Immune/NK issues - aka Pred Thread no. 23!

[Chickjen]

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

Thanks @ginandtonicformeplease I’ll check it out. I’ve read some other books on the topic and while they provide useful information I still can’t understand what is really going on in my case. It seems it’s just trial and error until you get lucky.

Sounds like you have a very tough decision to make. I would probably test the embryos that’s already in the freezer if there isn’t a high risk they wouldn’t survive. Although you could do a FET with the NK treatment and see if that works. We’ve been told that ivf would be a waste too given our age and ability to conceive quickly but I’ve also seen young couple with a lot of abnormal embryos. Given our history if we were to go down the ivf route we would def do pgs testing.

@zoe16 The second MMC was with NK treatment - sorry I should've been clearer. The clinic did another NK test after NK treatment, and it doesn't work on me apparently.

Every time a blastocyst is defrosted, there's a risk that it won't survive: one of my friends lost three when they were trying to defrost one. Luckily mine have survived the thawing process when we've done FETs but there's no guarantee. It would also cost 6k to do PGS testing on them, and we just don't have it - we're struggling to come up with the money to do a FET. There's no NHS IVF provision at all in my area - we've probably spent around 20k so far and we just can't keep going.

Oh @ginandtonicformeplease I’m sorry to hear that. Can DrS give you something else? I believe @Chickjen and a few others got alternative treatments as their NK wasn’t responding to the usual treatment.

I see why you would be so hesitant to defrost and test. Is it possible to test one embryo so you wouldn’t be risking them all? It’s so sad that ivf (infertility on a whole) is so expensive. It’s like you have to make a choice between having a child and saving for retirement etc. We’ve been skimping and saving for ivf in case we need to do it but I’m praying we won’t have to go down that route because we would probably only be able to afford one round as well.

Hey all, I’m having a shit time, did letrozole and trigger with Dr S got pregnant first go was delighted on pred and progesterone and the usual, feeling fantastic and on Fri woke up and just had the feeling, that flat feeling I get with my mmcs, was emotional and edgy rang EPU they’ve booked me in for a scan Tuesday I’ll be exactly 6 weeks.

The thing is, I just know it’s all over, I always do, the boob pains have gone, no more running to the loo and the good feeling has gone.

I had used a clear blue digital last Sunday it had went up to 2-3 was happy, used one this morning praying would see 3+ but no was still 2-3.

I know some say they are unreliable but I think generally they show right and I know ovulation was day 12 so should have went up today.

Feel so flat knowing I’m going through it all again and with no kids at 42 thinking I’ll never get there.

Getting through to Tuesday will be a nightmare. Still taking all the meds.

Why does it have to be so hard, I thought this was me sorted and I was on my way with Dr s plan. If this doesn’t work what else is there for me.

@zoe16 Yes, the docs tried humira, and then did another blood test - that didn't work either. The only other possibility is contradicted for women with epilepsy, so that's not a possibility for me.

The way the PGS testing works is that it's the same price for 1-8 embryos - we've got 9 so would have to pay extra to have that last one tested, but just having the 8 tested would be 5k. It would also be 5k if we only had one tested! IVF isn't a path I would recommend anyone going down unless there's no other option. There are also very divergent opinions about PGS testing - different clinics have different standards of 'normal', so some put back embryos that others would discard.

We're going ahead with another FET shortly, and just hoping for the best - the clinic is putting me on the usual pred + intralipids plan in the hope that it will help even a tiny bit.

Hang in there @summertimehere it could just be the pred masking symptoms. I felt exactly like that, I even had bleeding, and yet at the 6 week scan there was a baby with heartbeat. Whatever you do keep taking the meds, and we will keep our fingers crossed for you 🍀

@ginandtonicformeplease have the clinic mentioned hydroxycloriquine (probably not the correct spelling) or is that the one that's contradicted? It's what MrS would normally add next.
£5k for 1 or 8?!! That hardly seems fair 😡

@chickjen Yes - he said that cloriquine (no idea if that's the spelling) is contraindicated and they won't prescribe it. My epilepsy hasn't been properly controlled since I had to cut down on meds before TTC over 5 years ago now so I can't risk it.

Yep, the pricing for PGS doesn't seem fair - I imagine that most people who want PGS don't have the full 8, let alone an extra one. I cannot understand why it's not pay per embryo.

@ginandtonicformeplease I think there is also G-CSF as an alternative to pred, but I think it is just that, an alternative, not an additional help, and I'm not sure anyone here has tried it. Maybe something to google though if you haven't already ❤️
Personally I would do the same as you and give another FET a go before I risked that much money and that many embryos without more solid evidence 🍀

Oh @summertimehere I know the feeling you’re describing and it’s a terrible anxious time waiting for your scan but like @Chickjen have said it could very well be the pred masking your symptoms. Keep taking your meds and let us know how you get on Tuesday. In the meantime try to relax, do some breathing exercises, watch crappy tv and distract yourself💜
@ginandtonicformeplease that sounds very unfair. Do you know if that’s your clinic’s policy or generally....I looked into ivf last year when I thought we would def need it and cost for pgs testing was per embryo and it wasn’t 5k! It was more like 1k per embryo but then if you’re testing multiple embryos you would sort of get a discounted price.

@zoe16 It may be that it varies from clinic to clinic and some it's per embryo. So much varies from clinic to clinic, including the standard for discarding embryos - some will put mosaics back, some will just discard them. Some of the returned mosaics end up being carried to term. I think PGS is a great option for someone who has an inherited genetic condition, but when there's no specific gene that they're looking for the standards vary so much and the efficacy is disputed.

@Chickjen I'll have a look at G-CSF, I haven't heard of it before.

Hello All,

I am feeling very depressed and discouraged. After 2 miscarriages started going to Dr Shehata and was diagnosed with high NK cells . Its been a year including a few months on super ovulation and i have not been able to conceive. As if miscarrying was not enough.

I dnt know what to do. Are there any options alternatives. Apologies for all this but Its just very upsetting and i feel like i am running out of options.

@Chickjen @zoe16 thanks girls I went and visited my sister and chatted her and kept busy and got slightly better sleep last night and think I’ve just resigned myself to it, I’m doing what you say taking the meds, but just know the feeling I get when it’s all over. I’m going to stay busy today as well and try not to think of what’s ahead. @KeepingFaith1 I’m sorry to hear that the letrozole got me pregnant 1st go I think I’d be frustrated in your position what has Dr Shehata said about it? Has he identified any other issues eg thin lining? Do you think there is something else going on? Are you getting good response at the follicle scans?

Hello,

@summertimehere- Dr Shehata just said keep trying. It take times. The lining in all the scans has been good. After eating letrozole at each scan i had at least 2 good follicles. I feel its the pred that is not suiting me and preventing conception. I have checked this with Dr Shehata but he said that it is not possible.

How much time is enough time . How much time needs to pass by for someone to decide this is not working or should i just think that it is not my time yet.

Hi @MairMum18 So I'm on my 8th month under Mr S. I've mostly just taken Pred/Progesterone but have also done 4x cycles of Letrozole (super O) This cycle just gone I took Letrozole but Mr S agreed I could have a break from Pred. He hasn't talked about changing my medication, and to be honest we're happy with the plan we're on. We'll try x2 more of Letrozole, maybe some more Pred only rounds, then we're probably looking at IVF at some point next year (I'm 41 and we have one 5 year old) You need to have done a few more rounds before he'll let you take a break from Pred - Have you considered or talked about a Super O round? Good luck X

On this same topic, I'd be interested to know if anyone knows of anyone who was on Mr S's plan for a long time, i.e. longer than a year?

Thank you for sharing your experience @EmsIMO. I'm happy to stay on the pred, but was worried that once my 5 months are up they would be very much 'we've tried, it's not working, you're on your own' kind of thing. So I'm glad to hear that they're not like that. I was referred to the miscarriage clinic so I'm not sure if things are different to those who have paid privately for Mr S.

I've never even heard to Letrozole so will definitely mention that at my follow up appointment in February and see if they're happy to try that out for me.

@KeepingFaith1 It's so hard, I agree with you (and sorry I seemed to miss this page before I posted my comment above) I've been on his plan 8 months now, with 4 cycles of Letrozole and still no pregnancy. It's so tricky as all down to SO many factors, especially to the right egg/sperm. Has your husband had the Comet test? Good luck x

@ginandtonicformeplease hmm something to think about. I would want to know how my clinic assess the embryo for abnormalities compared to another clinic and how they depart from the general standard. I will def look into this if it should become necessary.

@KeepingFaith1 i'm sorry you're feeling discouraged and its totally understandably. Has DrS given you a break off the pred? Some ladies weren't conceiving on it and as soon as they stopped they fell pg.

Hello,

@EmsIMO- yes my husband has done sperm comet test and everything is fine on his end.

@zoe16- yes took a break from pred but that month i was travelling for work for 3 weeks and missed my window. So dnt know if i stop taking pred it can further my cause. I checked with Dr S and he is against stopping pred.

Does anyone else feel manic while taking the prednisolone? I’ve been fine up until now but now day 8 I just felt totally manic and horrible; I’m assuming it’s the steroids.

@KeepingFaith1 sorry to hear that you’re feeling so disheartened. Did you fall pregnant easily before starting the prednisolone? I too asked Dr S about it’s negative impact on conceiving and he dismissed it, it’s odd as it obviously does that for many people. Have you tried taking a break from the drugs for a month?

I don't know if I entirely know what pred does, does it suppress the NK cells at time of use? (this is what I thought) or overtime does it decrease the amount of NK cells? I can't understand why DrS would be against a break from pred if it was the first?!

I'm so confused. x

@MairMum18 - Took me a while to get my head round it too :) Prednisone suppresses your immune system - The idea being that in taking it, and stopping your immune system from kicking in, in turn stops the NK cells from working and rejecting an embryo. It doesn't decrease the cells x

Hey @Eeviee Not manic but I get dreadful insomnia while taking it, which is fun! Often get headaches too. Hope your symptoms ease X

@MairMum18 yes suppresses the immune system temporarily. I guess he thinks if you didn’t take but still tried you may conceive but lose it if not taking the steroids? Kind of no point in taking them if you can’t conceive though....

Thanks @EmsIMO I ok now but that was horrific. I was driving and felt totally freaked out. Luckily I haven’t suffered insomnia yet..: suppose it affects us all differently.

I’ve found the pred is hindering things. I was on 20mg each day but I’ve tapered it down to 10mg. I’m just going to stick to 10mg then up it at BFP to 20mg again.

Without the pred I was having stronger chemicals each month (few days of BFP). On the pred 20mg I’ve had very weak cp’s or bfn’s. I prefer bfns so it’s been nice to get a break from the chemicals.

My immune system has been weakened. The bronchitis hit me hard and I’ve been ill for 2-3 weeks. Thankfully I’m coming through it. I was so glad I wasn’t pg whilst ill, I could not have coped.

@summertimehere I really hope everything is ok and like @Chickjen says hopefully it’s the pred masking the symptoms.

My micronised DHEA arrived from the states today. It was £50 and will last me 2 months. I’m not ordering anymore. My ubiquinol is £53 per month (kaneka blend 600mg per day). Plus prenatals, steroids, progesterone, folate etc I’m wondering how I’m going to find £600 towards Christmas as all my extra little bits of money have been going towards fertility. I’m sure it’ll all work out though!

Good luck today @summertimehere I have everything crossed 🍀🍀