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

@fnej01 and @Wewin thank you very much! I know right? I called the clinic just now and they said that according to my NHS record I am referred to the Recurrent Miscarriage clinic and I should not worry about it... I looked online for Dr Quinn and it seems that recurrent miscarriage is one of his special interests.. www.imperial.nhs.uk/consultant-directory/stephen-quinn

What shall I do? Shall I call again? I should have asked why is Dr Quinn and not Dr Reagan...

@wewin it is not that quickly (appointment in December) but at least the letter came quickly and I know what to expect. I am still seeing Dr S next month but I would like to be in the system if everything goes pear shaped that end....

@MrsMargot sorry I got the name wrong - it’s Quinn I see. If it were me I’d leave it, [but I’m a bit too laid back sometimes]. Quinn is probably one of the other consultants/doctors working alongside Reagan. But if you’re going to stress/worry definitely call to clarify to ease your mind.

I hope your appointment with Mr S goes well.

I will hopefully get my review RMC appointment in a month. Still haven’t decided if going to let DH near me this month. I think I’m a bit worried by the thought of another cp and an intensive 2ww. Also, thoughts that I’m too old are starting to creep in (thanks to friend & my mother).

I’ve really enjoyed zero temping and zero OPK’s this month. I’ve largely put baby making out of my mind which I’ve really needed. I’d say, if I’m not properly pg with an actual baby in uteru 6 weeks+ by Christmas, that’s me done.

@MrsMargot if you rang the clinic and they said it's ok I wouldn't worry. The admin team there have always been very organised there in my experience. I have never seen Prof Regan there but have seen multiple members of her team at all levels that were great. I haven't heard of Dr Quinn but that might just be coincidence. I am currently 14 weeks pregnant after 4 consecutive losses prior to this and the care I have received from St Mary's through diagnosis and my first trimester has been exceptional. I hope it all works out for you

Hi ladies, just checking in ☺️

Well AF arrived for me on Tuesday, only 6 days later than usual - how wonderful! - so I spent the entire time torturing myself with HPT’s 😩 I swear at 9dpo I saw a vvf line but then it seemed to disappear the next day so I convinced myself I was seeing things 🙈 it’s very strange for me for AF to be late though so who knows what happened this month!

Counting down the days until I’m on holiday now... definitely in need of a break & some time to reset/ clear my head ☺️

I hope everyone is doing okay, we got this!! Xxxx

I hope this is ok to cut & paste from a journal article (please delete if not MN). It relates to RIF and this bit I’ve excerpted is about infection. As there’s been some discussion about this in recent days, I thought I’d share.

I will provide the link here: rbej.biomedcentral.com/articles/10.1186/s12958-018-0414-2

Infection
Many women who have experienced RIF have also been determined to have chronic endometritis (CE) from bacterial colonization, often with minimal or no clinical signs of infection...

In some cases, it is not necessarily chronic infection that leads to decreased implantation rates, but rather the constituents of bacterial flora present in the endometrium...

While it was once thought that the endometrium was a sterile environment, it has now been accepted that Lactobacillus colonize this region in addition to the vagina. In a recent study, Moreno et al. demonstrated that women with Lactobacillus dominated endometrium undergoing IVF have been shown to achieve higher rates of successful implantation (60.7% vs. 23.1%) and live birth (58.8% vs. 6.75%) rates compared to those with non-Lactobacillus dominated endometrium...

Goes off to get some Lactobacillus

@Weein that's an interesting read, thanks for posting it. The antibiotics would likely wipe out all of that so that's really useful info about the Lactobacillus. Had a look and there seems to be some good supplements out there. Xx

@WeeGi your welcome. I picked up some oral intimate probiotics today and have ordered lactobacillus gasseri to apply topically with coconut oil.

@Wishing5tar same thing happened to me last month. V faint line 9-12dpo which faded out. Drove me up the wall as I felt so pregnant. I had morning sickness and my sense of smell was different. I couldn’t understand why the line didn’t appear. I read last night about a ghcg which is the early hcg in early pregnancy but a lot of the hpts don’t pick it up. It was either that causing my symptoms or early pregnancy factor (epf). But I thought it was very mean of my body to tease me like that!

Hope you enjoy your little down time. I’m debating about whether to give this month a miss or not...

@Wewin so annoying isn’t it! 😏 I was literally a woman on the edge wondering if I was or wasn’t. And then you start overthinking... well if I’m X dpo then surely the HCG should be high enough to be picked up on a HPT. And if it’s not, clearly somethings wrong and it’ll end in miscarriage anyway blah blah blah 😩🙈

I’ve just been re-reading over the posts about infections in the womb and the dioxycycline - super interesting & something I think I’d try. You said you take 100mg twice daily for 14 days - is that morning & night? Would the first day need to be day 1 of AF as to avoid taking it over ovulation/implantation? Is it a once and done kinda thing or would you take it each month? Sorry for all the questions 🙈

Also what is the name of the probiotics you’ve ordered? I found one called Optibac that looks good ☺️

@KittyKatSmile I also have a question about tomato purée 😂 how big is the spoonful? Are we talking teaspoon or tablespoon? Were you eating it straight up or making it more pleasant some how?
How’re you doing anyway? How many weeks are you now? Are you showing a bump? 😍 xx

@Wishing5tar yes I take 100mg morning and night for 14 days - one month only. From CD1 if you can. So that they are done before you ovulate. Although I’ve read studies where women took them 1 week pre-transfer and 1 week post-transfer and there were no safety concerns raised there. But to be absolutely on the safe side, I’d do from CD1 or there abouts.

I also purchased the optibacs intimate range, they look really good. After I finish my antibiotics I will take them but they probably won’t get a chance to colonise this month. So that’s why I’m thinking there’s little chance this month of a sticking BFP.

I take a tablespoon of tomato purée. It’s so nice, I actually like it. Is that weird? I’ve been adding it on the side of my dinner, like ketchup!

@Chickjen I’ve been wanting to ask you and the other ladies who are pg right now...

• what protocol were you on for your positive sticking cycle?
• Did you have any chemicals or early losses previous whilst on this protocol?
• how many cycles did it take to get your sticking pg on the protocol that worked for you?
• any ladies try deoxycycline and get their sticking BFP the cycles after?

Thanks in advance!

Thanks @Wewin that’s really helpful. Did you order the doxcy via the Superdrug online pharmacy? There’s two - one for chlamydia and one for malaria, is it the malaria one I need? I’m already on hydroxy that’s a anti-malaria too - will it be doing the same thing or are they different?

Good idea about putting the tomato purée on the side of dinner ☺️ I’ll try that from today!

@Wewin a bit of a long story from me. ☺️ My protocol was in 2 steps. First I needed to take humira to bring down TNF cells (which make implantation difficult and chemicals more likely) but it is expensive and hard to find and before taking it I got a bfp. So I started the pred and had intralipids but tests started to fade soon after and started bleeding at 5 weeks.
Then I took the humira and was retested for TNF cells which was a success and they were down into normal range. It was around 2 days after O I got the results so I started pred straight away and got another bfp that month but the test lines never really progressed, so I didn't go for intralipids and started bleeding a few days after AF was due. I was pretty miffed after spending 1k on humira and things had actually got worse! But it was enough to persuade DH to do the sperm test at least, although his test date happened to fall around O time so we missed the next month.
So the next month I started pred the day after O ( I was tracking by temp so the day of the temp rise) and here I am! Still not convinced I can be so lucky and another scan on weds 🤞

@Wishing5tar what torture 😡 I'm sure our bodies make new problems just to play with our minds 😥 I hope your holiday is just the thing to clear your mind and bring you luck when you get home ❤️ And yes @KittyKatSmile we need an update please!

@ginandtonicformeplease when do you get your results?

@Wewin I had around a tablespoon of tomato purée and always had it on a cracker. I can recommend Sainsbury's rosemary crackers (in fact I might go and have one now).

Regarding protocol I feel it's hard to say in my case because I went from trying naturally with my partner to IVF with a donor so there are a lot of variables. I lost once whilst on the pred, although I should caveat that with the fact that I didn't follow Mr S's instructions to the letter that time; I generally found it took me longer to conceive on the pred as well.

I'm 17 weeks now, feeling well apart from lingering bastard headaches which I have most days. Definitely showing now, although some people are still surprised when I mention it and must just think I've been eating a lot of pies (I'm naturally pretty tiny so it would have been a LOT of pies!)

@Chickjen still so happy for you and fingers crossed for next scan. It does get easier, honestly.

Thank you both @Chickjen and @KittyKatSmile. It’s always good for me to hear what’s worked for people. I was surprised for me that I got such a very weak chemical pregnancy last month on the pred for the first time. But maybe it just takes a few cycles for your body to get used to it.

@Chickjen I’m so glad the humira got your tnf down and so far so good. I won’t be getting any of that tested so if that is my issue then I’ve no chance but I’ll give it a few more goes.

@kittkat likewise so pleased you’re pg and doing well sporting a little bump. You must be made up but so sorry to hear about your headaches and hope they pass soon.

For review purposes I’m on pred 15mg every day as well as baby aspirin, ubiquinol 600mg, prenatal, folate 5mg, pregnenolone 10mg, B3 megadose (NAD), fish oil, vitamin c powder a few times a day, pomegranate juice, raspberry leaf tea etc etc Nearly finished deoxycycline 100mg morning and night for 14 days (suspected endometritis). Now optibacs (intimate probiotic for women), lactobacillus gasseri too.
Searching for that elusive unique magic formula for me as we are all different. Rather than take progesterone all luteal phase, just going to take it at BFP. I seem to have more success that way(?).

TMI: have had a lot of ewcm this cycle (either vit c or deoxycycline).

@Wishing5tar I ordered the malaria one as you get more in them. I believe the clamidya one they just give you 100mg once daily for 14 days and I took 100mg twice daily for 14 days.

@Wewin I’m also conflicted and it’s so annoying because it’s just a month wait but it feels like an entire year. I wanted to use October to get back on all my vitamins and try the antibiotics but November just sounds so far away! I also calculated when I may ovulate in November and it’s very close to when I may be on a trip and away from DH so I’m not sure if we’ll even have a chance that month. It would also mean to stay clear of DH in October as I would probably get pregnant if we did the deed without tracking etc, which is not good for us ladies that need to start our medication within a certain period. I think I’ll just let my cycle determines whether I miss October or not once it starts.

Do we need to give the tomato purée some time to work before trying though? I’ll probably have to do this myself as DH suffers from bad acid reflux and wouldn’t be able to do it too often.

@Chickjen good luck on Wednesday, everything will be perfect!

@zoe16 I wouldn't let the tomato purée hold things up to be honest. It's just another thing that helps (I think with egg quality) so it's a good thing to try for some control over the whole process. How is your AMH, do you know? Mine is fairly low so I wanted to ensure the eggs I did have would be of good quality if I could...

Yes @Chickjen will be thinking of you.

@zoe16 ikwym missing a month seems counterproductive. I’m not tracking anymore but have become very aware of ovulation signs. I’m not due to ovulate until Tuesday but I’d bet money that it’s today. I think the vit c has brought on earlier ovulation.

Ladies, I’ve just been researching vit c and I think I’ve made a booby. I heard it can help with all sorts including building womb lining and implantation. Last month I took it FROM ovulation and I read today that it acts as a CONTRACEPTIVE in that it creates a hostile environment for egg implantation plus it lowers progesterone. So I’m promptly stopping it today before ovulation.

I just wanted to flag this up in case someone takes it and didn’t know.

@KittyKatSmile My AMH results from last summer were really good so I don’t think I need to repeat that anytime soon. Perhaps next year if no success.

@Wewin It’s weird I too had a lot of ovulation signs and could pinpoint ovulation day but for the past few months none really, just ewcm for several days. If I don’t track I miss it! Thanks for the tip about vit c I read something similar about it a few weeks ago and decided to stop it altogether.

Did anyone have symptoms of immune issues before being diagnosed? After my mmc in January I started having really bad skin allergies. I took medication and it helped but my skin allergies came back in May and the medication stopped working. When I got pregnant in August I noticed my skin allergies cleared up but since miscarrying last week it’s flaring up again. I brought this up to my doctor and and he brushed it off but I’m convinced it’s related especially since I’ve been diagnosed with high NK. I’m allergic to dogs and I have two but I can’t give them up, I’ve had them for 10 years and no issues until now.

@Wewin any reason you’re taking prenatal and 5mg folate? And what does pregnenolone do? Will you up your pred dose once you get your bfp?

Hi gang, question about the first response tests here. I’m slightly going out of my mind. As I had absolutely no spotting this month (which has never happened apart from the second time I was pregnant) I took a first response test on Friday. There was a very faint second line so I contacted the clinic and they’ve booked me for intralipids early this week. But yesterday I tested again and the line was even lighter and today is really barely there. I’m 15 dpo and I’ve kept taking the pred etc but I’m not sure what to do. What has been your experience of the first response tests? I’m worried that I’m dragging out a chemical. Should I keep testing and taking pred for now but be ready to cancel the intralipids appointment? I remember @DaniMERLI I think going through something like this? Any advice very much welcome! X

Hi @Belarita I don't really know what to suggest. The best way to tell if it's progressing or not is through blood tests 48 hours apart but that doesn't really help with your immediate question/concerns. I think you're right that it was @DaniMERL who went through the same. Hindsight is such a wonderful thing. I'd probably defer the intralipids until Wed or Thurs if you can to give you more clarity. There is still a big question mark over their use anyway (my clinic messed up and I missed one dose, albeit that I'd had one before my transfer, and I'm now 17 weeks) and the steroids are the most important thing.

I'm not sure if this helps but wanted you to know i was considering your dilemma. Fingers crossed for you x

@Belarita in my experience with FRER’s they are a good indicator of hcg levels. I’ve had 4 chemicals. They truly suck, I’m so sorry and hope for a miracle for you. Miracles can and do happen.

@zoe16 I have autoimmune symptoms which manifest through a condition which affects my autonomic nervous system (heart rate/blood pressure).

The folate is bc I don’t tolerate folic acid very well and possibly have metabolic difficulties converting it to folate. Folate has been shown to reduce mc with baby aspirin & progesterone combined. Pregnenolone is bc I couldn’t get DHEA in the U.K. Pregnenolone is the precursor for DHEA so I got that as an alternative. Yes I will up my prednisone to 20-25mg when/if get a BFP.

Hello All.

Firstly thank you for this wonderful thread. I'm finding this a very valuable source of information. Our story is that we've been trying to conceive for 2 years and in that time experienced 4 losses from 4-5.5 weeks. All tests via NHS have come back fine and recently seen Dr S who has discovered that although I have normal NK cells levels they are very aggressive so has recommended the complex treatment plan which I hope to start end of October. Just to say the the TNF a results have yet to come back so may or may not need Humira.

My concern leaving his office is that he didn't seem confident in his protocol treating people with chemical pregnancies. Has anyone with recurrent chemical pregnancies been successful on this protocol?

Secondly i have also had a pain in the left groin area since we started ttc. No one seems to know what it is or believe that it's linked to these losses which does concern me. I have had a laparoscopy for endometriosis and found very mild levels which were removed but nothing in that region. I wonder if going on a course of antibiotics will help with this and if there are any risks self prescribing this... any thoughts? Apologies if this has already been answered.

Thanks so much

@Belarita sorry I have been so busy, mainly at hospital appointments. This may be too late but I had 2 failed pregnancies on the programme before this success and I got really annoyed at paying for the wasted intralipids so early each time. The second time I went on day 11 or 12 and the test line had faded by 13 and then disappeared.
So with this successful pregnancy I waited at least a week after my positive (which I only got at about 13dpo as I had my dates mixed up and hadn’t tested). They tried to scare me into going but I just said I was away. Clearly it didn’t affect things detrimentally. I suppose I was fairly convinced that the pregnancy would fail like the others so it felt a waste of money and time to rush to Epsom! i didn’t stop the steroids until it was a complete negative line though.

So I have just scanned through the last 7 pages but can’t keep up!

I’m now 28 weeks tomorrow After being on the complex Mr S plan with steroids and hydroxy. Happy to answer questions but may be best to tag me so I get a notification.

You may remember I mentioned the baby has a problem in his tummy, spotted by Professor A at an optional 20 week scan in Epsom. I have now been referred to Oxford. The baby will be delivered there at 39 weeks, all being well. They will then operate within a day or two and he will be in neonatal for 3 weeks recovering. This will take us right over xmas and new year! It’s been quite difficult but we are getting through it. Can’t really believe our luck after the journey we have been on but I do still feel so fortunate to have even had success.

@Wewin I’m taking a prenatal that already has 1mg folate. Can I add more folate supplements like another 1-5mg?

@Ultra496 welcome I do believe some of the ladies on here had multiple chemicals and had success on his protocol so there is hope! Myself and a few others are on/will be taking self medicating antibiotics so unless you have an allergy or medical problem that would prevent your from taking you should be fine.

Thanks so much @KittyKatSmile @Wewin and @DaniMERL for getting back to me so quickly. I think your advice is spot on and its really so helpful to have your experience and perspective on this. Your support means a lot on what has been a difficult weekend. I’m going to take another FRER tomorrow and almost certainly cancel the intralipids appointment. When the line goes completely I’ll come off the pred. If it stays ambiguous I might wait a couple of days and then take a conventional clear blue. I do find an unequivocal Pregnant/Not Pregnant easier to deal with strangely. Huge thanks again and great to hear about your plans for the Birth @DaniMERL. I hope that knowing the plan is alleviating a small amount of anxiety for you. I can’t imagine how hard it must be to absorb all that. You’re very courageous and I hope everything goes perfectly. X