Immune/NK cells pred thread #32

[VenusStarr]

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed.

@Gizmo1983
@fleur89
@Sunflower360
@MotherOfShihTzus
@lozzmax
@HopefulH
@kea1990
@Sprinkleofbabydust
@Newbeginnings22023
@star2022
@RumandSpinach
@Ems123456789
@MamaW05

Love to all ❤️

Thank you. Yes, you are right. I will likely give it one more shot and then see if I can get a loan to pay for immune testing.

Hi ladies, thank you all for your kind messages. I’m sorry for all your losses too.

@lozzmax I’m so pleased to hear your scan went well and hope all continues to go well. I get really worked up before scans too, it’s only natural when we’ve had bad experiences in the past. Thanks for mentioning the cervical weakness however it was a MMC for me this time, there was no heart beat at my 16 week scan. Based on measurements they think it happened not soon before which would align with coming off the prednisolone 😔 I’m finding the thought of the regular testing overwhelming too but it appears to be our own choice now. I’m also just so petrified of having another late (or even later) loss, I also had quite a traumatic experience giving birth to her (on Mother’s Day, would you believe it) so I think that’s holding me back. My initial consultations have been with Dr Shehata then Miss Edge takes over, she is lovely.

@HopefulH Great news from your scan but sorry to hear you have morning sickness. Do you mind if I ask what AIP foods are, were you recommended to stick to a specific diet whilst pregnant? I hope you are able to relax a little on holiday. May I ask why Dr Shehata was against Fragmin? I was already recommended it by my IVF consultant due to having the MTFR snp but he recommend it also. There was no genetic abnormality found and we have 4 genetically tested embryos left so it’s more a case of me being mentally ready to try this again!

@v60 I hope you get a positive result soon. If we opt to try again, it will be via IVF and I need to be on the Tacrolimus for a month before the transfer so I’m happy to share my experience with you. Has it been recommend that you still have testing but just less frequently?

@Carportforme Sorry for your losses and I hope you are able to find some answers. I didn’t have any signs of immune issues either before I had testing (other than my losses) although like HopefulH I also have endometriosis and have suspected there may be a link.

@Jecca88 Well done on going to your SIL’s party. I’ve been there with my SIL too, it’s really hard especially with family. I have a friend who is due in 3 weeks time, exactly the same time I would have been with this recent loss, it’s really tough navigating being happy for some one and managing your own emotions/pain etc.

Hi again, I had also meant to ask whether anyone can recommend an online pharmacy for dealing with private prescriptions from Dr Shehata? I have always got my medication from the clinc but they don't stock tacrolimus so I will need to get it from elsewhere and I'm wondering whether I can save a bit on money on some of the other meds too. I also have Lubion injections (if I get pregnant) which are silly expensive!

Hey Guys, hope everyone is well. Just checking in to make sure everyone is enjoying the sunshine. @lozzmax and @HopefulH how are you guys doing?

Thanks @Bubbles202 its so hard when their due date is so close to what yours would have been. My First Miscarriage I had the exact same due date as my friend and she has just had her second and i just can't bare going to see her and her two babies, knowing that her oldest would be exact same age as ours. It really makes me feel like i have not progressed at all.

I am enjoying a well needed break whilst i wait for the genetic testing of my last MMC in June and off on holiday at the end of this week.

Love to all x

Hello!

@Jecca88 a break sounds lovely. As horrible as it always is, those couple of months waiting for the genetic testing is at least a bit of time off from it all.

All ok here, I had another scan last week, measuring 8+1 last Friday which was four days ahead of dates which was nice! Feeling pretty dreadful, really thought the steroids would help with the tiredness/nausea. However it is at least reassuring that things feel like they're progressing.

Hope everyone else is ok.

@Bubbles202 I don't know a way of getting the drugs prescribed. I did ask my GP but he said he couldn't prescribe the GCSF for me, he can do the prednisolone though.

amazing to hear @lozzmax - is your next one at 10 weeks? nausea and tiredness are always good signs - but sounds horrible. Yeh - i think i am having my 2nd period after the MMC and its so light - think i really need to get a Hysteroscopy - got an appointment with Dr S end of august to discuss.

Hey guys, I'm still on holiday - feeling more and more anxious as I'm on a count down now to our next scan when I'm back next Tuesday. I've been feeling tired, not sleeping well and a bit icky but definitely not the morning sickness I had with my son. So not feeling particularly reassured. Feeling really low to be honest. The anxiety is so exhausting and I feel like the stakes are so high now. I don't know if I mentioned that my little sister is pregnant with her third (by accident) and she's now 13/14 weeks and I just keep freaking out about how I'll cope with another loss and watching her have another.

@Bubbles202 the AIP protocol is very restrictive at first. You can eat meat and certain vegetables. No sauces and pretty much no sugar. I honestly think it's the reason I got pregnant again. I think it brought my systemic inflammation down enough for implantation to occur. I'd been on the diet for 10 weeks when I got pregnant this time. I'd definitely recommend it for anyone with endo as all my symptoms went and I felt so great! Until I got pregnant... I can't stomach anything I was eating before now and I've reverted to lots of biscuits and crisps 😱

Re the Fragmin - I believe previously Dr S did prescribe fragmin as part of his protocol but he did a research paper around it and his findings concluded it had no positive effect on women who did not have blood clotting disorders. I think he believes it is the immune response itself that can cause clotting issues so treat that rather than thin the blood. That's what I understood from our discussion anyway.

@lozzmax that's wonderful news that you've made it to 8+5 and all looks good. Are you starting to feel a bit more confident?

@Jecca88 hope you have a lovely holiday!

X

@Lozzmax good to hear things are progressing with you!

Holidays are strange things - on one hand, you’re away from every day life so you forget about things with all the distractions, but on the other you’ve got more time for your brain to go into overdrive. Hope @HopefulH and @Jecca88 you can switch off for a bit, this is such a long road.

My period is a few days late and I’ve had a super faint positive test this morning. I thought the hcg would be stronger at this stage - with previous pregnancies I’ve tested positive before my period with a very clear line, maybe this time I implanted later. Not sure if that makes a difference. I keep going to the loo expecting my period to start. Thought I was ready for the rollercoaster again but feeling very apprehensive about starting the drugs and the coming few weeks and months.

Hey all

@v60 how are you doing? Did your tests get stronger?

@HopefulH how are you feeling? If it makes you feel better, I definitely felt worse with my daughter - I'm putting it down to the amount of medication I'm on.

How's everyone else?

@VenusStarr have you seen a consultant yet?

@elarcoiris sending love x

@lozzmax Hello, Currently feeling very tired and a bit icky... can't stop eating really. I had a scan and more intralipids yesterday and saw a very lively baby moving about. Really couldn't believe it. Measuring bang on my dates now at 10 weeks 1 day, so feeling a smidge more confident here and there. I've finally registered with a midwife for my booking in appointment but not sure I'll get in for a screening scan in time now.

Do you get any cramping after cyclogest pessaries? I keep feeling a bit crampy and achey after the pessaries.

How are you doing? When's your next scan?

Hope everyone else is doing okay?
X

@lozzmax Thanks lovely!

Have been meaning to come back here and share a bit of an update, but life has got rather busy, especially with my son on summer holidays.

Not a huge amount to report from a TTC perspective - have had my first period post-miscarriage and CRP have been in touch to let me know that the results of genetic testing are in, but haven’t booked an appointment yet so don’t know what they are.

However, in other news, I have got a new job so currently working my 3 month notice period and putting TTC on hold for a bit until I’m settled into the new role. One of the things that hit me hardest about the miscarriage was the fact that because I’m not very happy in my current job, I’d been counting down to maternity leave and then the opportunity to find something else rather than going back at the end of next year.

Then a perfect job came up and I decided life is too short to stay in a role that is making me miserable for an undefined amount of time, so applied, got it, and here we are!

Will definitely be back to CRP and trying again in the new year, so will keep quietly lurking over here and rooting for all of you until I’m back properly then!

Sending lots of love to you all xxx

Hello @elarcoiris congratulations on the job! That's brilliant. Honestly something so similar happened to me. Because of a loss (and therefore not having a mat leave to consider)I managed to be able to take a new contract at a huge brand rather than staying where I was for less money but guaranteed mat leave, but not as good for my career and also not as interesting. I just decided to go for it even though we were TTC - we decided we'd make it work. And then classically I got pregnant the month I started at the new place. I firmly believe you can't put your life on hold during this process, I'm so pleased for you. Well done!

@HopefulH lovely news about the scan 🥰 My 10 week one is on Friday, so we're a few days apart in gestation. I had my booking in apt on Monday. I just ripped off the plaster and did it. I did find it hard to go through all the losses, especially when she said 'so is your 8th pregnancy', but she was lovely and it's good to get your urine and bloods done.

I don't take pessaries acrually, the CRP prescribe oral ones which is a total game changer! You're not on GCSF are you? That gives me very bad back cramps the next day.

@lozzmax thanks for asking but unfortunately no, the line never got stronger and then I had a mixture of positives and negatives so I went to the doctor for a blood test and that was negative. I was hesitating to commit fully to the drug protocol without that line getting stronger. My period is still MIA so my doctor suggested a few days on progesterone to try to bring it on. I’m usually super regular but life is pretty stressful these days so who knows, I just hate not knowing where I am in my cycle. And I hate the waiting. Again.

@elarcoiris congrats on the new job! Definitely can’t keep putting things on hold

Hi ladies, me back with another random question, sorry. Just wondering if any of you have ever been tested/told that you lack DAO (diamine oxidase) emzyne and thus you had too many histamines, possibly attacking embryos?

@Carportforme sorry I've never heard of that!

Hi everybody, I've posted on this thread before but under a different username. I massively sympathise with everybody - recurrent loss was the most painful thing I've had to go through. I had several early losses and was diagnosed with high NK and cytokines. I was very lucky that the treatment (intralipids and steroids and clexane) worked for me and I am now 23 weeks. However, I am absolutely terrified of how the rest of this pregnancy is going to go since my last intralipid was 8 weeks ago, and as far as I understand, that means it's now wearing off/ worn off. I stopped the steroids and clexane at 12.

I've asked my Dr about this but he's not massively helpful- immune treatment feels like such a confusing wild west, and no one seems to be able to explain to me why I don't need these treatments anymore. Can anyone on this thread share some wisdom? Did anybody stay on clexane through the whole pregnancy, and did anyone's clinic continue to test their NK cells? Mine won't do either and my anxiety is through the roof.

Umm, Thank you so much for responding. Something I’ve only come across recently. Something to do with histamine intolerance and the body releasing too many histamines (some of which are necessary in pregnancy) but you can have too many! Bit like NK cells I guess

@Carportforme I have read a lot of ladies on the Reproductive Immune Facebook group who follow an antihistamine protocol, which sounds like it involves taking a lot of antihistamines? Is this what you mean?

@Puppyyikes congratulations on your pregnancy. Who have you done your immune protocol with? I know with Dr S you wean off pred from 12 weeks. I'm not sure on the other meds. I'm under another consultant for a condition called CHI as a preventative measure and he will have me weaning off prednisolone from 17 weeks if my placenta and baby look okay - but I believe I'll be on the Fragmin, Aspirin and hydroxychloroquine till the end. I'm not sure on cyclogest.

Are you having scans to keep a check on growth and placental health? As far as I understand it, with a case of standard aggressive nk cells or high nk cells you can wean off the meds after 12 weeks as that's when the placenta has formed fully and the nk cells stop attacking it. That's as much as I understand.

If you're feeling really scared you could drive to Cherish clinic and get some intralipids? You can just book it online.

You could also talk to your Midwife and ask for more support and more monitoring due to anxiety? It's really scary being pregnant after so many losses so I think doing whatever you can to try to ease that anxiety. I'm currently going for weekly scans privately (I'm only 10 weeks so a long long way to go) and it feels nuts but I can't stop. I may slow it down if I make it to 12 weeks 🤞 but I imagine I'll be anxious for the whole pregnancy X

Hello HopefulH and yes, I think that will likely be it. I may have to take a look at that page but I M not a big Facebook fan.

Hey ladies,

its been a bit quiet on here recently.

thank you @GinMama400 for sharing your story, it always brings me a lot of hope hearing this and that’s it’s possible.

how is everyone?

a little update on me - I had a lovely holiday in Prague and really got to forget about this for a while. Came back to getting my genetic results from my 5th miscarriage in June - no abnormalities found…
I had an appointment with Dr Shahata yesterday to discuss next steps - I finally got the predisinole (thanks for all your advice - esp @lozzmax ) I also mentioned about my periods being very light and painful and he decided to do a scan- my first one with him. Within about 2 mins he determined I had Polycystic ovaries - and it was so clear to him. I have had about 100 pregnancy scans and then 6 routine scans on the nhs to check for abnormalities and never have I been shown or told this - so was a bit shocked - could have potentially explained why I have had two blighted ovum’s apparently. Got to go back tomorrow for blood tests to check if I have PCOS - the actual syndrome. Just can’t believe after 3 1/2 years - they are finding this.

anyone else have PCO but without the syndrome?

sending lots of love to everyone xx

Hi everyone. It's been a while. Just got back from a lovely, sunny holiday with dh. Really needed it. We had such a relaxing time. We did have a serious chat about next steps and he surprised me in that he thinks we should give our frostie a chance. I'm going to talk in through in therapy this week but I think we will be doing the final ivf cycle and I am ready to draw a line under it. I do genuinely feel ok with it not working out in a baby for us. It's taken so long to feel that but this feels right.

My dad is currently in hospital though, he may have prostate cancer - waiting for results, but he was admitted due to an irregular heartrate - I think they said atrial (sp?) fibrillation, his heart was 155 beats a minute. So that's a worry too.

@lozzmax thanks for asking about the lump, it was a massive cyst. It started hurting the night before the appointment but they were great and drained it straight away. I am worried it was the ivf drugs that caused it and the consultant said it was a risk.
Hope you're doing ok?

@Jecca88 I'm sorry to hear your recent loss was chromosomally healthy, that's the same for mine ❤️ hioe you're OK. Did Dr S put you on metformin? It amazes me (but then also doesn't) how the nhs can miss things like this.

I've missed loads, how is everyone? @HopefulH @Gizmo1983 @Newbeginnings22023 @Rainbowsunshine81
@elarcoiris ❤️💕

@VenusStarr Hope you both had a lovely holiday, I hope your dad is OK ❤️
We came back home from Cyprus on Sunday, had my third and final transfer with the remaining three embryos we had left. Thought just transfer them all with it being the last time. I'm really hoping we will be third time lucky. Xx

Keeping everything crossed for you @Rainbowsunshine81 ❤️💕 I hope you have managed to have a break and relax whilst you were in Cyprus xx

@VenusStarr Thank you ❤️ ❤️ quite a world wind two days in Cyprus, mostly spent chilled in the hotel room. Transfer was on the Saturday and came home the same day. I hope you're OK ❤️ xx