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!

@VenusStarr I was buying nivestim brand for £246 from Asda and £300 from Tesco. My last batch I ordered from Tesco and they gave me the Zarzio brand for £60! I asked them to double check if that's correct as I didn't want to take the wrong medication. Pharmacist double checked and said it was correct so I took it 🤷🏽‍♀️. I compared it to the ones I had at home and they were exactly the same just the box was different packaging.

With my first pregnancy I was under the care of Dr S but with my second I was only seen by Dr E so yes she was reviewing my plan etc

Thanks @Sophi81 I'll check it out with Tesco. X

Thanks for all the congratulations. I am both delighted to be pregnant but convinced I've messed up my chances. The thing I really don't like about all the medication is that sense of not knowing if it was that drug or approach which what makes the difference. I'm making decisions based on fear rather than confidence right now. Which is different to my first pregnancy (but even saying that - what a lucky position to be in).

@Sophi81 congratulations on the birth of your little one. @NessyT91 I also remember you and congrats on your pregnancy. That's great you've been able to get intralipids from your doc.

@VenusStarr thanks for starting the new thread and hello again. And hey to everyone else on this gruelling journey. I'm always grateful there's a community of women to talk to about this very unique and challenging experience. Sending love. ❤️

@VenusStarr thanks for the check in. I'm sorry to read how you are feeling. It is so disheartening and really consumes your life. I'm just in the waiting to try camp. On complex plan plus pcos meds but Dr S wanted me to have repeat th1/th2 bloods after my 1st course of humira. Been on hydryo since 1st apt so hopefully in my system once we start trying. Has my hysteroscopy which was clear. Just hoping my levels have come down and don't need humira again. Will then have intralipds and pred once trying. The hydroxchloine make me feel a bit rough and no matter what I drink with the coating sticks in my throat!! Sending wishes to everyone. It isn't easy and I'm not sure how much I've got in me to continue after 5 miscarriages but haven't tried the immune treatment yet so hoping this works quickly!

@Privatemedical246 hydroxy is gross. I take them by putting water in my mouth and then tilting my head back and dropping it in. Mostly don't taste it.
I hope your bloods come back OK and you can start soon ❤️

It's good to have women to chat to who understand @KtAgs it's very isolating and even when I try to explain meds and protocols to people they just don't get it.

Bfn this morning (test day is tomorrow), so don't see that changing. I've not bothered with cyclogest today and already had a bit of spotting, 11 days past trigger today. I usually have a 13/14 day luteal phase. So it's a bit frustrating. Definitely can feel af brewing.

Hello everyone, well I've been officially discharged from hospital after my Ectopic, thank you for your wishes & allowing me to vent before I really appreciated it. I've signed up for talking therapy so that should help.

It's nice to see some of the positive stories, gives some hope that all this may work sometime. So far I have just followed the plan and done what I'm told but I'm wondering about ovulation intralipids. When I look back at my results, intralipids are supposed to reduce my killer cells by 88% but after 6 cycles, I'm just wondering if they are worth it... but also if I don't do them, then I'll probably wonder if that's why I'm not getting pregnant if it takes time when I start up again... How do you approach Dr S about not doing something such as intralipids because when I tried last time, he basically shut me down and said everyone follows the plan...! Not sure what he'll suggest after this! Bit nervous about the thought of Superovulation, not sure I want to be triggered with a large follicle because I can't help but feel that's why I had an ectopic, probably not the case at all but I couldn't understand why I was triggered when follicle size 'wasn't ideal!'
I'm a little bit behind so I do hope you are all ok. I'm so sorry @VenusStarr that it was BFN, I'm sending you lots of love & hugs 💞

@Deerdancer34 hope you are recovering well
I'm sorry to hear that it was a bfn @VenusStarr
Ive found out that my th1/th2 levels have hardly come down which now makes me think it's just not going to work!! I guess I will have to repeat the humira and wait again. Will have to see what Dr S says. But my th1 hasn't even come down 0.1 my levels are exactly the same!

Good to hear from you @Deerdancer34 ❤️ I'm the same, just followed the plan but its not worked. I'd do intralipids if pregnant but I'm debating the ovulation one. I also think he doesn't use them at all in his NHS clinic and has success... also they have to recognise the cost and when you're not having success, it's too much. I've not broached the subject yet though!

@Privatemedical246 I'm so sorry 😞 it's really disheartening to try the treatment and it not work. Did he explain why it might not have had the effect this time? I'm sorry it's delaying you too ❤️

Bfn this morning. Which I already knew. I'm not even sure I did ovulate properly. I did get really intense pains the day after trigger but I'd also done the gcsf and generally felt unwell. But my resting heartrate has been my pre-ovulation rate all week and my bbt temps were crap too.

We had a good talk yesterday and think we'll stop superovulation now. I think we'll go back to ivf. After the disaster last year, I'm not confident about one round, so thinking about a 3 cycle package to bank some embryos, if we get any. The other part of me is also thinking about a day 3 transfer. Still need to iron it all out and we don't have all the money yet, especially with the immunes on top. So not doing superovulation and just loosely ttc in the meantime (without ovulation intralipids), should help save in the next few months. I was hoping for November start but need to talk to the clinic. I'm also going to ask for a change in consultant. This will be our last go. So I'm seeing it as let's give ourselves the best possible chance but if it doesn't work out, I'll know there is no more we could have done.

Hi @VenusStarr sorry to hear it was a bfn but good to know you have a plan in place. I’m planning for IVF as well in September/October and it’ll be our last go.

Congratulations to all those who had a recent BFP or birth, always nice to hear good news!

I’m preparing for my appt with Dr S on Monday so I have a question: does he do IVIG? I read that it helps lower TNF alpha but I have a feeling he doesn’t offer this (also couldn’t see it anywhere on his site). Can’t take humira so just really looking for alternatives.

Hi @Newbeginnings22023 I think he does use ivig but not often because it's so expensive. But if you can't take humira it might be an alternative. Although i don't know anyone who's had ivig with him.

Thank you. I feel better now we've got a plan ahead now. I've reached out to our ivf clinic. We've been out for drinks tonight which has been nice.
Hope you're OK xx

Thanks so much for this @VenusStarr. I looked up prices of IVIG and wanted to cry lol. Will do some research and ask him tomorrow, see what he says. It’s such a minefield isn’t it?!

Glad you’re feeling better and have decided next steps. Which IVF clinic do you use?

That sounds lovely, hope your DH is well too. I’m ok thanks for asking, will report back after my appointment tomorrow xx

Congrats to everyone who has had a recent bfp, it definitely does give us all some hope!

I'm so sorry to hear about the bfn @VenusStarr I was thinking about you yesterday. I'm glad to read that you've got a plan in place for next steps, does that mean you will now stop all meds until you can do an ivf cycle? Have you thought about doing a round with CRP? Are you planning on having a few months off?

I had a really disappointing scan! So usually I get 2 follicles on letrozole 5mg and this month I was on 7.5mg hoping for more - but i only had ONE! WTF
I was so disappointed, dr edge was just as disappointed but it was an ideal size for trigger she said (20mm) so we triggered at the clinic and i had my intralipids even though I was debating whether there's any point. I think even she is starting to wonder why it's just not happening for us, I ended up breaking down while I was there, this is my 5th SO cycle back to back with a polyp removal surgery in between too and then 4 ivf transfers before it pretty much back to back too so it's all just getting to me now. She did say i have a few options, she said if this cycle doesn't work, then to try 10mg next month (which i'm not sure will do anything if 7.5 didnt?) and then after that we will have to go back to ivf so i may be doing it with you too @VenusStarr

I just don't know which clinic to go to, Dr s told me Create is a waste of time the last time I saw him, and to be honest i didn't have a great experience with them so I won't be going back there. And dr edge mentioned CRP do a really good ivf cycle, i think you're put on menopur and gonal f and you have loads of monitoring based on your cycle/bloods etc and they make changes accordingly. So, i'm contemplating whether to just stick with them to get more of an individualised plan, its just distance thats the issue.

Gosh this process sucks x

Oh @star2022 I'm sorry about your scan. It's so disappointing, especially when you've previously had a good response. Personally I'd be wary of more letrozole and I'd prefer to try gonal f instead (I have no evidence for why, but I just sometimes find more meds makes my body shut down).

My clinic is create and I got on ok with them, they monitored me really well, maybe it depends on the site youre at? I think you definitely have to go where you feel comfortable though. I like that it's mild ivf and I think for my amh that feels better. I did look at crp for it, but I just don't think it's feasible for us for the travel, dh's job, plus the money. Their cycles were around £8k plus immunes for 1. I'm looking at an embryo banking package as this will be it for us.

I'm going to stay on hydroxy but not anything else. We're going to try anyway but I'm not telling the clinic. I've got some meds if we did miraculously conceive and then I'd be following the plan with crp anyway, just not from ovulation.
We've got to save some cash, so at least 2 months off. But I've reached out to the ivf clinic to get the ball rolling as I'll need to start from scratch with bloods etc so if we can work on those things in the meantime it won't feel too bad. Plus work is horrendously busy so realistically my first window to do a cycle would be the end of October anyway.

This is a crappy, crappy process ❤️

@Newbeginnings22023 good luck for your appointment tomorrow. It's a minefield but I hope you feel more clarity after you've spoken with him xx

@star2022 The letrozole is confusing isn't it... For my 1st cycle I had 3 follicles on 5mg, then 2nd 2 cycles I had only 1 dominant follicle at 24/25mm on 7.5mg. She said if 3rd cycle didn't work to have 4 tabs the next time but like you, if it doesn't work on 7.5g, why would it work on more!? Crossing everything for you, that's a good follicle size and you only need one 💪but I get the frustration when it doesn't work, I also don't really understand why it doesn't!?
@VenusStarr I'm glad you have a plan it place, it feels far better when there's something to follow.

Lots of love to you all wherever you may be in your process 💖

Thank you @Deerdancer34 💓

Af arrived at 2.30am, it's quite heavy and painful considering my lining was only just over 6mm. I've messaged the clinic to say we're not doing superovulation again and going back to ivf, so just waiting to see if they'll reply.

Does anyone know - do they do any kind of mdt reviews at the clinic, just wondering if they actually review any of our cases themselves, like ivf clinics do? I've been under them nearly 3 years now and just would be interesting if they were sitting together thinking what can we do differently?

Hope everyone is doing ok xx

Hi @VenusStarr and all, thought I’d send a quick update after my appt with Dr S. He wasn’t too happy that I didn’t want the humira but he understood that I was basing this on the advice that I got from the TB specialist.
Anyhow, he put me on hydroxy which I started today for 6 weeks, then I’ll commence IVF alongside his complex plan. Would appreciate experiences from those who have tried hydroxy xx

Hope you’re feeling ok @VenusStarr xx

Hi @Newbeginnings22023 I'm glad you've got a plan. I've been ok on hydroxy, it just tastes absolutely vile, so try not to hold it in your mouth or anything. I don't think I've had any particular effects from it though and I seem to tolerate it fine.
Are you starting tomorrow? Glad you've got a plan and a date you can get going.

I had a nice message from crp today after I told them. I've heard back from my ivf clinic too, so we're changing consultant and hopefully having an appointment later in August to look at the options. I wish it wasn't this hard. Xx

@Newbeginnings22023 I've been on hydroxy for about 6 weeks now. I felt a bit groggy after them at lunch time so dr S agreed I could either split them to morning and evening or just take in the evening. They are horrendous to drink as @VenusStarr says try not to let them touch the sides of mouth. But otherwise no major side effects. I had my call today with Dr S and I've got to have another round of injections before we can try but said no repeat bloods needed so that's something. Glad you've both got plans. It's hard this journey but at least a plan feels like you are working towards something. Xx

@star2022 sorry to hear you have been disappointed but reading your story reminded me of exactly what I went through. I had about 4 SO with dr edge and was getting 5 or 6 follicles! After triggering I wasn't getting pregnant! Then on my 5th SO I only had one follicle! I was like wth, So they upped my Letrozole to 7.5mg and the next 2 SO cycles was still one follicle! Again I was like wtf!!! So they decided to keep me on Letrozole and give me low dose gonal f. So this gave me 10 follicles but we had to stop treatment as my ovaries had over stimulated and I ended up in a&e. So we had a break for a month and went back to review the plan. At this point I had not taken Letrozole as we only went in for a scan. Therefore there was only one follicle there and dr E decided to trigger and asked us to try. I wasn't really optimistic as we had 7 or 8 SO cycles and if I couldn't get pregnant on that there was no chance I was going to do it on one follicle. Plus we were already discussing IVF with CRP and costs etc. But we did get pregnant shockingly. So just wanted to say I can totally understand how frustrating it is but it is possible to conceive with just one follicle.
Now I don't know if this happened because we had stopped all medications for 6 weeks. But I had a feeling that contributed. But I may be wrong 🤷🏽‍♀️

@Newbeginnings22023

I was put on hydroxy twice and both times I had hair loss issues after one week of taking them. Crp said it's unlikely it's the pill but I'm certain 100% it was the pills. I refused to take them after a week the first time and after 3 weeks the second time. I absolutely hate that pill and glad I stopped. Obviously each time I was scared I might lose the babies but luckily I've had 2 babies now without being on hydroxy xx

@VenusStarr I started hydroxy today as I had the meds with me and it happened to be lunchtime! You’re right about the taste, so gross, and I’m feeling a bit nauseous so will see what the next few days bring! At least as you say there’s a plan in place while I wait for my IVF cycle in September. Glad you’ve heard back from CRP and the IVF clinic and have an appointment scheduled in August. Hope it goes well, IVF/fertility journeys can be so long and hard xx

@Privatemedical246 thanks so much for this. I’m already feeling nauseous, which sucks lol. If this continues I may ask him if I could split the dose too, thanks for the tip. The journey really is hard but as you say having a plan is a positive. That’s good news that you won’t need to repeat bloods, one less thing to worry about!

@Sophi81 thanks so much for your response. Ooh that doesn’t sound good, let’s see how it goes. I don’t have a whole lot of options to lower my TNF levels so hope the next few weeks will be bearable.

That’s such lovely news for you, and reassuring. Thanks for sharing your experience xx

Hi all, I'm thinking of forking out for the CRP clinic but I was hoping you might be able to offer some advice? I feel a bit like a rabbit in the headlights.

I've been paused ttc since May, I've had 7 pregnancies, 1 live birth, 1 ectopic and 5 miscarriages. Some early, some less early (8-9wks).. I've had three emergency surgeries now from failed pregnancies and as desperate as I am to ttc I just don't want to do it again.

I saw Prof Brosens in Coventry, my uNK cells were low and I've been on stigaliptin for a few months. I can't find much about this online and don't feel super reassured that this will make a difference. But I wonder if my uNK cells are low this would mean that Shehata couldn't help me?

Hi @RumandSpinach I'm sorry for your losses ❤️
I also saw Prof Brosens before I saw Mr Shehata. Initially I had normal nk cells so just tried progesterone and had my 4th loss who was a healthy baby (have you tested any of your losses?) I did another biopsy that showed very low stem cells so I tried sitagliptin but I think it caused me to have lining issues.
After my 4th loss we went to crp clinic and my nk cells are normal but the activation is exceptionally high so they kick in to attack my pregnancies. Sadly the treatment hasn't worked for me so far (had another loss of a healthy baby on the complex protocol). But knowing that there is definitely a reason and that there are treatments does help.

It's just very expensive to get the tests and then ongoing treatment (I do think my case is very rare though and most people do seen to grt the diagnosis, get pregnant quickly and the treatment works for them). X

@VenusStarr so sorry for your losses. Recurrent miscarriage is really shit.

I think I will go for it. I realised I was thinking that if I have loss #7 I'll spend the money but that's really stupid, isn't it?

Bit gutted that Prof Shehata doesn't have any availability till September. I can see Ms Edge for tests but not results.. I really can't stand waiting to ttc another month (paused since April for the Coventry biopsy/stigaliptin) so I may have to accept I'll be 11dpo when I start treatment. I know I should wait but I just viserally feel I can't anymore, if that makes sense?

@Sophi81 I'm really intruiged by your story. Its weird how the higher the dose of letrozole, the less follicles or so it seems, that's what happened with me... But what I was wondering about, was how did you go in for just a scan without taking the letrozole? Does that make sense? Could I for example request a scan without taking the letrozole and give that a go? I feel a bit panicked about having too many drugs after this Ectopic. I am going to try and get a review appointment for the start of September I think.