with the coating sticks in my throat!! Sending wishes to everyone. It isn't easy and I'm not sure how much I've got in me to continue after 5 miscarriages but haven't tried the immune treatment yet so hoping this works quickly!

Thanks for all the congratulations. I am both delighted to be pregnant but convinced I've messed up my chances. The thing I really don't like about all the medication is that sense of not knowing if it was that drug or approach which what makes the difference. I'm making decisions based on fear rather than confidence right now. Which is different to my first pregnancy (but even saying that - what a lucky position to be in).

@Sophi81 congratulations on the birth of your little one. @NessyT91 I also remember you and congrats on your pregnancy. That's great you've been able to get intralipids from your doc.

@VenusStarr thanks for starting the new thread and hello again. And hey to everyone else on this gruelling journey. I'm always grateful there's a community of women to talk to about this very unique and challenging experience. Sending love. ❤️

@VenusStarr I was buying nivestim brand for £246 from Asda and £300 from Tesco. My last batch I ordered from Tesco and they gave me the Zarzio brand for £60! I asked them to double check if that's correct as I didn't want to take the wrong medication. Pharmacist double checked and said it was correct so I took it 🤷🏽‍♀️. I compared it to the ones I had at home and they were exactly the same just the box was different packaging.

With my first pregnancy I was under the care of Dr S but with my second I was only seen by Dr E so yes she was reviewing my plan etc

@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

@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 😬

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

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

@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

@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 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

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

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