Immune/NK cells pred thread #31

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 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!

@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 💞

@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 😬

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?

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 💗

@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!!

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. :)

Thanks @KtAgs and @Sophi81 ! What is superovulation?

I’m in 2 minds as to whether to pursue natural cycles plus immunes or IVF plus immunes…. Part of me thinks let’s throw everything at this… on the other hand, I don’t want to go through the pain/ expense of IVF if it’s going to take a while to get my immunes to the right place.

@KtAgs awww many congratulations! I am so happy for you. Your story sounds very similar to mine except I didn't take the hydroxy as it made my hair fall out!! Also I'm much older 🙈. My son was also born May 2021 😃 on our first try of SO with Dr S.
We started trying for number 2 with dr s when my son was 8 months old on SO but it didn't work this time. It took us 10 months before I conceived naturally after taking a break from 8 failed SO cycles and I had my baby girl in July 2023. I was on more medication with this pregnancy than the previous pregnancy as I was also put on GCSX and metformin on top of the standard medications. Either way both methods worked with dr s. So my son was born 2 weeks before I turned 40 and my daughter was born a month after I turned 42 😬.
Prior to this I had 3 losses plus I lost a twin when I was pregnant with my son 😞

Hi @Pupsandturtles

Another story of successes here. Had 3 losses in 2019 prior to seeing Dr s - one at 20 weeks in, one at 12 and another at 10. Last two had chromosomal issues but first loss was unexplained. My NHS consultant suggested I see Dr S. We went privately. Then covid hit.

I didn't do well on pred anyway and I took hydroxy and did ovulation intralipids. My son was born may 2021. A very stressful pregnancy in many ways.

We started trying for no2 when my DS was 18 months. It took us 10 months to conceive and I was 37 nearly 38. The clinic wanted me to do superO but wasn't keen. I was also quite naughty and didn't do ovulation intralipids but had hydroxy and the rest of the meds. The expense killed us this time but I'm nearly 37 weeks with a little girl. This pregnancy has felt very different - probably as I have a toddler to take care of so more distracted. No idea if the immunes helped or the issue was 'fixed' but wasn't prepared to try without them.

Hope that helps. Xx

@Pupsandturtles I'm not sure to be honest. I've seen the same thing with people struggling to get pregnant. Could maybe be the progesterone or the pred from ovulation making the uterus more "fussy" about what it accepts - I've seen that rumour before. I also read you can start meds from BFP as other doctors recommend this. But Dr S is a firm believer in starting from ovulation as he thinks it doesn't work as well if you start later. I've seen people have success on here before when they have started meds from BFP but it's all anecdotal!

Thanks @Amy00. I’ve heard of a few people saying they stopped getting pregnant on the meds. Do you know what the issue was?

@Pupsandturtles I am a success story. I had 7 miscarriages and went on to have a healthy baby boy in November last year under Dr S. We did end up doing IVF though as I stopped getting pregnant on the meds. We also did PGT-A testing on the embryos to rule out chromosomal issues. I was on Humira, intralipids, 25mg pred, progesterone, fragmin. It was a heartbreaking journey that took 3.5 years but obviously all worth it now. Keep going ladies! ❤️

thank you @NessyT91, appreciate you taking the time to post an inspiration story!

@Deerdancer34 delighted to hear your lovely news. Sending you best wishes for the next few months!

@Pupsandturtles I haven’t been on here in a while but thought I’d share my own story in the hope that it might help you and others… I had 3 early MCs between December 2019 and November 2020. Went to Dr Shehata in December 2020 and was prescribed hydroxy while TTC and intralipids from BFP (as well as the usual aspirin, vitamins etc). I didn’t manage to fall pregnant for 4 months but that one stuck and we had a little girl in January 2022.

When she was a year old we started trying again under a different doctor as we don’t live in the UK and travel wasn’t going to be possible with a baby at home. My doctor suggested not using immune meds this time as my white blood cells were apparently normal. Anyway I conceived straight away but unfortunately that ended in a MC at 6 weeks. I then insisted that we follow the plan from my successful pregnancy and I am now 36 weeks pregnant with our second baby.

I hope this helps. Throughout my journey I have found this thread to be a fantastic resource. Sending you love and best wishes.

Also, if anyone has immune success stories to share, I’d love to hear them… I’m getting to that point of thinking ‘there’s no way this is ever going to work.’ Would love to hear from some people who can prove me wrong!

(context: this was my first month on Pred after 3 early losses, no BFP at all.)

Hi @Deerdancer34 I'm really happy for you- how lovely to hear that your journey is progressing so well! How are you doing now?

Can I ask what the motivation was for Humira? My Dr doesn't seem to want to prescribe it, but I'm seeing lots of women on here who use it. He only seems to be considering pred, IVIG, and intralipid. I'm also confused about whether it's better to downregulate immunes BEFORE TTC, and wait till they're in the correct range, or simply start the meds around ovulation. Which approach did you take? Finally, can I ask what motivated you to move to IVF after trying naturally with meds for 3 cycles? Was a 3 month try Dr S's recommendation?

Thank you, and congrats again.

Dear all, after my ectopic last summer, I joined a charity counselling programme and decided to take a break from the thread but I have found it so helpful learning about everyone's journeys that I thought I would share my journey/update. (Ps the counselling was incredible and has helped me feel more like myself than I have for the past 2 years. I really recommend speaking to someone who is impartial and the charity I went through had a 10 step programme to follow which gave it a really good structure).

Brief history: 3 early miscarriages at 5.5 weeks, came to Dr Shehata, 3 months of trying naturally with medications and then 3 Superovulation cycles, the 3rd one ending in an ectopic. So after 3 months out due to the Methotrexate, I started the Superovulation cycle again but on 4 tablets, which produced a good response the 1st time but 4 follicles the 2nd time which Dr E said she didn't want to trigger. It was quite heartbreaking because it feels a waste of a cycle & pennies...Also I thought Chriatmas spirit and having had a break might mean quick conception so it was all a bit disheartening, anyway we dropped back down to 3 tablets (Note: a higher dose isn't always best!).

On the 4th cycle since ectopic I conceived and due to my ectopic last year, I went to EPU today for a 6 week scan (so I could cancel CRP & not pay if it was bad news again...). I'm pleased to say there was a little baby in the correct place and a heartbeat, so the 1st hurdle has been achieved. After 3.5yrs I never thought I would reach this point but what has amazed me and kept me going is the strength and perseverance of all the women here and that there is hope.

I have had humira jabs and then been on 25mg of Prednisolone, 2x 400mg Progesterone, low dose aspirin, Intralipids, multivitamins, Vitamin D & COQ 10. I have managed to get the hospital to prescribe the Progesterone but not the steroids but at least it saves a little bit. Please do ask if any questions about my journey but what I have learnt is that SO is basically trial and error, I found it hard when I didn't get pregnant straight away on Dr S's plan. But the one thing Dr S gave me was a plan and hope whereas the NHS just told me to come back when I was pregnant which wasn't good enough for me. As I lost my babies so early, I felt I needed early support which Dr S gives you from ovulation.
I know it is early days but this is the furthest I have ever got, so a big milestone! I have been keeping track of all your journeys these past 6 months and sending you all love and strength 💗

@Pupsandturtles I'm on 2 x 400mg progesterone pessaries until 16 weeks and intralipids every 4 weeks (plus the progesterone). In addition I'm taking the standard high dose vitamin D, omegas and multivitamins.

My only issue is elevated nk cells and I have hyper fertility so I'm probably on the most basic immune plan. Prior to conception I took very high dose coenzyme 10 for 3 months prior to trying to boost egg quality. This was per Dr Shehata's recommendation too.

@fleur89 asking because I see lots of people on these threads on a whole host of meds- Humira, IVIG, intralipid, etc

Thanks @fleur89 are you on anything else?

Hope your scan went well @Lily1990 - thinking of you 💗

@Pupsandturtles I'm on 20mg but start tapering off by 5mg every 5 days from next Tuesday if my 12 week scan goes well

Can I ask what Pred dosage most people are on?

mine is low (10mg) and with my new test results of high cytokines, I’m feeling as though I should increase it. However, of course I can’t get in touch with my specialist… no appointments with him for 2 weeks… why is it always like this!

@MotherOfShihTzus thank you so much for your message- positive experiences are very much appreciated at the moment!

@Lily1990 yes I am pleased I'll be on the Hydroxychloroquine and cyclogest longer. I won't miss the pred I've definitely gained weight and feel very bloated and puffy and I was on the larger side already. I've also had horrendous nausea so it's not even masked the pregnancy symptoms like I've read it has with others!

I hope your scan tomorrow goes well. Ours was last Thursday and I was in tears before I even got in the room!