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!

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

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

@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

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 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

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

Hi @clhiu thank you for checking in. I'm struggling a bit, seem to be feeling the effects more than I did before. The last 3 days I've felt quite fuzzy headed / hungover. I'm cd8 today, so day 7 of stims. Had 2 scans so far. I'm not sure I feel that hopeful. One follicle is steaming ahead and is 15mm, the others are 12mm - 7mm and some tiny 5/6mm. Feeling a bit deflated. One follicle has stayed exactly the same size since tuesday and its mainly my right ovary doing all the work. I'm back on Saturday for another scan.

Got my fingers crossed for you for this cycle 🙏

Hope you're getting on OK @Newbeginnings22023 have you started yet?

How's things @Lily1990 are you booked in for a scan, or are you still away? Hope you're feeling OK 🩷

Just reading back, @Ems123456789 6 hours for intralipids?! Wow. Crp takes just over an hour. Hope all is going well with the monitoring cycle.

Feeling a bit flat today, my tummy is already bruised and feeling like we might not even get a day 5 blast after all this. I'm glad my Dr wants to have a break between cycles, I don't think I could do back to back. I initially felt good about my lining as it was 5.8mm on cd6 / day 5 stims but today it wasn't much over 6mm. So not even sure we'd get to do a fresh transfer at the end. I'm very tired but my head is whirring 😪 x

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.

@VenusStarr I’m sorry to hear you’re feeling rubbish from the meds and not very hopeful about this cycle. It’s normal
to see the negatives over the positives I suppose as the stakes are so high. I think 1 15mm and some 12mm follicles really isn’t a bad prospect after 8 days of stims. Are you on low dose? And does your protocol includes and antagonist to help the rest catching up? And your lining still has time to get over 7mm too, I have absolutely everything crossed for you. From experience I’d say it is definitely quality over quantity with the blasts! I had 3 day 5 and they were all abnormal so even if you get one, but good, then you’re in for a good chance.
I’m not feeling hopeful about this cycle although everything with ovulation tracking and timed intercourse was textbook, I’m thinking it’ll just be another BFN and if not it won’t stick again, I just can’t stop thinking about my age.

I really hope things catch up for you over the next few days X

Thank you @clhiu I'm second guessing everything. I've had a crap snights sleep and remembered this morning that I was trying to up my protein, and I forgot to eat 2 of the things I'd planned yesterday.
I also made a mistake a work, it's not the end of the world, but I know that normally I'd have been on it and it wouldn't have happened.

Ugh. It's really hard.
I'm on 225iu stim, so mild I guess. I actually don't know how I'd be on max dose, finding the effects harder this time round 😕 I'm on cetrotide as well, so should hold off ovulation.
We're not transferring this cycle, so my lining doesn't matter as much, buy I was hoping for a fresh transfer on my 3rd go, so if my lining doesn't look good, it'll have to be a FET.

I'm sorry you're not feeling hopeful this cycle ❤️ I hate that it's so hard. There's so many hurdles to even have a chance at getting pregnant. And to then stay pregnant 😪

@Ems123456789 thank you. I'm back on Saturday. I'm already quite bruised. Having to do 3 injections as my stim dose is split. Keep thinking I've forgotten to do one.
I think back to back could be hard but you could do it. I'm finding this hard, but I'll keep doing it. I think maybe I'd think about work / other commitments though. Luckily my boss agreed to me working from home this week. So I've looked ahead to my next stim cycle and will do the same.
Glad you have a time frame to work towards x

@VenusStarr I hope your scan today shows more promising developements, thinking of you x

@Lily1990 I hope things continue to progress well for you

@Newbeginnings22023 did AF arrive so you can move to the next cycle?

Hello, thank you for checking in @VenusStarr @clhiu @Ems123456789, I hope you’re all ok ❤️

My period indeed arrived a day after I posted, so I booked my baseline scan on the 19th to check all is ok before my next cycle. I’m doing a natural FET with a trigger so I’m hoping it’ll be a lot easier on my body.

@VenusStarr I’m sorry you’re feeling down this cycle. I know how you feel but I also know from experience that a lot can change day to day on stims. I usually have a slow start then things accelerate rapidly just before the trigger. Keeping everything crossed for you. Hope you feel better after your scan today ❤️

@clhiu i know it’s hard to stay positive after all we’ve been through, but just remember that you’re doing everything you can to make it happen. Really hope this cycle works for you xx

@Ems123456789 all the best for March ❤️ like @VenusStarr said as long as you’re up for back to back cycles and are able to sort out commitments etc. then it should be ok. See how you feel after the 1st cycle and you can take it from there xx

Hope all is well @Lily1990 xxx

Hope everyone else is as ok as can be xxx

Thank you @clhiu I'm ready for collection. It's planned for Tuesday but a bit up in the air as my lead follicle is 20mm but they want to see if they can push my smaller ones but I'm scared I'll lose that top one. So they've done my bloods and I'm waiting for a call - if they call, it'll be trigger tonight with collection on Monday. Think we're looking at 3-4 eggs (if the follicles all have eggs).

Glad things are progressing @Newbeginnings22023 🩷

Xx

Forgot to say my lining is 8.1mm 🙌 so I'm happy with that. Just got to get some embryos 🤞

Hello all ❤️ thanks for checking in with me, I really appreciate it! I think I’m 5 weeks and 5 days today. I got a 3+ on a clear blue digital test today (had been too scared to do it earlier incase it said 2-3 weeks) so I’m feeling relieved my HCG levels are at least about right. I’ve had zero symptoms which is a bit disconcerting, hoping it’s just the pred and the fact it’s still early. I’ll be back on 14th so will book in with CRP for a scan that week (would be 7 weeks) assuming I’m still pregnant then. 4 of 5 of my past losses had ended by now so I’m desperately hoping the hydroxy and pred are working for me, and will continue to do so.

@VenusStarr well done for getting to this stage, surviving the injections, bruising and the anxiety of everything. That’s fantastic your lining is 8mm and you’re looking at 3-4 eggs. Very best of luck for the collection on Tuesday! Hope you can relax and treat yourself afterwards, and recover physically and mentally.

@clhiu did you have any luck with getting the prescriptions from your NHS RM clinic? Keeping everything crossed for you for a BFP this month, you really deserve it. Just wanted to mention I had a chemical on 15mg pred, so from that experience I’d recommend a higher dose if you can get hold of it and tolerate the side effects. But I know a lot of women take 10 or 15mg and that does the job! Hope you’re doing well.

@Newbeginnings22023 glad your period arrived and you could book your baseline scan for your next FET. I guess that will be late Jan/early Feb? Have you had any more thoughts about whether to add GCSF for the next transfer? Hope you are doing well and feeling positive about it.

@Ems123456789 all the best for your march IVF!

Love to all xx

Hi everyone. I thought I should come back to update you all.

After 3 miscarriages I am pleased to say that my rainbow baby girl was born in July, weighing a healthy 7'4.

We are so thankful to the CRP clinic and to Dr Edge (and Shehata) for helping us.

I hope this post brings you some hope! Feel free to ask me any questions.

@VenusStarr great news about your lining 🙌 Does it mean fresh transfer is back on the table? ! Good luck with collection tomorrow, I hope you get a few eggs and of course it is quality over quantity after all.

@Lily1990 very glad to hear things are progressing well for you, I have everything crossed that it continues this way ❤. Remind me how many cycles on the protocol have you done so far please? And are you on the standard Intralipids plus 25mg Pred or else?
No luck getting through my RM consultant so far. I called and left messages on two separate days last week and nobody called back. Tried several times today already and no answer, I will leave another message.
I also want to try rising an e-consult form to see if I can get this prescribed by the GP off the basis of the private CRP testing and plan as well as the plan prescribed by the NHS consultant, but I missed today's window due to work.
Because I have to make it last, but also because it doesn't agree with me well at all (plus 3 back to back cycles on in when I didn't get pregnant at all and it messed with my cycle) I'm only on 10mg for now, but I hear you that I probably need more. The only thing niggling at me is that they did my bloods for NKC less than 36 hours after I first tested negative from a bout of Covid so I'd imagine they'd be naturally elevated then anyway, no? And that the previous test my IVF clinic did just 3 months prior didn't find them to be elevated at all, just activity slightly higher than optimal range for implantation hence why they prescribed intralipids for FET, but no steroids.

Congratulations @Welshlady89 , I don't believe we spoke before. May I ask what protocol were you on and how many cycles with CRP did you have before the successful one?

Hello all. I hope everyone’s cycles are proceeding well, at whatever stage you’re at, @VenusStarr that your EC went well and @Lily1990 things have continued in the right direction over the last few days.

Just a quick question please, does anybody know if Pred can impact BBT? On account of two small consecutive dips, I think I’ll have to count myself out this month otherwise.

Thanks x

Hi @clhiu thank you for thinking of me ❤️ sorry I've not been back for a bit. Found this cycle tough. I had egg collection yesterday but I ovulated my top follicle just before I went in 😕 which had been my worry as it was already 20mm on Saturday and I'd asked if they didn't want to trigger that day but they'd wanted to push a smaller one. So yesterday was horrible, I'd just written it off. They'd got 4 eggs (they found the ovulated one in the fluid?) But we left with zero hope as everyone was so down on it. I had to book with my Dr, got that in next Tuesday and they said I should do estrogen priming next time because my follicles had uneven growth (the big one grew 5mm in 2 days).
Anyway, had my fertilisation report and we got 3 with standard ivf (they said dh's parameters met with their ivf but we could do icsi of we wanted but I was so deflated I just thought let's save the money for next time). Considering his motility was 5% in October, I'm amazed.
So, 3 fertilised eggs hopefully growing as they should 🥹

I'm sorry @clhiu I don't actually know about the impact of pred on bbt. I did measure it in superovulation but didn't get a bfp. Are you on cyclogest too? What dpo are you? Hope you aren't out 🙏

How are you @Lily1990 ?

Congratulations @Welshlady89 ❤️

Hope you're getting on OK @Newbeginnings22023 x

Thank you!

I was on prednisolone 25mg, progesterone, aspirin and the drip thing at CRP (I can't remember the name of it!).

I also had two shots of Humira before I began TTC.

I was very lucky in that we got pregnant the first month after we tried again (I had 12 months off before that because I was so traumatised by the miscarriages). The protocol worked the first time for us.

I'm not sure I could ever go through it all again and I am so very very grateful to have my daughter. I really thought it would never happen.

@Welshlady89 thank you for the info and very glad things worked out for you ❤️

@VenusStarr that’s an excellent outcome, especially with all the worries and the outlook not looking so good till the last minute! Made sweeter by the decision to save on ICSI paying off 😃.. Are you still in for a possible fresh transfer? And are you doing a multi-cycle package? I’ll keep thinking about those 3 embryos for you hoping they all progress well 🤞

I’m 6DPO, CD23, although my DPO BBT hasn’t been as clear cut as normal and after confirming OD as day 17 (based on 4 days of temperature tracking post ovulation and positive OPK on day 15) my cycle tracking app this morning decided to change my ‘confirmed OD’ to CD19, which doesn’t really make sense on account of both OPK results and CM tracking. If it’s true I’ve ovulated on the 19th then I’m only 3DPO, but I’m also definitely out as timed intercourse will have been too early. BBT developements so far not looking great either way, I would expect maybe a single ID, then it being on an upwards trajectory by now.
I’m taking just 10mg of Pred (as have to make it last) from CD20 (the day my app originally confirmed OD) and 2 x Cyclogests daily from CD19. I woke up to some nausea today which on and off lasted for a couple of hours, including after eating breakfast, but I know too well it could simply be cyclogest so really trying to prepare for BFN.

@clhiu no fresh transfer this cycle. I'm still in shock, it's a long way to day 5 🥴 so this was my first of the 3 cycles, we'll do the next 2 stim cycles and hopefully I can have either fresh embryo or a frostie to transfer on that last one. So I'm just waiting for my bleed, then I'll have a proper cycle and on my next period start stims again. Although they did mention using estrogen in my luteal phase before stims, so like a down regulation I think. Will find out more next week. I guess if we get an embryo or 2 out of this, they might decide against it.
They also said they'd freeze a day 3 embryo from this cycle - if I get one 🙏

Do you want to post your chart? Fertility friend has done that to me before but then my period has arrived when I originally thought from my temps, so most likely, ovulation is when you originally thought. When will you start testing? X

Thank you so much for your kind reply @VenusStarr, I know how nerve-wrecking those day 3 and 5 updates are going to be so you wouldn’t be to blame for entirely keeping off this site!

I think i’ll test Saturday morning, 9DPO most likely, a sensitive test would show a line if positive otherwise I’ll know and can stop the meds x

We didn't get good news today on our day 3 update... my clinic has a policy to freeze a day 3 embryo but the best one we had was a 7 cell, grade 2. They've kept the other 2 which were a 6 cell, grade 3 and a 5 cell, grade 4 😢 but basically said that they don't have much faith they'll develop beyond today. And I don't think the frozen one had good odds.

Found today really tough and not feeling very hopeful about our chances of even getting to transfer as it stands.

How are you getting on @clhiu ? Xx

Hi everyone, sorry I’ve been MIA, busy week at work (keeping busy is a blessing in our world I think).

@VenusStarr I’m sorry you had a tough day. You have one frozen which is great and there’s still hope for the other two, so keeping everything crossed for you. I’m sure they’ll adjust your meds in your next cycle based on the outcome this time. You’re doing the right thing by going for a multi cycle to increase your chances. This journey is so tough, I suggest you take things a day at a time. Today you have a frozen embryo and hopefully more to come xxx

@clhiu keeping everything crossed for you this cycle. Sorry I don’t do BBT/temping so can’t offer advice there xx

@Welshlady89 congratulations! It’s always wonderful to hear positive stories especially after undergoing an immune protocol xx

@Lily1990 hope all is well on your end. My baseline scan is next Friday and all being well, my next transfer should be around mid February. I’ve decided I’ll take the GCSF because I read it’s effective for women with endometriosis, a condition I’ve got. Let’s see, feels really experimental but I’d rather throw everything at this one xx