Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

@Sezmarelda1 hey there! Yes its the first miscarriage on Dr S's plan but i haven't given up hope just yet. Process is just taking longer than expected which is so frustrating but still grateful to be able to have the opportunity to get tested, be given medication etc...

@HopefulH I just had my appt with Dr S and he said he didn't need to scan me as he was happy with the scan from EPAGU. He did say he would have liked to have tested the pregnancy for any abnormalities but because it happened so quickly over the weekend that we missed this opportunity. He said he would have recommended to continue on the same plan because it could possibly be a chromosomal issue but then also added i could try GCSF of i like. He did say its a good drug and is effective but then again he said that about the first batch of medication i tried and clearly that didn't work! I am in two minds now because it is very pricey and will end up costing almost £1200 on top of everything else.

Has anyone else tried this and it worked for them? Im going to think about it before i go ahead. I wanted to try again asap and I am having my miscarriage bleed now which means i will be ovulating in two weeks time but he advised me to skip a month because the egg that is released after a miscarriage apparently isnt a good quality one. So i will be continuing on HCQ until i start trying again in March 🙏🏻.

Sending love to all xx

@Hayley220 @SReyn Hey! Just wanted to check up on how you are both doing?

Had my 8 week scan today and baby is on track. Hopefully the medication is working but I will keep you updated! Have another scan in 2 weeks to check for any chromosomal abnormalities 🤞🏻 xx

@JessL12 oh my goodness this is amazing news!! Congratulations!
Jess how many losses have you had before and what stage? Sorry to ask, just want to compare them with mine in the hope that next time it will work on the hydroxy xx

Hi ladies,

Long time lurker here but I’ve posted once or twice before - hope everyone here is doing well as can be ❤️

No real point to my post just wanted to let my feelings out somewhere! I’m currently 22 + 3 and fell pregnant first month on Dr S complex plan for high killer cells, I couldn’t believe my luck after 3 consecutive losses and no loving children

Up until now our pregnancy has progressed well and we were so excited to be welcoming a baby boy in June. We had our abnormalities scan with Prof Akolekar last Thurs who flagged a heart defect called coartation of the aorta and wanted us to get checked out by a fetal cardiologist asap… yesterday we did and I don’t know what I was expecting to be honest - we’d been so conditioned to good news in this pregnancy that I thought it would really be ok

We found out baby boy, needs to have open heart surgery a couple days after he is born and I am terrified, which means I need to be induced so I can give birth at a different hospital which is joined with the Evelina children’s hospital in London

I can’t believe life would be so cruel to give us our rainbow to then find out he’ll need to spend the first 2-3 weeks of his little life in intensive care, I really am broken. The remaining 4 months of the pregnancy will be the easy bit as this condition doesn’t affect him in the womb, it’s knowing what’s waiting for us as soon as he’s born is the bit I’m struggling with - I was so concerned with not miscarrying that I was naive to think nothing else would happen

Thankfully it’s an isolated incident and the rest of his heart & body is perfect, but I’m just so heartbroken that I’ll give birth and he’ll be whisked away to intensive care, I don’t know how I’m going to cope xx

@Hopefulnumber4 so sorry you got that news. It’s not fair to have to go through so much to get to this stage and then have a diagnosis like that. Is the hospital you’re going to experienced in that kind of surgery? Sending love to you and your baby.

Thank you @Ifitistobesaid I keep telling myself I shouldn’t dwell and be grateful I’m here but like you said it feels so unfair

Yes, luckily it’s the best children’s hospital in London for heart surgery and they’ve said it’s something they do a lot of so that’s somewhat reassuring. As I’ll be delivering there now, I have to have all of my maternity care transferred meaning midwife appointments etc which is another stress, as we live on the other side of London! I’m sure I’ll be in great hands but I had such anxiety about being with my current hospital and not Dr S, I just don’t know how I’m going to adjust to another maternity provider - I’ve been letdown so many times before

Just so sick of being strong all the time on this journey

@Hopefulnumber4 im so sorry to read this. I can completely understand your frustration and anger at this happening after what you’ve already been through. It’s not fair. I’m so glad though that you saw Prof Akolekar. He is amazing and I trust him 10000% - he would never guide you wrong. Did the NHS pick up on this? Will the baby be ok after the first 2-3 weeks after birth? I think you need to see it as short term pain and long term gain. It will be so heartbreaking and difficult but as long as at the end of it your baby is ok and back home with you. Sending hugs xxx

Thanks for replying @Tgrf55 , if it wasn’t for Professor Akolekar we’d be none the wiser as the NHS missed it which is terrifying - so we’re very grateful to him as we’d of likely got home with baby and would have had to rush him back to hospital

Hopefully - I guess it all depends on how the surgery goes but if ok he’ll be home by 3 weeks and then yearly check ups for life, the hospital have said in cases like ours children go on to live a life without limitations so praying it’s the same for our little one xx

Hi @Hopefulnumber4 - I'm sorry that you're having to go through this and I'm sure it was a complete shock to hear. If it helps at all - my best friend had a baby in 2021 - they found out 2 weeks before her birth that she had a serious heart defect and the right side of her heart hadn't developed properly. It was absolutely devastating news - she will need life long care and v likely a heart transplant at some point. What I can say is that at the point of hearing that news - her parents were genuinely broken and the following months after her birth were really difficult. But they are so grateful to have her, know that she is getting the best care possible and she is the most beautiful, smiley bubble of joy!

I suppose what I'm trying to say is - having seen my closet friend go through a similar thing - things will get better and it won't feel as heavy and devastating as it does right now xx

Hi all, for those of you on aspirin for recurrent miscarriage, when have you been advised to stop taking it? Prof Quenby told me to stop it at delivery, but an obstetrician at my local hospital (not a specialist in recurrent miscarriage) has told me to stop it at 36 weeks. I queried it but she was insistent. I'm inclined to follow Prof Quenby's plan to stop at delivery but just wanted to get a sense of what others had been told to do.

@star2022 that's really lovely of you ❤️ thank you. Its been so long now 😪 think me, you and @Zest11 have similar nk diagnoses.
My activation is Hugh at 3.05. He didn't seem to find much else. I was initially on just hydroxy and ovulation intralipids but at my 3 month review we were coming out of lockdowns and he added pred.
I think I'm pretty much on everything now.

@Hopefulnumber4 I'm so sorry to hear your little boy has a heart condition. I'm so pleased that this has been picked up. Its incredibly cruel that this is happening and I just wanted to send you lots of love 💙

Xx

Ffs. Is anyone else having problems posting! It's doing my head in. Grr.

@star2022 @Zest11 x

Thank you for your kind words @SReyn & @VenusStarr ❤️

I know he’ll be ok, if he’s anything like his parents that have fought so hard to get to this point he’ll be a fighter too

Its so hard being on the wrong side of the statistics all the time xx

@Hayley220 Thank you! So I previously had 1 loss at 7 weeks, one at 9 weeks and then found out at my 12 week scan baby had abnormalities. So we still have a way to go! I have my 10 week scan in 2 weeks to check for abnormalities so that’s next to work towards, I will keep you updated 🤞🏻 xx

@JessL12 sorry I didn't reply to your message. Read it and was so happy it's going well so far. Have my fingers crossed for the next one :-)

@VenusStarr can I just echo what star has said? I recognise your name from some of the threads when I was on mumsnet in 2019 ttc our first. The journey is so relentless and I am so sorry you are still here. You areso strong, infertility actualI y broke me then so I commend how strong you are. I really really hope that 2023 is the year for you and the 6 month break has been helpful for your body. In fact, I hope it all works on your first go after the break! Xx

Hello everyone,

I have not been in the forum for a few months. Last time it was in August when I had a miscarriage on Dr Shehata’s complex plan (same as with my daughter who was my 4th pregnancy). Dr S put me on hydroxy and ovulation intralipids on top of my previous medication. I found out I am pregnant again a couple of weeks ago but today at the 6 week scan we saw that the sac is tiny (more like 4 weeks) so I have another appointment next week to confirm that the pregnancy is not viable and discuss next steps.
it was mentioned that potentially next steps are the GCSF injection after doing a few tests and sperm fragmentation.

I know that some of you are on these injections. Could you share your experience? How often do you get them? Do you have any side effects? I never had much side effects with pred and intralipids (other than the moon face) but hydroxy is quite harsh on my body (I am also losing hair) and I would like to be as informed as possible before I agree on anything extra.

thanks a million!

@Zest11 I'm 33 trying for my first, how about you? Mine are so similar to yours, my activation was 1.01 so was classed as high, and the other toxicity one was at 24%. Have you started taking your meds yet? Or will you wait to do another retrieval? It does sound like us 3 are in the same boat with @VenusStarr having normal nk cell count but high activation.

My AMH last year May was 17 (although during ivf they couldn't understand why my amh didn't correlate with the number of follicles I was producing which was low) and now with Dr S my amh last month had dropped to 10 which he said was still good but it's just so worrying.

@VenusStarr can I just ask if you're on hydroxy and prednisolone what dose and when are you taking both of these? And will this be alongside letrozole too for your SO cycles? it does worry me being on prednisolone in case it affects my ovulation or cycles as they're super regular but if hydroxy alone doesn't work for me, then he may add the steroids too.

Thank you @Zest11 🥰 that's really kind of you. I definitely haven't felt strong but this break has helped me I think.

@MrsMargot I am so sorry ❤️ gcsf is part of my protocol now after I have a loss of a healthy baby on all the other meds. I've not been pregnant since though. I have injected a few times. No major symptoms really, but I think I noticed more fatigue type feelings in my legs. It's expensive. You start at 6dpo and then it's every 3 days- up to 10 weeks. I know of 2 people who were prescribed it by Dr S after a similar history to me (no infertility though) and their pregnancies are continuing.
I can't get it locally either, so I use the Pearl chemist near CRP which is probably more expensive but they get it same day. Asda said they'd order but weren't sure they'd get it 🤷🏻‍♀️ Lloyd's said I had to pay upfront but couldn't guarantee the price until I'd ordered, so clear as mud.
I also think for the price, it looks like a really flimsy injection. But it's not stingy or painful like fragmin and I don't think I bruised with it

@star2022 my protocol is hydroxychloroquine 400mg a day. Then 25mg of pred. When ttc naturally I start it around ovulation. I also have ovulation intralipids. And I will be doing all that, plus aspirin and gcsf when I start ttc again with letrozole and gonal f. I'd actually forgotten all the meds! It's pretty crazy to have to do all that just for a chance. Xx

@VenusStarr thank you very much for sharing your experience. I thought that you get the shots from the clinic. I have not had the experience of going around to pharmacies yet 🤓. It is coming as I can see.

I was putting it on Google online and it said that it is a cancer drug. It must be a different one. I am not sure how the two correlate. In any case, I will do whatever he tells me to do. It would be great to get some answers as to why the heck it is happening. This time is extremely similar to the mc in the summer and this time I was on hydroxy and ovulation intralipids. I keep on thinking that it might be something else but no clue what…

That's ok @MrsMargot I forgot, you hace to get your bloods taken every 2 weeks when you're on it as well. In my ivf cycle last year, my GP called me late one Friday evening in a panicked state checking I was alive! Because my neutrophils (think they're related to white blood cells) were sky high and indicated sepsis 😵 but I think that's intended because the clinic weren't concerned at my levels. I felt totally normal though. The GP wanted me to go to A&E there and then, but when I told him the drug, he looked it up and we ended it on a promise to visit the hospital if I felt in any way poorly. Can't believe I forgot that!

It's really hard when there's not a clear answer to why the immune meds aren't working x

Hi everyone,

Has anyone tried GCSF and had any success or knows anyone is that sort of situation? I have been researching for days now and cannot fond any actually evidence that it proves effective for treating recurring miscarriages so i am a bit skeptical to try it.

Also i am reading a lot on here that people who cannot take pred or intralipids are advised to take the injections but he has put everything in my protocol and I am just wondering whether this is necessary? I was hoping to skip the ovulation intralipids because I'm taking the GCSF injections...

Hi @comingsoon786110 I shared a bit uphread about my gcsf experiences. Like you, I'm on it all. I lost a healthy baby on pred from ovulation, hydroxychloroquine, intralipids at ovulation, aspirin, fragmin, lubion and cyclogest. So I don't feel comfortable trying the same protocol again. I know anecdotally 2 people who used gcsf and are well into their pregnancies now. I think a similar drug is neupogen and Dr Gorgy uses that a lot. I think there are more studies about that than gcsf.

My understanding is that hydroxy and intralipids are immune modulators, pred is an immune suppressant and gcsf works on your white blood cells / immune responses. X

@VenusStarr you are a fountain of knowledge. Thank you!
very much like @comingsoon786110 i was not finding much online.

I like the anecdotal evidence a lot but the shots still scare me. We have a bit of a disagreement with my husband as to whether it is necessary to take more drugs. He thinks that the issue is potentially something else (sperm quality. We will be testing next week) because the two pregnancies, the one in the summer (I was on pred and intras on positive pregnancy test plus progesterone and aspirin) and the one now (I am on pred, hydroxy, ovulation intralipids, progesterone and aspirin) are exactly the same. Or rather had the exact same failing trajectory. He thinks that the additional drugs did not make any difference so potentially the issue is different. We shall see. I am so desperate that am ready to try anything. I am now on 5 loses. 3 before my daughter and 2 after. ..

@VenusStarr thank you for the clarification! Im in exactly the same boat as you. Because i miscarried on the protocol without GCSF, my husband and i don't feel comfortable continuing on the same medication in case it happens again. It is just so eye wateringly expensive along with the intralipids it scares me in case it fails again!

He has told us to wait until March to try again but I have a hysteroscopy booked with Prof Regan in mid March because i had a 3D scan and she said my uterine cavity may be mildly arcuate or heart shaped. I told Dr S about this and he was super adamant for me not to get it. He said he has had patients that got it and it did more damage than anything else and damaged their tissue so much so that they couldn't even get pregnant! He said the uterine thing is a minor issue and is not causing the miscarriages at all and he actually told me i would regret getting the procedure done. He said have the procedure done if you really want but do not let her alter the shape or try and 'fix' your uterus.

Prof Regan also told me to stop taking aspirin which I have been taking since October under Dr S's instructions! She said aspirin can sometimes be counterproductive preconception or pre-pregnancy. She said she would then need to recheck my thromboelastogram parameters.

Im so confused as to what to do now...the time i have my procedure for is the same time as my March ovulation so does anyone know how long the recovery time is for it if i do go ahead and will i still be able to try in March? Also if i refuse the hysterscopy will RMC at St Mary's no longer investigate my miscarriages because i am refusing treatment?

Sorry for the long post everyone but i feel like you all have the best answers and advice and i feel like we are all virtual friends ❤️🫶🏻