Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@StillTrying10000 9 weeks, that is so nice to hear!! Fingers crossed :)
Is Tacrolimus the drug that is supposed to be 'tough' on the body? How are you feeling so far, any bad side effects?
Were your frozen tansfers PGS tested prior to transfer at all?
Very nice tip on the prescription, thank you! However don't you find the bulk of the costs are the intralipids?

@HollyLucky yes it’s a tough drug, it gives me terrible diarrhea, I just sob on the mornings I have to get the train to london as it’s so scary I won’t actually get there. The expected side effect list for the drug is crazy! It’s doing it’s job though so I couldn’t be happier. I did 4 collections, 3 fresh transfer, 3 frozen PGT tested. About 50% of my embryos had genetic issues, I’m 33.
Yes intralipids are a lot, I’ve had 15 now! I think it’s a way he funds the clinic which I’ve accepted I’m okay with and it’s the same treatment all the top clinics offer as it does work for a lot of women. Due to the Tacrolimus I have to had blood tests every 2 weeks so that’s costing me £700-£1000 a month! £65k down so far but I can’t fault them. Let’s hope this baby is the one! xxx

@StillTrying10000 It’s crazy the things we endure and the costs we face, but it will all be worth it in the end ! I can’t believe this drug is giving you severe diarrhoea, so crippling :( I am crossing everything for you for this baby to be the one :)
I’ve searched online for Filgratism and everything seems to sadly indicate it makes no difference in pregnancy outcomes.. Will have to have a thing as to whether I should take it or try my FET with steroids intralipids and fragmin only xxxx

Hi everyone, hope you're all OK.

Just an update from me, my frozen embryo transfer was cancelled yesterday 😔 my lining just didn't respond to the estrogen. I've got 2 theories why - I was on estrogen in my superovulation cycle which was long, so I only had a few days off it. But also, I've been put on metformin by Dr S for my adenomyosis (it was a let's try this rather than a clinical need) and I've since read it can inhibit estrogen.
So I need to induce a bleed and then see my ivf doctor on cd9 for a scan and plan next steps. I've stopped the metformin and want to try a medicated FET once more just to test that theory. So more waiting.

@HollyLucky I've got gcsf in my protocol now. I had 2 losses on the full complex plan (pred, intralipids, hydroxychloroquine, clexane, aspirin, plus lubion and cyclogest) one was a chemical and one was a MMC, both ivf pregnancies. Ww tested the baby and she was healthy, so Dr S added it.

How are you feeling @StillTrying10000

Hope everyone is OK ❤️

I'm so sorry to hear that @VenusStarr , it's all very unfair. Better to wait for a good lining though than waste one of your embryos, but it's horrible to have psyched yourself up to then experience yet another set back. I'm so sorry :( Hopefully stopping the metformin improves the situation. Will you be able to do the FET in the next cycle if your lining looks ok on CD9?

@MyEasterEggs I was looking into the Cytoplan Methyl factors and one of the websites selling it says it's not suitable for use during pregnancy. I'm not sure if that's just a generic "cover our backsides" kind of statement or if there's really a safety issue with it. I've looked into dietary sources and it sounds like I'm already eating a lot of foods which are good sources of methyl donor nutrients so hopefully I'm covered either way. I was a little bit disappointed that my GP would only prescribe me folic acid instead of folate, and Prof Quenby confirmed folic acid is fine, which surprised me. Once I've used up my low dose folate tablets I will start ordering the high strength folate and not bother with the folic acid prescription. So much of what I've read implies folate is much better if you have an MTHFR mutation!

Thank you @Sezmarelda1 it is rubbish, but I had a sense of doom from the start of the cycle, I put it down to anxiety of it being our last embryo and not feeling ready. I'm not going to rush into the transfer.
In theory, I guess we could do a transfer on my next cycle, but I don't have my immune protocol for a natural FET (probably not that different to a medicated one really). But I'm not sure I want to. I've done some more reading on metformin and estrogen and think that could be the issue, so I think I'd like to try the protocol again without it. I think maybe having some time off ttc / meds might give my body chance for revover.

How are things with you? X

I agree @VenusStarr , it's definitely worth taking your time and making sure your body is as ready as it can be. An extra month or two isn't a lot in the grand scheme of things if it improves your chances of success x

@VenusStarr sorry to hear that and wish you luck for next time. I’m bordering cancelling my appointment this week. I always suffer with insomnia after each miscarriage (probably my hormones being all over the place), but I’m now using sleeping tablets most nights and really just don’t think it’s the right time. When we were trying/ pregnant each time before I was completely fine and didn’t need them. I know this is only temporary because I’ve been here before but it’s just making me feel I couldn’t handle the whole process 😟

I really feel your pain with the insomnia @Ralowi , except I get it whilst pregnant too. I think for me it's a mix of anxiety and hormones, and the lack of sleep makes it so much harder to cope with day-to-day things, which makes the anxiety worse, which makes the insomnia worse...do you struggle to get to sleep, or find that you wake early and can't settle again? I get the latter. My GP prescribed me Zopiclone after one of my miscarriages and it didn't really help. I found Amitriptyline to work miracles though, I took it for about a week at the lowest dose (back around March/April time I think it was) and it got me back into a healthier sleep pattern and I've been mostly ok since. Time definitely helps too, like you say. Insomnia is just horrible when you're in the midst of it :(

@Sezmarelda1 oh I get it all the time but in pregnancy I think it helps as I’m more sleepy. Now I’m in a position where I still have a load of pregnancy hormones and I think my thyroid is probably not helping. So I am needing to take more zopiclone than usual. I used to
take amitryptilline but found it stopped working after a while. At the minute I just feel like if this is bad, how much worse is it going to be taking pred and all the rest of it? And not being able to use any sleeping tablets. I just really don’t know if this is for me no matter how much I want a baby 😢 just a massive setback because we were in such a good place ttc this last time and now 12 weeks on it’s ended in surgery for the third time. Really just messes me up mentally!!

Question for anyone taking Humira on Dr Shehata‘s plan: did you have the repeat blood test two weeks after the second injection or three weeks after?

When I had my appointment about it I’m sure I was told to have the test after three weeks and I marked that in my calendar. But I emailed them yesterday to double check and was told to test after two weeks. Very confused.

@Ifitistobesaid I'm taking Humira and having the follow up blood test two weeks later x

@Onwardsandupwards1206 thanks. Not sure how I got three weeks as I went through it all with the nurse and marked everything in my calendar while I was with her. Good thing I checked!

@Ifitistobesaid I think it just has to be at least 2 weeks later. So I imagine 3 weeks would be fine too

Hope everyone is as well as they can be doing. It feels like lots of us are having a rough time so I’m sending lots of love 💛

I had the results of my immune tests back this week and my CD69 count is 1.19% (up to 1% being normal) and TNF alpha was 35.2% (up to 31% being normal).

The suggested treatment for this is prednisolone 20mg from 3 days prior to FET, reducing to 10mg at 10 weeks, 5mg at 11 weeks then stopping at 12 weeks.

Intralipids will be given at 5 days post FET. I’ve asked if further infusions will be given.

Interested to know how this compares with the results and treatment others have had?

Hi @MyEasterEggs which clinic are you with? I’m with Dr S and he prescribed me Humira as my TNF Alpha was just a bit higher than yours - think mine was about 36%.

I’m also on hydroxy and metformin at the moment (metformin is for my PCOS). We haven’t discussed the details of my transfer protocol yet but I believe I will be on predisolone and intralipids too. Not sure which doses yet.

@Ifitistobesaid I’m with The Evewell.

What was your CD69 absolute count? And what’s the hydroxy treating?

I’m on metformin too. Planning for FET in a couple of weeks or so as my consultant is on holiday then I’m relocating. I think I’ll be looking at September now. Feeling okay about that though as gives me time to prepare my mind as well as my body!

@MyEasterEggs I had my CD69 tested in October 2020 and my activated marker was 1.32 (his normal range cut off was 0.8 so my result was considered high). He hasn’t retested it so I don’t know if it’s gone up or down but he’s treating it anyway with the hydroxy and giving that time to get in my system. I have to see if the humira has worked to bring down my TnF Alpha before I know when I can do a transfer.

As far as I know Dr S is one of the only ones to prescribe things like hydroxy and humira for immune issues. I’ve heard of several of the IVF clinics prescribe things like predisolone but I think Dr S uses a wider range of drugs.

Hi, we had our first appointment with dr s yesterday (SO EXPENSIVE!). I had the majority of the bloods and he also insisted my husband have the sperm dna test and prescribed some pre convention vitamins (multivitamin with omega 3, vitamin d3, aspirin and coenzyme q10). I only had my surgical management for mmc 2 weeks ago so I don’t expect to be in a position to ttc for another 6-8 weeks really. Just wondering do I really need to start taking all this now? He also told me to cancel the hsg my recurrent miscarriage clinic ordered as said that’s very painful and you don’t need it as you haven’t got anything wrong with your uterus (I have a 4 year old but I have had 3 d&c since then). He was confused as to why it was ordered and didn’t think half of the tests done on the nhs were relevant, yet some were missed so ended up having to pay for them at crp yesterday. Feel as though we are going to part with a lot of money and know some of it is probably unnecessary but have to go along with it! Thankfully he can do our follow up via zoom as we spent 7 long hours in the car yesterday x

Hi @Ralowi it's a lot to take on isn't it? I'd probably do the vitamin D and maybe the coq10 (although I take ubiquinol as its apparently better absorbed). But you can probably hold off on aspirin and the others until you're ready to ttc again.

We didn't do sperm dna fragmentation and still haven't. It's something we may do, but I'm convinced it's all me. Interesting that he said not to do the hsg (it is very painful). Are you worried about scarring?

I hope you do get some insight into what's going on. When is your results appointment? Xx

@VenusStarr thank you I will do that. I feel like it surely doesn’t have to be built up over 2 months prior! He basically asked did we do anything differently when we conceived our son. I said not that I remember, to which he said it could have been anything, a stressful event or an antibiotic for example. Was quite surprised by that. He was really insistent about the dna test even though we were hesitant. But because we didn’t want another trip to Epsom we were kind of pushed into it there and then. He said just to rule out you’ve got 2 problems coinciding. Our follow up isn’t until end July as dr s is in Hawaii for 3 weeks now!

Hawaii 🤦🏻‍♀️😑

@Ralowi I've often thought should we have just done the dna fragmentation at the time. It's hard to know. No one has ever been able to tell us would the babies be chromosomally normal, as 2 of ours were. X

@VenusStarr feel like we’ve just lost all concept of money already! A lady I spoke to there did say the nurses sent some of the results via email a week after so I’m hoping for something although there’s no real rush as I won’t be able to start treatment for a while. Which is good really as I’ve got the summer holidays to get through and not sure I could deal with a 4 year old while on all the medication! We only had one of ours tested which was normal and I personally think the majority of our losses haven’t been chromosomal issues, fully expecting to have active nk cells! What I find odd is that even if they don’t find anything you still get put on treatment, my husband has just pointed out of his dna test comes back normal it’s still recommended he takes a £120 supplement and a £150 lifestyle consultation! Surely they will only tell him to limit his caffeine and alcohol lol. Yeah Hawaii, he’s definitely in the right business!

Hey ladies I hope everyone is doing ok.

So I'm having a weird cycle, I had the Gonal-f injections last period but no trigger as Dr Edge thought I had overstimulated. I've kind of disputed that with the nurses as I was triggered by Dr S when having 4-5 follicles before so one of the nurses is going to take this up with Dr S on Monday.
Anyway I didn't get a positive ovulation while testing and I think I gave up on day 18 as I always ovulate btw day 13-16.
Period is now 4-5 days but negative test. I used a frer so they are usually reliable.
Called the clinic yday after numerous attempts and they are going to see me next week.
Could I have just ovulated super late?