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

@WeeGi I’ve only travelled down to London twice so far, once for tests and another for results. I’m most worried about costs if I have to travel down every few weeks for intralipids but there’s not really much point in worrying I suppose, do enough if that! I’ve got my drugs but haven’t started them yet- Im scared to try again 😔

I still haven’t got my period back since my SMM in July, the 2 times before I miss tied naturally and my period returned within a month but this time it’s taking forever- has anyone else had similar? X

Hi all, I'm on cycle 3 this month and hubby is having trouble "performing" I just went off at him saying I'm going though all this and he really doesn't have to do much at all which has caused him to shut me outand go to sleep! I'm feeling quite angry about it all! I get that he feels under pressure but I am having to take all these pills and do all the hard graft. He just has to do what he usually does!! Anyone had this problem and have any words of wisdom? It looks like we might have missed our chance again this month because of this but I'll have to take the pred etc any way just in case . So frustrating!

@WeeGi From what I've read on here, Zita West testing is about the same price as Dr S (I've only been through ZW). The NK cells test was just over £900 I think, though if they run thyroid tests and a couple of others at the same time it's £1200 ish.

What's seemed different though is that they repeated the tests after I had my second miscarriage while on their protocol. I had to have two intralipids infusions, then another test - that one was £450. It came back as showing that the NK cells were still far too high, so I've had to have a course of humira, then another test on Monday to see if that's worked instead.

Thanks everyone for your kind thoughts about my cat - I miss her so much 😥

@Wewin thanks very much for the info. Do you know, its really interesting what you say because I've had a pain in my lower left pelvis for four years (about the same time weve been struggling to have a baby). I've been to my GP on three separate occasions about it and was sent for scans on which there was nothing evident. I had a CA125 test for ovarian cancer and it was clear (thank goodness). And since that each time I've mentioned it to my GP or fertility doctor they've said "oh we've looked at that and its nothing. Sometimes women just get pains down there" and they've said it wouldn't be linked to my fertility and mc issues. I've always felt it must be linked in some way but couldn't find anyone to take me seriously.

I've had a long labour with forceps delivery, a d&c and various internal examinations and procedures, any of which could cause infection. And this evening I've been on Google looking at PID and Endometrisis, and it seems to all fit. Since my last miscarriage my pain has flared up as well and is spreading across my abdomen. I actually tried to get another gp appointment this week for it but couldn't, but I'm determined to see someone this coming week. I'll go armed with web pages of evidence to show them! I'd like to be tested, but if they refuse I'll definitely be taking the doxycycline anyway. I'll be so angry if it turns out I have that after years of them telling me it was nothing. Not once have they taken a swab or offered an internal examination for it. Of course, it might not be that but it just all seems to fit.

It sounds like taking the doxycycline is the right thing to do for you as well. It'll be interesting to see if your pain etc stops after your course of treatment. Xx

@Eeviee yes I have the same concerns about the travel. Costs could mount up. I know what you mean about being scared to try again. Only today DH and I had a conversation about adoption as a possible option, as we just dont know how much more we can take.

@ginandtonicformeplease thanks for the info, that's really helpful. X

@kdd1980 my husband is similar, not so much about performance but in reaction. Any slight hint of criticism and he shuts down and sulks. As much as I 100% totally agree you have all the hard work to do I think you are going to have to bite your feelings and stroke his ego. Try and make him feel important and vital and that you want him because he's so great and not that you are just after a baby. Can you do something today to spoil him? His favourite meal, something like that. And mentally give yourself an oscar 🍀❤️

You’re welcome @zoe16 and @weeGi. I’m quite looking forward to finishing the antibiotics as they have made me feel a bit unwell or maybe it’s a cold. Either way I’ve felt tired and had night sweats too. My legs have also felt a bit week but I seem to be coming around now after being on them 5 days already. I personally do think they are working. I don’t know if it will lead to a successful pregnancy or not but I feel better in myself knowing that if there was anything there, it’s gone now. The pelvic pain for me was intermittent and it was moderate during my mmc in June/July. I was having to take painkillers whilst pregnant as the pain was very noticeable down there. Then there was the times of green-tinged ewcm and then spotting before ovulation.

@weeGi I hope you get to see your GP but if not remember you can get the pills without a prescription. I had a screening done recently where they tested for standard sti’s which all came up negative but regardless with my symptoms I do feel there was something there and am reassured now to have taken the antibiotics anyway. I don’t mean I thought I had an sti but some sort of deep low level bacteria overgrowth that may not have been picked up by the standard tests.

@kdd1980 I’m sorry to hear BD’ing I’d pressured and frustrating when doesn’t happen. My ex was easily put off due to pressure etc so I know how frustrating baby making can be. You asked if anyone had any words of wisdom... apart from getting him drunk you mean? (just kidding!), I just had to keep him really sweet and get nice and relaxed and hope for the best. Maybe try some new things that you both would enjoy. But if it doesn’t happen, just let it go and then he won’t feel as pressured next time. I know it’s difficult though especially if you want to be pregnant like yesterday! You sort of have to pretend that there’s no pressure and it’ll happen when it happens. Then it will happen because he won’t feel the pressure. Hope that makes sense!

Started doing some fasting. Think I’m going to get some organic plant based protein powder (and tomato purée)!

@Wewin the nutritionist at my clinic recommended Pulsin, Pink Sun and Solgar protein powder.

@KittyKatSmile thanks I’ll get those ones next time.

My fasting is pretty light weight at the minute. Eat breakfast and fast for the rest of the day until dinner then fast again til breakfast. I’m looking forward to adding extra protein to my diet at meal times.

Thanks @Chickjen and @Wewin. I think he's snapped out of it now! I hope his little "blip" didn't scupper our chances too much this cycle . I'm not going to tell him when I get a positive opk next time and will keep everything hidden from him. Thats if we need another month 🤞 This is cycle 3 of 5 so I'm really wanting to take these last 3 as seriously as possible.

I hope everyone is ok and getting on ok with all the various drugs and side effects

@Wewin @zoe16 if taking the antibiotics the first two weeks of your cycle, do you know if its definitely safe to try to get pregnant that month? I see they are contraindicated in pregnancy so I wonder how long they stay in your system for...? It's always frustrating to miss a precious month of trying though! But worth it if it helps the cause! X

@KittyKatSmile I've now fallen down a wormhole googling 'tomato paste for fertility' after what you said!! Is it just for women or seems like it's great for men's swimmers too??

@WeeGi I think it should be safe, someone on here took it just before their FET with success but I’ll be taking it in October as I’m taking that cycle off from trying. But I get your point about missing a month!

@kdd1980 great idea, don’t tell him anything about ovulation, opk etc, just let him think it’s spontaneous. I had to stop telling my dh it’s “go time” because he did not find it sexy! But he knows damn well what I’m doing he just doesn’t want to hear it lol

@kdd1980 it put so much pressure on both parties I think, my partner hates having to 'time' things too and I think the pressure can affect their performance. I get so angry too if we miss an opportunity so totally get where you're coming from.
@WeeGi I know, I'm just not ready to give up yet but it is scary. I'm not even convinced the meds will work for me as my NK cells weren't even high - and I do worry about taking steroids.
@EmsIMO yes tomato paste is especially good for sperm, it's full of lycopene 😊

@EmsIMO thank goodness @Eeviee answered your question. I used a sperm donor so I have no idea on that side of things.....! Happy worm holing!!

@WeeGi the half life of doxycycline is 18 hours. It takes about 5 days for it to leave your body. So if you wanted to be on the safe side make sure you finish before ovulation. It takes on average about 6-12 days for implantation to take place after fertilisation. So it will be out of your system before implantation.

Thanks @Eeviee X (adding to the long list that husband takes already!)

@KittyKatSmile :) x

@Wewin great info, thanks very much. I dont ov until day 23 anyway so that'll be fine then.

@Eeviee just wondering- why is the doc giving you steroids anyway even though your tests showed no high NK Cells? Did he say what good they would do if that's the case? X

@EmsIMO The nutritionist also recommended that DH drink beetroot juice, pomegranate juice and eat lots of nuts. The same rule for protein applies for sperm as well as eggs.

I can't remember the measurements, but all the juices and tomato purée really helped DH's sperm!

@EmsIMO I'm taking a million and 1 supplements but my OH is reluctant and constantly forgets to take the few things I've asked him to take! I'm a nutritionist and diet and getting the right nutrients plays a huge role in egg and sperm health for sure😊

@WeeGi well I didn't have high NK numbers, but cytotoxicity was slightly high (which is how your NK cells respond in a state of pregnancy). So that's why I'm on meds, although he did say my results weren't that bad. I know it sounds stupid but I almost wanted NK cells to be high as may explain losses and then chance of meds would make a difference. 😢 But will just have to see.

Hello everyone, Please allow me to join this thread - I have a very lovely 6 year old boy and have had 3 early miscarriages while trying for the second time. No issues or complications with the first pregnancy or at the time of conceiving. I am seeing Dr Shehata and am about to start on pred this cycle when I ovulate. Day 9 of my cycle today and I usually ovulate between 10th and 15th day - going to call the nurse today to check when exactly I should start the pred? Does it have to be on the exact day of ovulation or when your fertile period starts. I know someone on the thread has already mentioned that it should be the exact day of ovulation.

@ginandtonicformeplease That's really useful, thank you - he takes nuts and the Impryl recommended but I'll add Beet juice etc the list! X

Ha @Eeviee that must be so annoying! Yep I take roughly 7 or so supplements I think! X

Hi @PGJV You take Pred from Ovulation but it doesn't matter if you're a day or two out, providing you start around the time you think it's happened. I use an Ovusense monitor which pretty much pinpoints Ovulation for me, which helps a lot - I usually start taking Pred a day or so once I know it's happened. Good luck X

Hello everyone and welcome to the new ladies! I have been quiet lately but only because I am traveling with work and I am out of the country. I have a quick question and I would really appreciate your views.

As you may remember, my GP sent me to the wrong clinic after waiting for 4 months. I made a fuss and I have just received the new letter from the hospital and they have sent me to St Mary’s Gynaecology clinic under Dr Quinn. Does anyone know whether this is the correct clinic for recurrent miscarriages?! I thought the recurrent miscarriage clinic at St Mary’s was under Dr Reagan but my info may be out of date.

Thanks a million!

@MrsMargot still lurking on here.

I was under St Mary's recurrent miscarriage and the one you mentioned about doesn't sound right.

If you look under national miscarriage on the link below. I printed this out and took to the GP. Hope this helps.

www.tommys.org/our-organisation/help-and-support/clinical-trials

@MrsMargot well done in getting the appointment so quickly again. I don’t know but I looked online and Regan is the consultant and no mention of Quenby at this clinic unless as you say she is newly assigned there. Seems strange though, but hope it doesn’t mean another error.

Just spent the night in hospital with my little boy, who had a seizure but it wasn’t serious, he is absolutely fine. There were a lot of new born babies crying on that ward all night. Hasn’t put me off though!