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!

Happy stories galore :)

@Deerdancer34 - would you mind sharing which charity you went through for counselling? I've had a lot of trauma in recent years connected o fertility treatment and need to get my head in shape for number 2. Tried to get the free counselling through work yesterday but apparently my issues are too complex for what they offer!

I had success on my first ivf fresh transfer in 2021, on dr S's protocol; inofolic alpha, metformin, hydroxy, vitamins and intralipids. Now trying for number 2. :)

@Pupsandturtles super ovulation is where they use drugs to stimulate your ovaries to produce more than one egg hence giving you more of a chance to conceive. This can sometimes lead to multiple pregnancy which is what happened to me but lost the one twin. So you take a pill for 5 days from the first day of your period and then you have a scan a few days later to see how the medication responded. You are then advised on when to take the injection to release those eggs and have timed intercourse. It's not an invasive procedure which is why I decided to try it in the first place. But as I said before it worked first time for me but not for my second pregnancy!!

Thank you for the wishes, I'm happy to be this far but also terrified for the next scan next week in case bad news strikes, time is seriously dragging! How do women normally wait until Week 12 for a scan!?

@Pupsandturtles Dr S is all about Natural Killer Cells and this seemed to be a sensible suggestion in my case since it seemed to me I couldn't hold my babies as I lost them so early. So, a blood test established elevated NK cells hence the Humira. I had 2 jabs 3 weeks apart and then another blood test to check NK level had reduced, which it had. When I began, I had to do 3 months of no trying but take the vitamins, COQ10, aspirin to prepare the body ( & did the Humira during this prep phase). Also happily the Humira has reduced in price as their patent expired so big difference when I did Humira in 2023 compared to 2022!

So then I took my medications (pred & progesterone, intralipids) for 10days from ovulation and then pregnancy test, if positive you continue, if negative you stop.

After the 3 months of trying naturally with the medications you have a review appointment & I think they could see I was broken and they suggested Superovulation, so I didn't do IVF as I can conceive. Superovulation is less invasive and as @Sophi81 explained it gives you more chance to conceive as you produce 3 follicles instead of 1 follicle. It's hard because it is trial and error - working out the letrozole dose, not knowing how your follicles will respond or when because my cycles got earlier and earlier so I had to change my scans to be even earlier so I didn't miss the chance to trigger the follicles and obviously you are paying every month not knowing when or if it will work!
I hope this answers your questions, let me know if I can explain anything more.

@MotherOfShihTzus It's a charity called SEEN https://www.seen.charity/ . So wonderful and has given me my life back tbh, I don't think I realised how close to the edge I was at times.

Sending you all much love 💗

Thanks so much everyone, @Amy00 @Deerdancer34 @KtAgs @Sophi81 and any other I’ve missed! Fingers crossed for your scan @Deerdancer34 and I’m sorry, it sounds like you’ve really been through it to get to this point- I really feel for you. Very pleased to hear things are progressing well. I feel like if I ever get pregnant, I’ll be in a state of constant panic too!

can I ask how many of you did the uterine biopsy? My Dr is keen for me to do it, to add another data point to my high blood NK cells (uterine NK cells) but to be honest, I don’t really see the point- why do a test which we can’t repeat? Im not going to redo the biopsy in a few months to see if the treatment is working…. So what’s the point? I also don’t want to wait another month for the test + results before starting treatment…

what have others done?

@Deerdancer34 awww many congratulations😃. unfortunately the fear of the next scan never goes away. Well it didn't for me anyway until the baby arrived! It becomes an obsession as I was only satisfied for a few days after a scan but then waiting for the next one gave me anxiety and low mood! It felt like forever waiting for a scan date!!! That meant I hardly ever enjoyed my pregnancies nor did I celebrate it which is a shame but they are here now so it's all good. I really wanted to try again in January for a third baby but the thought of going through all that stress and pressure again of regular visits to the clinic, medications, timed intercourse, the financials - so expensive, arranging childcare and then not even knowing if it will even happen again as I am 43 now, I thought it's best to leave it. Plus my husband didn't want that stress either 😬

@Sophi81 That was one of the things I had to work through, being denied that sense of pure joy that other women experience at a bfp, you feel a bit robbed of that privilege. But then I like to think we will appreciate our children so much more because of the journeys we have had to go on, so many people complain about their children and it drives me mad!

@MotherOfShihTzus @NessyT91 @fleur89 @KMG7385 @KtAgs @Sophi81 @Lily1990
I feel like I don't want to jinx it but I also want to be prepared for what usually happens at CRP. Could I ask your advice on the upcoming scans at Dr S's? Assuming my Week 8 scan is successful next week, I see on the plan for Week 10 and 12 there are Harmony bloods and nuchal scans. Did you do all these and how are they pitched, do they strongly suggest you do them? As my miscarriages were early, I don't feel too worried at this stage about chromosomal issues, so I am tempted to just go with the NHS on that. I just wondered what you did? Do they give you the option not to do those at CRP or do they make you? Also did you do all scans through CRP up to 20 weeks? I had said I didn't need one at Week 6 and Week 8 because EPU are doing one but they said I have to come in to monitor my meds... Thank you 💞

Hi @Deerdancer34 so back in 2021, I took all the scans at dr S because of my anxiety and honestly - they really helped. The quality of what you see compared to NHS, was stark! The nuchal scan with the specialist I understand is optional, but, if you don't take the more detailed nuchal scan, then I think you do still have to take a regular scan. I loved the nuchal scan; they spent so long going through every detail. You get pictures and recordings of all scans on a usb to keep forever. It was tough - travelling a 6-8hr round trip, every 2 weeks though - don't know if you're closer to the clinic? I thought if I get pregnant again, I might say I can only scan every 4 weeks when I have the intralipids. But my understanding is, the regular scans mean they can identify if something is wrong early and amend treatment in some way. I completely understand - it's so much commitment and high cost, but I just wanted to ensure I was doing everything I could - but I reckon that's what they are relying on!

Like @MotherOfShihTzus I also took all the scans in 2021 because of anxiety. The NHS are so harsh in comparison and the quality is crap.

I wanted to find out the gender so harmony was a no brainer for me. Less worried about the nuchal scan then. You have to do all the scans every 2 weeks ith the CRP until a certain point. In addition to this, the CRP will try and upsell (IMO) but I also liked all the extra reassurance. And they treat me how i wanted to be treated e.g. nicely and that my pregnancy was precious. So I also got everything I could this time - money dependent. I also had a 2nd trim loss so wanted the anatomy scan with the professor as didnt want to have any surprises at the NHS anatomy scan. Its still the best scan I've ever had. Worth the money.

Hope that helps @Deerdancer34

Xxx

Hi @Deerdancer34
For my daughter back in 2021 I went for all the scans. I found it really helped my anxiety until I could feel consistent movement. My impression from CRP is that it’s an “all in” sort of approach, as in they expect you to follow their plan and scan schedule to the letter. I did feel at times like they were trying to get the maximum amount of money as possible out of us… however their treatment is the reason I have my little girl so I can’t complain!

This time around I had a scan with my clinic here in Ireland at 6-7 weeks, then had my GP refer me to the EPU at our local hospital for a scan at 9 weeks for reassurance. I felt a lot more confident in the pregnancy this time around, and my losses have all been early (around the 6 week mark) so once I got the first scan over I felt I could relax a lot more.

If you would rather go with the NHS for the scans I don’t see in there being any harm at least asking CRP and seeing what they come back to you with? The harmony test wasn’t suggested to me back in 2021 so I never did that.

Hi there, it’s so lovely to see so many positive stories :) thanks for sharing.

This might be a long shot but I was wondering whether anyone had Humira with a latent TB diagnosis? I’ve been given a plan of taking antibiotics for 3 months to treat the TB alongside the Humira. I’m worried about the side effects of both, especially with the risk that Humira may raise the TNF alpha levels, contrary to what we/I want?

Would be great to hear experiences from those who had Humira. Many thanks xx

Hi @Deerdancer34 I'm not going to be of much help I am afraid as I have been incredibly fortunate and been able to see him through his NHS clinic so it's a bit different. The NHS clinic offered me two early scan but as they are so far away my local EPU agreed to monitor me instead. I've had my 12 week scan and am slowly weaning off my meds and have a maternal medicine appointment with him around 17 weeks x

It is wonderful to see all these success stories! I'm 14 weeks tomorrow (I hope) which is the furthest I've ever got after 5 losses. Still feeling very anxious but the stories give me hope!

@Deerdancer34 I echo what the others have said about the scans, they are really great at CRP, despite the expense. They are so supportive and the scans are more detailed and a much more positive experience than with the NHS. Dr Edge and Shehata both have a great bedside manner during the scans and they make the effort to show you the baby in detail and give you a memory stick with the photos etc. I didn't find them too pushy about the harmony test and nuchal scan, Dr Edge explained that it's recommended to have at least one of these (and the nuchal scan is cheaper). BUT if you have an NHS Fetal Medicine Centre for your 12 week scan (which I did as at King's) they will do the detailed nuchal scan there, and give the harmony test if there's any abnormalities detected in the scan. So I didn't get the harmony test or the nuchal scan at CRP, and Dr Edge and Shehata were fine with it. I think it's quite rare to have a detailed nuchal scan on the NHS though.

My last scan with CRP was at 11 weeks (as I'm doing odd weeks due to intralipid timing) and my next will be 15 weeks and then 20 I think (assuming I get that far!). Good luck to you :)

Hi guys I’d love to join if that’s ok, I’ve been reading through all the old press threads and still going. I’ve just had our results from Mr Shehatas clinic all has come back ok apart from having natural killer cells and ive been put on the complex plan. Ill be 41 in July and had a blighted ovum in December 2022 then a 15 week loss in June 2023 been trying ever since and just can not get pregnant again. We go tomorrow to get the baby’s autopsy result can you believe they’ve made us wait 8 months the only thing g they would tell us in advance was there was nothing genetically wrong. I’m waiting to go for a hysteroscopy I’d rather just pay private ans went for private consult but she insisted her nhs machine was better so waiting to hear. I’m in NE England so no idea how I’m going to get down for the lipids every month 🤦‍♀️🤦‍♀️🤦‍♀️. I’m so sorry you are here but it’s been such a comfort to be with people who know what it’s like xxx

@Gizmo1983 im so sorry to hear you went through that, you poor thing. What is the complex plan?

I’m also jumping back on this thread to ask if anyone has done EMMA/ALICE and found it useful?

@Newbeginnings22023 sorry to hear about latent TB- did they diagnose it because of the HUmira? I also didn’t know Humira can raise TNf!! Do you know how often than happens?

@Deerdancer34 I really wish I could say something to make you feel otherwise but unfortunately you will feel this right till the end. But the positive is once you have your beautiful children you won't even think back to this as you will just cherish every moment with them. I was exactly like that too, never excited about my bfp but i did used to feel really down and low about everyone else enjoying and celebrating their pregnancies. I actually never even told anyone I was pregnant including my mum until the baby was born!! Everyone was in shock as no one was expecting that. But to be honest once the baby is here that's not even going to bother you until you decide to try for another baby😬. Plus, life after a baby is defo hard too! No one prepares you for the before or afters! Both are a shock to the system emotionally, physically and mentally 😬. I would love to have one more but I don't want to go through this again. And that is also a shame that we have to make a decision like this even though I'm not happy about it 😩. I have my fingers crossed for you and will be thinking of you. Sending you lots of luck xx

As for scans - as the others have said due to anxiety I took all the tests offered too! The nuchal test is good as they spend an hour or so going through so much detail on the scan. The harmony test was done on me 3 times in my first pregnancy bcos it kept coming back inconclusive so in the end they just refunded the money back to me. I was sceptical doing it again in my second pregnancy for this reason but it worked this time which was a surprise. Neither are compulsory to take with dr s as you will get offered the nuchal scan with NHS but it's not as thorough but it's free 😬. Dr s will offer it but I didn't feel forced into doing it, I just did it to rest my mind!

@MotherOfShihTzus wow you travelled 6-8 hours??? Where were you coming from if you don't mind me asking? That must have been really hard and tough for you!!! I was travelling about an hour maybe an hour and a half if there was traffic and I thought that was bad!! Especially when you have intralips you end up being there for hours by the time I got home it was like 5 or 6 hrs in total which was tiring enough so you must be shattered 😬

Wow there are so many of you who had babies in 2021 - same as me 😬 @MotherOfShihTzus @KtAgs @NessyT91

@Lily1990 I agree both prof shehata and dr edge were really nice at my appointments and made me feel at ease! Nor did I feel rushed at any of my appointments! Congratulations to you too and good luck with your next scan xx

@Pupsandturtles thank u so much for your kind words. The complex plan is hydroxychlorine prednisone intralipids omeprazole and cyclogest. I’m a bit worried as like a lot of ladies I’ve read on here used to fall pregnant really easily and now it’s been 8 months and jut nothing I’ve had 4 rounds letrozole and definitely ovulate but I know the tests are going to be negative and they always are. I’m dreading travelling down for Intralipids am going to look at flights today as that may be the quickest way for me 🤦‍♀️

Thanks for the info @Gizmo1983. has the Dr explained why the treatment seems to be impacting your ability to get pregnant?

and can anyone tell me how long it took to get their immunes under control with treatment? I’m guessing you have to retest them every so often? I really have no idea if it a 2 week process or 6 months…….

Hi @Pupsandturtles yes I found out I have latent TB because I did the TB Gold test with Dr S and it was positive. I then went for a chest x ray which was clear so the TB doctor diagnosed me with latent TB, and advised that I need to get treatment alongside the Humira, which has serious side effects 🤦🏻‍♀️

As for Humira raising TNF alpha levels, if you go to fertility friends it’s got of stories from those who have had their levels raised after Humira. It’s something I’m planning to discuss with Dr S because I’m not willing to go through these risks only for my levels to be raised! X

@KMG7385 @KtAgs @Lily1990 @Sophi81 @NessyT91 @MotherOfShihTzus Thank you so much for your replies, it's really helped! Will have a think...I can see myself doing the Nuchal scan (sounds lovely!) and not Harmony but that might change. Anyway, one day at a time, got to get there first! Thank you again 🙏🤞💗

@Pupsandturtles i may be wrong but I believe some think that a certain amount of inflammation needs to be present in the uterus to allow implantation and it’s thought the combo of drugs may mean that is not present. Also I’ve heard that progesterone (cyclogest) makes the uterus more selective at implantation again I may be wrong there will be others who know more.
we had the autopsy results back and they came back as healthy and they could find no reason for what happened all her parts measured 14 weeks. This does fit in with mr Ss theory of the Nk cells affecting the placenta 😢

@Gizmo1983 oh I am so sorry. That must have been absolutely devastating.

@Pupsandturtles thank you so much yes it was rubbish it was 8 months ago now so not quite as painful as it was then but still awful and I just can’t get pregnant again which makes things so much worse. I’m hoping so much Mr S’s treatment can help me xxx

@Pupsandturtles sorry I forgot to answer your questions I think since you stop the meds at 10dpo ( or the meds I’m on) then it goes in a cycle by cycle basis but that is a really good question xxx