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

@Chickjen thanks sweetheart, we won’t, we’ve still got lots of fight left in us. I’ve just given DH his full protocol and what’s required to get himself healthy over the next few months and he happily complied. I’ll also be getting myself ready once hcg is out of my system. I’ve never taken the pred before, this pregnancy was just intralipid and progesterone but next will be full protocol and I hope it works! Thanks for the tip I’ll be on everything plus some others. My doc said to be careful with aspirin too because it caused bleeding last time and gave me a subchorionic hematoma but ill try it again next time and just watch it carefully.

@Naticle thanks,that's really helpful. I'll take a look at Instagram. What your sister said also rings true with me; in five years when it's all too late would I regret leaving this particular stone unturned...? I probably would. X

@WeeGi Sorry you're feeling a bit confused - I was the same when I discovered about NK cells via Google, talked to my IVF clinic about it and they said, 'We don't believe in that here', it knocked me for six as I thought I'd found my answer. It took another failed round of IVF (chemical) & doing my own research for me to come full circle on it all again. Yes it's a grey area, and yes a lot of clinics etc don't believe in it but that doesn't mean they are right or that it's not the answer you're looking for. Mr S's success stories speak for themselves really. I think if you believe something is wrong, then this is potentially the right path for you, it really depends how strongly you feel about it.

I would've never found about about my aggressive NK cells or Antinuclear Antibodies (only seen in those with Lupus) or my husbands DNA frag issues, had we not paid to see Mr S. We wouldn't and haven't got these answers via the normal NHS tests or via our IVF clinic, who only do the most basic tests. Unfort to find out this stuff you have to pay, and only a few people like Mr S look into these things. X

@WeeGi will I regret not trying everything in 5 years time is exactly my thoughts too. That and the many success stories that made me feel it was a bigger risk to NOT try.
You are looking at the big picture of NK treatments etc, I wonder if breaking it down would help clear your thoughts. Do you want further tests and are you prepared to pay for them? If so MrS or a similar alternative clinic is a great place to start. Once you know what the situation is for you you can focus purely on what treatments they are recommending for your particular case and how do you feel about them. You are not committing yourself to anything by being tested (except financially 😩)
@Eeviee is in Scotland too I think.

@zoe16 I'm glad DH is on board and doing his bit, I didn't realise you hadn't started pred this time, in that case I think you should have even more hope 😀

@MairMum18 I also favour the tradesmen's entrance for cylogest. I remember when I was first reading this thread that several people spoke about having nasty effects like the ones you've described with the front door so I've always done that. No issues at all.

@ginandtonicformeplease Re. the MIL.... Oh blimey, yes best not to tell her and keep it off Facebook! What's wrong with people?

AF has finally shown up - 42 days! I've just worked my dates out, and if it stays around the 40 day mark then the FET would be right in he middle of a three day business trip abroad. It's not even one that I can get out of. It also seems so long away! Then after that it would be over Xmas/NY, when the clinic is shut. It seems like we've spent over 1k on a really expensive drug but even if it has worked we're not going to be able to benefit from it.

I'm just feeling so down today. We had to have Dcat PTS yesterday. She was old and ill but still so hard. She was on my knee at the end, purring away, and I feel that I betrayed her when she trusted me to look after her. Thank God I'm working at home today as I keep bursting into floods!

Thank you @Chickjen and @Belarita, I may look into the back entrance - But I'm a little worried as I've always seen mine as an exit only kind of thing . I'll see how I get on though.

Thanks for getting back to me with my weird questions, glad I have someone I can't turn to and ask, I find google doesn't have much information for this topic (high NK cells in general). Hope you all have a lovely weekend, I'm sure you'll all hear from me soon x

@Chickjen I’m so pleased for you and all is well. I have been thinking of you.

@ginandtonicformeplease your mil is like my mum. It’s sad as I’d like to be able to share with her but she puts everything on Facebook and tells everyone everything.

I’ve been having a little bit of a wobble thinking about quitting (I don’t think I will though) but I’m 43 and a friend pretty much thought I was mad having another baby at my age 😩

I read about the AIMS study and as someone with repeated implantation failure and a D&C feel like a good candidate for dioxycycline. So I’m trialling it and it might be the antibiotics or it might be something else but I feel so low on energy this past few days. I feel tender in my uterus area today and I do feel as if it is doing something.

Yet with the tiredness and my friend thinking I’m mad, I’m having a bit of a wobble reassessing whether I really do want another baby. I know I do but all these repeated cp’s and mmc are enough to put even mary poppins off.

I know I’ll keep going though but maybe for not too many more losses. With the dioxycycline you take it for 14 days at the start of your cycle then you can try straight away. I’m not sure whether to do that or maybe is it better to have a month off? I keep thinking maybe I’ll miss a good egg if I take a month off.

This is all baring in mind that we are taking a more relaxed approach with no charting, OPK’s, tww madness etc

I just thought it’d be nice to not think about babies for a month but it seems I really can’t let it go even for one month.

@Chickjen yes thankfully I came across this thread and saw all of the amazing stories and asked my doctor about the pred because I doubt he would have been willing to prescribe it if I hadn’t begged. When we realized this pregnancy wasn’t viable then he said ok let’s try the pred next time. I’m just praying that’s all I need next time!

@Wewin @TinyPaws what were your dosages for doxycycline? My doc said I could do 100mg for 10days does that sound right? Last time he gave me 400 or 600mg for five days (I can’t quite remember but it was a strong dose).

@ginandtonicformeplease I'm so sorry about your cat. On top of everything else you're dealing with that must be so upsetting. Big hugs to you. Xx

@EmsIMO @Chickjen Thanks for your replies. It is confusing isn't it. I actually dont really care so much that its classed as experimental, or about the money. My only hesitation is whether the treatment could potentially be harmful to me or baby as suggested by my NHS consultants. I do think though that on balance, Dr S has been practicing for years and if issues were arising surely we would have heard something about them....And also why would the very well respected Prof Quenby still offer it if the risks were big.... I think I probably need to do a bit more research into it before I make my decision. I might see if I can call Prof Qs office to get their take on it.

@Eeviee just wondering how you're getting on with the travel to see Dr S? Is it manageable do you think?

@Wewin I feel your pain. After my most recent mc three weeks ago it's the first time I felt like we should maybe just give up. I want my life back and cant bear any more heartache. But something drives us to keep going. I hate it actually and wish I didn't care so much about it. I feel like it'll come to a natural end one day and I'll just feel like I'm done, had enough. Makes me so sad to think about though. Try not to listen to others about your age I think, they dont really know what it's like and the need that drives you. You can only give up when you feel emotionally ready to.

@Wewin @zoe16 Since you mentioned the AIMS study Wewin I've had a look at it. Is it the same as the CERM study starting under Professor Quenby? It sounds interesting. I dont really want to be part of a study as knowing my luck I'd be in the placebo group, so am wondering- did your doctor just prescribe you the antibiotics? I feel I'd like to try that.

Sorry I realised I haven't properly introduced myself. I'm 39 (almost 40) and have a 7 year old daughter. We've been trying for four years to give her a sibling but have suffered five consecutive losses. The first at 12 weeks due to a chromosome issue, then the other four all around the 5-6 week mark. We also struggle to get pregnant, trying for 17 months then mc, then 9 months then mc, then self funded IVF with failed implantation of good quality fresh embryo, then pregnancy from a FET that resulted in a blighted ovum, but chromosomally normal fetal tissue. No embryos left. Just had another early miscarriage three weeks ago from a surprise spontaneous pregnancy.

We're supposed to be going through IVF again in Nov but I feel it's just about pointless if we dont get to the bottom of the miscarriages. And am also questioning whether we even need it since we can conceive naturally, albeit it takes a while. All my NHS tests for infertility and miscarriage have came back normal. So all this led me to look at other options and that's what led me to you lovely ladies. Its so great to find a welcoming group that just gets it.

I'll stop hogging the thread now!

@ginandtonicformeplease I am so sorry to hear about your cat 💔 You didn’t let her down at all, you have sacrificed your happiness of having her around so she doesn’t have to live with fear and pain. If my days ended being stroked to sleep by someone who loves me I would be very grateful indeed 💐
This might be a bit left field but isn’t there something you can get from the pharmacy to delay AF. I’ve never used it or looked into how it worked but just wondering if it’s an option to help you get a better window for the FET? I’m sure delaying it is the last thing you want to do when you are already thinking it’s too long, but it might speed things up in the long run? Or, if they have something that delays it, maybe they have something that speeds it up too? Just an idea.

@Wewin does your friend have any valid reason for thinking you are mad? Or just because she wouldn’t want to have a baby now she thinks you shouldn’t too?
I think you are a long way from giving up (and I don’t see why you should) trying not to focus on 2ww and tracking etc is a good idea but it is hard to do, it’s just habit now isn’t it? But really you just need to DTD and see what happens (and try not to drive yourself mad in the meantime!) 🍀

@WeeGi immune issues could be a reason it takes a while to conceive as well as MC. But just thinking perhaps it’s worth a look at zita west too as part of your research. @KittyKatSmile and @ginandtonicformeplease are using them as they offer IVF and NK together.

Thanks @Chickjen, I'll look into them. Xx

Also, has anyone on the thread seen Professor Quenby at all? Thanks. X

@MairMum18 back Passage all the way. See how my phone has put a capital letter? That's because I've discussed it so much my phone recognises it as a special term. Ask @Zest11; we've even got a group called the Back Passage Girls elsewhere on MN.

@Wewin something else I would say is to really try and make small changes to your diet: get a shedload of protein and start having a spoon of tomato purée every day. I know it sounds crazy but my clinic told me it's all about getting the best quality eggs and improving your lining. My natural tendency is to think it's all BS but I did it anyway and I was successful and I got better quality eggs and embryos than I was expecting. There isn't anything we can do about numbers at our age but there is stuff we can do about quality

@WeeGi I actually left Dr S and went it alone with Zita West as their protocol is very similar to his but then you're at a one stop shop (and don't have to deal with his wolffish smile )! Happy to answer any questions you might have on them.

@ginandtonicformeplease was going to say the same thing as @Chickjen; I would very much like to slip into the next world being warm and happy and stroked by someone I loved. Take care of yourself xx

@zoe16 I'm taking 100mg twice daily for 14 days. From the research I've done that was the dosage and length of time taken for inflammatory infections of the womb.

@ginandtonicformeplease I am so sorry about your cat. I got a new dog this year and can't imagine how hard it is to lose your loved pet.

@WeeGi I am so sorry about your latest mc. You've been through a lot and I can understand your reluctance to try IVF again. The antibiotics are the same ones you take for malaria and you don't need a prescription, you can get dioxycycline online from a range of chemists e.g. Superdrug and they will post them to you. Obviously, I should also tell my doctor about it next time I see her.

For me it doesn't get easier and only gets harder. I know one day I will just say enough is enough and that day is coming really soon, that is why I am trying all I can before I throw in the towel.

My friend I believe @Chickjen she has grown up children in their mid 20's, whereas my youngest is 5. So we are in completely different phases of our lives despite being close in age. I have children with special needs which intensifies things but I honestly love being a mother and wanted more children. My husband didn't until recently so now I'm desperately trying before my time completely runs out. For me another child would be extremely hard work (I have my eyes wide open) but it would be so so worth it. Family means everything to me.

The losses are hard though and it all gets a bit draining and I know my life would be much easier and simpler to not have another baby. So I don't know for how much longer we'll be on this journey. But for now, it is in my heart and I have my faith and if it is God's will, then it will happen.

@KittyKatSmile thanks for the protein tip! I'm actually starting some intermittent fasting as the pounds have piled up a bit with the pregnancies/losses. I will keep extra protein in mind and try and eat a bit more of it. I hope you are doing really well.

@KittyKatSmile wolfish smile lol Made me laugh. Do you know if the costs for NK Cells testing at Zita West are similar to Dr S? And do they do it for folks that aren't going through IVF at that point? Not sure if we will again or not.

@Wewin thanks, I'm definitely going to get those. Great that it's so easy. If I'd had to get them from my doc I reckon it would have been like pulling teeth. I take it you just need one round of them for two weeks then that's it? And does it matter when e.g. first two weeks of cycle or anything? That's actually made me feel a bit better that I can at least do something myself to potentially help the situation.
Xx

@WeeGi I don't really know about the costs I'm afraid as I rocked up to Zita West already with my diagnosis so they just took that and gave me the drugs for my IVF cycle. It's worth going to speak to them. There are only two doctors there and they are both lovely and so, so kind. Good luck with everything x

Hi @weeGi you take them at the start of your cycle. So mine arrived CD2 and I’m going to take them for 14 days. That’ll bring me up to CD16 and I don’t ovulate until CD18 approx. I see there are variations on recommended dosage but 14 days is the proper length. I take 100mg in the morning and 100mg at night. You should take it with a full glass of water and not lie down for at least 30 minutes after. The pack I got for malaria was 100mg and there was loads in it, more than enough. They were posted and took just a few days. I think it cost me £17.99.

@KittyKatSmile thank you also for the tomato paste tip. I’d heard that before and was going to try and get my DH to do it too. He won’t be best pleased but it’ll bring a smile to my face 😉

@WeeGi yes and just take them for one 14 day period then that’s it!

I’ve had a highly medicalised birth, a D&C and a IUD coil put it (and quickly taken back out again). I’ve felt pelvic pain and I didn’t have discharge but I did have green coloured ewcm at times. Since starting the antibiotics I have felt awareness of pelvic pain again (very slight), tender but that has passed now. A sonographer also commented on my bulky womb before which can indicate inflammation going on down there. So it really wouldn’t surprise me if there has been a bacterial overgrowth causing inflammation down there.

What I’m going to do as well is take a probiotic when I’m finished the antibiotics as they wipe out the good flora which will need replaced for good digestion etc.

@MairMum18 Haa! Yes...there is a lot of popularity out there for the back passage as @KittyKatSmile says! What's this Wolfish smile you talk of? I have my appointment with him at the end of Oct. Anything I shoukd be aware of? I'm actually really looking forward to it. I feel like I've taken back control.
@ginandtonicformeplease I am so so sorry to hear of your cat. As a fellow cat owner I know how you must feel. Cry your heart out. It does sound a lovely way for her to go though...purring and sleeping in her mum's arms xxx
@Wewin I also echo the protein tip. I think I started having loads just before stimming. There's even this protein water you can get from Asda.

So I see Dr S in about a month's time. I've self prescribed 25mcg thyroxine as my tsh is 3 and ft4 is 12. (GP said he wouldn't prescribe it as my results were in the normal range). I'm wondering if I should come off it before I see Dr S or just carry on and tell him at my appt....? I know he is likely to prescribe it anyway with my numbers but from reading comments he sounds a bit mean and scary!

@Wewin thanks, I think I’ll try that dosage and length too. Haven’t been diagnosed with an infection but he said in lieu of testing I could just take the antibiotics. It will probably be good too since I’ve just had a mc.