Immune/NK cells pred thread #31

Thanks @Newbeginnings22023 I hope your period has arrived. My cycles have always been messed up after miscarriages. It all goes up the creak.

@VenusStarr sorry to hear you are feeling flat. IVF is such a rollercoaster of ups and downs. I hope the lining improves. When is the next scan?

it looks like we will be starting in March. They talked to me today about dual stims (back to back) and I’m a bit apprehensive. Part of me thinks just get it all done in one go and freeze anything we get and then deflate and rest my body for a month or few months before doing a transfer. But I also wonder if it might be a bit much doing back to back.

How is your cycle going @VenusStarr, where are you at? X

@Newbeginnings22023 I’m just waiting for ovulation to be confirmed then I’ll start on the 10mg of Pred and Cyclogest. I’ll let you know how it goes. Has AF finally arrived for you?

I hope the festive break was pleasant and comforting for everyone x

@Lily1990 keeping everything crossed for you, it’s so hard to just forget about it and try to enjoy it after all we’ve been through. But staying positive is key xx

@VenusStarr hope you’re doing ok and are getting more used to the routine xx

@clhiu I don’t have the most experience with these protocols I’m afraid, I’ve only just tried the immune protocol once and I’m thinking of doing what you’re suggesting (from 2dpo onwards) for a few natural cycles in the future.

@Ems123456789 best of luck with your results. ARGC are very good from what I’ve heard.

I’m just waiting for my period to arrive so I can book my baseline scan ahead of my next FET. It’s late, which is always the way isn’t it?? When you want it to arrive it messes with you. And it’s not a pregnancy, my cycle is just messed up after my miscarriage. I just need it to get here so I can plan next steps.

Hope everyone had a peaceful Christmas xxx

Hi everyone, I feel like I’ve been totally off the radar on here. It will take me a little while to catch up. I hope everyone is doing okay. Glad you’ve started your next cycle @VenusStarr
@RumandSpinach i did intralipids and pred from the lister but my transfer was at another clinic. Unfortunately didn’t work out for me but that may not be due to the immunes and could have been a genetically abnormal embryo because it wasn’t tested. Who knows. The only painful thing I found with the intralipids there is it would take about 6 hours.

I had all my results back from the recurrent miscarriage clinic. All were normal. We are currently going through a monitoring cycle and Karotyping testing at the ARGC. They seem very thorough so far. We should get all our results back by end of Jan and then hopefully can progress to a 4th attempt at IVF.

hope everyone else is doing well. I know how triggering Christmas can be. Sending everyone positive vibes for 2024 and I will catch up on the thread.

@Lily1990 thank you so much for the reply and advice 🙏🙏🙏 and by the way it looks like I cross-posted earlier hence why I didn’t acknowledge this in my previous message x

I reckon my plan is to call the NHS RMC secretary next week when things fully reopen and get clarity on whether I can still get the necessary prescriptions even if it’s been over a year since my consultation. I will also explain the results of the tests I had done privately since seeing him and if he’d be willing to prescribe the CRP protocol off the back of those.
I will also put the feelers out here on MN to figure out if there’s another clinic in London/Southeast that may do Intralipids like the place in Sutton. They’re so much che cheaper there and easy to book it would be worth going all the way up there, but the distance! I’d have to put aside a full day each time, plus it’s a long stressful drive from here. Do you know if they do them Saturdays per chance?

Thanks x

Exciting times @VenusStarr 🤩 I really hope this one works out for you and every step from the baseline scan shows promising results. Keep us posted, i feel personally invested with all of your journeys honestly.
And thank you for your kind words ❤️

I have 100 pessaries of Cyclogest left from a bulk 12 weeks prescription my NHS RMC wrote me when I saw him and some leftovers from previous pregnancy and private clinic prescriptions I built up over time. If I take that twice a day from 1dpo I have at least enough for 5 more unsuccessful cycles. In case of BFP, I was told I can just ring EPU and they can prescribe me more without going through GP or consultant as a registered RMC patient. Not too worried about that unless I’m still not pregnant in 5 cycles from now…

With the Pred is a little more complicated, I have 48 5mg tablets left from CRP cycles. Their prescription is 25mg from OD for 10
days, but I’m not sure I’d want to do that anyway as it made me feel really unwell and messing with my cycle, plus I was not getting pregnant any of the months I used it. I’d barely have enough for one cycle if I went with that plan.
The official NHS line is they don’t believe in immune issues so they don’t normally recommend or prescribed it and definitely do not offer NKC testing, however some individual consultant like mine luckily do prescribe it, albeit based on empirical evidence and not testing individual patients. My prescription from him is for just 10mg from a PPT, because the treatment isn’t offered on the NHS, he couldn’t write me a blanket prescription beforehand like with the Cyclogest and told me to just contact his secretary in case of PPT for him to issue a private prescription then. I’m just worried that I need some starting from the luteal phase, but also since my consultation was over a year ago, he might not be able to prescribe them anymore.
I’m thinking of going for something in between, maybe 10mg from the day my app confirms ovulation - that’s usually 2-3 dpo. That way I’d have enough for 3-4 unsuccessful cycles max and only up to potential PPT.
Would love to hear what some of you would do in this case.

I also have 12 weeks worth of 5000iu enoxaparin injections, prescribed both by NHS consultants and IVF clinic (both for FET and natural conception), but not by the CRP protocol for natural cycles (they say to take only in case of IVF as there’s no evidence it makes a difference for natural pregnancies). Not sure whether to take those or not, I may still, but only in case of PPT.

My main pickle however is with Intralipids, basted on 2 separate lots of test results, they were prescribed to me both by my IVF clinic and CRP so I think I really do need them. My ivf clinic won’t offer them in a natural cycle so my only option would be returning to CRP upon PPT, but that would mean costly and time consuming trips to Epsom, buying into the whole package I can’t afford and quite possibly having to wait and pay for a follow up consultation first as I haven’t seen them since September.
I wish there were somewhere either local to me or in London that did Intralipids ad hoc like the place in Sutton Coldfield where I believe you literally just phone up and book. In fact does anybody know of any other place like that anywhere else? That would be a huge help to me.

I hope you all had a good Christmas and managed to switch off from all the TTC stress. I did after all, despite all the negativity that hit me a week ago x

Thanks so much for the support and gentle congratulations @VenusStarr @clhiu @Newbeginnings22023 ❤️. It’s been a rollercoaster already as my tests didn’t progress from 12 to 14DPO and I got very upset thinking it was ending already. But since then it’s progressed again and seems more promising. But trying to take things day by day and not feel invested. I can’t believe with my first pregnancy I took 2 tests and then assumed I’d be having a baby in 9 months time - was so blissfully naive!

@clhiu sorry for my delayed reply, I didn’t have a notification about your message weirdly. I could only find the Cherish clinic in Sutton Coldfield that offered intralipids outside of London / South England. They didn’t ask to see any treatment plan or prescription from CRP, it was super easy! I think other clinics may ask for a prescription though. It was £200 at Cherish and took 15-20 minutes for exactly the same amount as CRP, was so weird.

I’m so sorry you’re feeling rough, I completely understand how hard it is. I’d say that your repeated losses are unlikely to all be due to chromosomal issues, particularly as your CRP tests showed elevated NK cells (right?). And you seem to conceive quite easily, which I don’t think would be the case if you had minimal eggs or bad egg quality. I think if you could get the same dose of pred and Cyclogest prescribed by your GP or NHS doctor, and potentially access cheaper intralipids at another clinic, you’d have a very good chance. So basically follow Dr S’s protocol without having to spend all the money at CRP. Perhaps it’s worth booking an appointment with a sympathetic GP (maybe a younger female if possible) and emphasising how awful this has been for you and pushing for all this? I told my GP how the NHS had been useless with my miscarriages and he was happy to prescribe me everything from CRP’s protocol as I think he felt bad.

@VenusStarr that’s exciting (but I appreciate also nerve wracking) that your IVF cycle has started! How are you finding it so far? Hope the injections are ok.

@Newbeginnings22023 how are you doing? I hope you had a lovely relaxing Christmas and are enjoying these chilled in between days.

@RumandSpinach id heard steroids are generally more effective than intralipids at reducing NK cell levels but for sure steroids have worse side effects. Would you consider both or does he believe it’s not necessary?

love to all xx

@VenusStarr does the moonface go away? It feels ridiculous to be thinking about my looks after so many losses but there you go. I remember after my last miscarriage I was 4kg up and that added a layer of shit to the whole traumatic experience.

My NK count is 225 million and my cd69 activation marker is well within normal not that I understand any of that

@Lily1990 that’s great news although I absolutely get the need to feel cautious at this stage with our kind of history, but I really hope this is the one for you ❤️. And congratulations on your job success too 🙌. To think you thought you could have been in for an unsuccessful application and BFN at the same time and the opposite happened, you must feel so great about it all 😍
I’m really intrigued about you being able to get intralipids last minute elsewhere. May I ask you if one can literally just find a clinic that does them, call them and have them without a consultation or tests? Or did you have to show the plan recommended by CRP and they were happy to administer? Would love to know if this is an option for me as if I do fall pregnant again, I would want to get intralipids, but I don’t want to pay for the full package with CRP and go through the motion of having to have a new consultation etc…My ivf clinic who prescribed them for an FET, would not do them in a natural cycle.

@VenusStarr and @Lily1990 I must say I’m struggling quite a bit today. I was feeling quite relaxed and optimistic about trying this month and I didn’t even get too upset that we missed the chance to try last month, then last night I read a post on the infertility board that broke me. It was from a 46yo woman who became pregnant for the first time at 42 and had 3 consecutive losses then wasn’t able to conceive at all for 4 years and just tried IVF just to be told at her baseline scan that she has no follicles at all and that at her age is virtually impossible to get pregnant. Of course I knew this already and I already know at my age is also virtually impossible to have a healthy baby, but something about reading it in that post in that moment really touched a nerve. I realised I’ll be 44 in less than 2 months and 3 pregnancies at 41 and 2 at 42 didn’t work so why would one work at 43-44, who am I trying to kid. And all these success stories are from people who seem to be able to keep investing money in ivf or expensive fertility treatment which I do not have. My ivf clinic and CRP won’t offer me any kind of support unless I go for the whole package and I don’t even know if I can still get help from my NHS consultant as my last consultation was over a year ago 😞. I feel really alone and hopeless today, really sorry if this isn’t what people want to read on Xmas eve, I wish I wasn’t feeling like this but here you go.

My personal feeings and issues aside, I wish you all a lovely Xmas break xxx

Hi @Lily1990 whispering congratulations on your BFP! Please stick little one ❤️
I know what you mean about having more hope with a different protocol. I know it’s easy to assume each pregnancy will fail but we have to stay positive. Many women had their happy ending so our time will come too ❤️

Thanks so much for your FB group suggestion, will have a look. I’ve been looking at medical journals as well, all looks promising especially for women with endometriosis, a condition I’ve got.

Hope you have a relaxing break too xx

Hi @RumandSpinach I’ve never had intralipids only before, it’s been part of a wider protocol. I like pred though because for the first time ever, despite it being another loss, I didn’t have the usual chills and flu like symptoms I get after an embryo transfer (which psychologically made me feel like my body is reacting badly/rejecting the embryo), so for me that’s been a real positive. All the best to you x

Hope everyone has a relaxing, peaceful holiday xx

Hi everyone, happy Christmas Eve, I hope you can all switch off from ttc and enjoy the next few days.. easier said than done!!

I have a question for you if its ok? I've been seen by Dr Thum at the Lister after 6 miscarriages and he found I have elevated cytokines and cytotoxicity. He's said for me 25mg pred OR intralipids in pregnancy and that these would be equally effective.

I was leaning towards pred but the side effects look a bit brutal for what would be hopefully 12 weeks. Would anyone know what an intralipids only protocol looks like? Has anyone tried it?

Thanks so much for the job congrats @Newbeginnings22023 and @VenusStarr 😊

In a surprising turn of events I’ve ended up testing positive. I had to get emergency intralipids at Sutton Coldfield because we were staying with family up north and due to go on holiday the following day! (It was only £200 and took 20 mins, so much better than CRP!) My tests are developing much better than with my last chemical, where it was super faint at 11DPO but it’s quite clear now at 11DPO. But I’ve still been here 5 times before with no baby to show for it so feel I can’t let myself be positive. 4 of my losses have been around 20-23 DPO so the next 10-14 days will be crucial I think.

We are on holiday for the next couple of weeks and our last loss happened on holiday too, so feeling afraid another holiday will be consumed by loss! But also very grateful to have tested positive right now and reminding myself I’m on a new protocol with more immunosuppression than last time.

Hope everyone is doing well. @VenusStarr i feel exactly the same with my brain flitting between it could work out to quickly reminding myself it probably won’t. It’s a self protection mechanism but I agree it’s exhausting. I hope you have some relaxing days off and can treat and look after yourself, you really deserve it.

@Newbeginnings22023 I’ve heard of people having success with GCSF too, I think it might be more regularly used in the US too for reproductive immunology? There is a ‘reproductive immunology’ Facebook group you could join and search for posts by people using it perhaps. I find a change in protocol can be helpful psychologically (to feel you’re doing something different next time) but then it also can be scary adding another medication when we’re on so many already. It’s good you’ve got until January to mull it over and see how you feel. Hope you have a lovely relaxing break.

@clhiu hope you are doing well too, and same for everyone else. Really hope 2024 will be our year 🙏❤️

How funny @VenusStarr I’ve been thinking about switching to Clexane as well. I agree that it causes a lot of bruising but I always ice the area before and after injecting to minimise this!
I also wasted money last time on intralipids when I should’ve waited for the repeat HCG blood result. All good lessons!

That’s interesting about the oversuppression. It’s really hard to know without trying and seeing what works.

It’s good to stay positive, it’ll be a new year so let’s hope for good outcomes 🙏🏼

Enjoy your afternoon at the hairdresser’s and your time off over Xmas and the new year. I’m off until 4 January which will be good for me too.

Hope everyone has a relaxing time off over Christmas and New Year. Here’s to a better year! Xxx

Thanks so much @VenusStarr for your helpful responses, as always ❤️ I have consented to the use of GCSF now and will see what happens. Doesn’t necessarily mean I’ll try it though, I’ll see how I feel come January!

The FET sheet they sent me was very confusing but they have now explained that those meds (pred etc) need to be taken 5 days before transfer. And yes intralipids within a week of the transfer date. So thank you for pointing that out as I felt like I was going mad, stared at the sheet for ages!

I take fragmin too because I have APS. So much medication!

Really hope it works out for us in the new year. How are you feeling? Xx

Hi @Lily1990 yes I’m on hydroxy as well as pred, don’t love it or hate it tbh. Not enjoying the slight hair loss happening! Dr S is happy for me to forego the humira for now but has suggested we add GCSF injections to my protocol.

So I have two questions:

A) has anyone tried GCSF? Any notable side effects? Has it helped anyone? He’s saying it’s my decision whether we add it or not in my next attempt.

B) for FETs do you start pred, intralipids etc before transfer, at the time of transfer, or at a positive pregnancy test? Very confused about this because my protocol says at positive preg test although my fresh transfer said a few days before transfer. Have asked the nurses too but hoping to hear from others here.

Congratulations on getting the job @Lily1990! Excellent news before Xmas :) as for the NHS recurrent miscarriage clinic, as you say at least you’ll be in their system which means you have that extra support if you need it. They’ll offer you additional scans etc.

@Ifyouknowyouknowyouknow I can’t really answer your question on reducing TNF alpha levels but I did ask Dr S this question and he said it fluctuates every couple of months. 37 is high as per the range he provides, the limit is 31. Hope this helps xx

@Ifyouknowyouknowyouknow I think they said it had to a minimum of 2 weeks so should be fine with 2.5/3 weeks. Hope the first dose works for you getting it down.

Hi all. I can’t remember if I’ve posted on this thread recently, but I’m back with Mr S to attempt baby 3, having had 2 on his protocol (pred).

Interestingly he repeated all the blood tests and my NK cells were normal but TNF alpha was high, so I’ve got my second humira jab today. And then he’s recommended sticking to the pred protocol when we try despite the NK results, which I’m fine with as after 4mcs I don’t want to leave it to chance in case my levels fluctuate again.

I just wanted to check for anyone who’s had the humira phase - I was told to get the repeat bloods done 2 weeks afterwards…I’m assuming it doesn’t matter if it’s 2.5-3 weeks? Just not sure when I can fit it in! Would ideally get it done next week but I guess 8 days wouldn’t be a long enough gap?

Also, did anyone try other methods to reduce TNF alpha? I’ve been taking turmeric supplements as I read that can help. My level was 37 - not sure if that’s massively high or not.

Best of luck to everyone - it’s not an easy time of year.

Hi @clhiu I completely agree, I’ve also imagined sharing news with family like a Xmas present or having a baby at this time. In fact I just realised with a loss I had in April, the due date was a couple of days ago (although I never really thought I would get there at the time). I’m really sorry about your chemical pregnancy before Christmas 2 years ago, that must have been so so hard.

Although frustrating you missed your fertile window, it must have been nice to miss Cyclogest and Pred this month! I’m starting to hate Cyclogest too – it gives me cysts on my chin and I hate putting them up there! Hmm maybe put the tv on / some music when your brother in law and gf stay at the start of your next fertile window, but if they hear you, so be it!

@Newbeginnings22023 so pleased your TNF alpha levels had dropped to high normal, that is brilliant and also shows it was a great decision to repeat before going straight to Humira. Hope your follow up goes well tomorrow, let us know how it goes. I’ve also had 4 chemicals and he said the same to me about it being unlikely to be chromosomal – are you on hydroxy as well as Pred?

@VenusStarr I’m glad you’re feeling ok about this Christmas, but understand starting IVF is very anxiety provoking and overwhelming. Hopefully as @Newbeginnings22023 says once you start and adapt to the routine, it gets easier. Hopefully the acupuncture will help with relaxation too, as well as having some time off over Christmas. I will also likely be in this position in Feb so hopefully you can share your advice with me then!

I did actually get the job I applied for 😊 so I’m very happy about that, and feeling like it’s not the end of the world if I get a BFN in a couple of days. I also had my first ever NHS recurrent miscarriage appt with St Mary’s, although all the tests they said they’d run on me are things I’ve already had (thyroid, lupus, thromobophilia screen, vitamin D) so can’t imagine it will be helpful. But I thought it would be good for me to get in the system anyway.

Hope everyone else is doing well xx