Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

Thanks @KittyKatSmile it's awful isn't it. I think I will fight to come off at 12weeks unless they can give a good reason why. Hope that your pregnancy is progressing well x

@fnej01 also 12 weeks and then weaning by 5mg every 4 days.
However I was still on the Hydroxy until 16 weeks so still on some form of immune suppressant

@DaniMERL that's helpful to see your weaning schedule. That will still take so long! But glad to be starting the process at least! How are you feeling?

Hey all has the superovulation worked for anyone ovulating on their own? That’s our next step dr s first plan hasn’t worked so fed up and down with it all.

I don’t know why I’m not getting pregnant.

I have a referral for a hsg locally thinking of getting it as it worked last time although ended in mmc.

Dr s said as that one was clear there was no need, but I’m thinking the last mc has blocked tubes.

Surely it can’t be a coincidence that after 6 months of trying I get pregnant 1 week after hsg?

There’s no point all this travel and expense and pumping crap into me if there are blockages.

Felt terrible last few days really bad expecting AF today

@summertimehere I have had 2 spells where I couldn't conceive, although both before DrS. The first time was when we first started trying, I noticed my cycles were getting shorter and lots of PMS when normally I wouldn't get any, after 8 months I went to the GP who reluctantly did some tests and found my thyroid was out of range, once I started thyroxine I conceived the very next month. I'm sure you already have had thyroid tested but might it be worth retesting? It can fluctuate and I've noticed some of the pred/omeprazole mentions not to take with thyroid conditions, they might have affected it?
The second time was after medical management for a MMC do I don't know if that was a factor, but it lasted for 6 months and really was hell so I really feel for you. Somehow knowing you have conceived before but can't now made it all the more worse. I did notice at that time though, that the harder we tried, more sex and trying to time round O, the less success there seemed to be. Now we just DTD every other day from the end of AF till as long after O as we can be bothered and it's been working nearly every time. I think too much sex is not good for sperm health (in my case anyway).
Anything your OH can do? Fertility supplements? Cut down alcohol? No hot showers?
If you can bear the invasion of a hsg and there are no risks associated then maybe go for it if it will help you at least feel you are doing all you can.
Keep going 🍀

I'm still wondering whether DH and I should just give up. For the first time since we started the IVF journey we had a massive argument and I told him to call the clinic and tell them to dump our embryos

It was all about the cost of the bloody humira as well. Adding up the costs of IVF and miscarriage investigations, we've probably spent well over 20k: it keeps going round and round in my head what the doctor said to me about PGS testing the embryos, and wondering if we should do that as well as using humira. Of course, slight problem that we don't have the money to do both - if we did the PGS we wouldn't be able to afford a FET and have the NK cells treatment so it would be a bit pointless! Plus there's also the fact that the same doctor told us when we began the IVF that PGS testing was a waste of money.

@ginandtonicformeplease it sounds like you need a break. I don't mean stopping or postponing but just something to take your mind off this for a bit. Can you do something this weekend? Go out for the day somewhere random and completely unrelated? Even better make DH organise it and surprise you. You have such a lot on your plate at the moment no wonder it's getting on top of you. We went with work to Woburn safari a couple of weeks ago, I was really sceptical at first but I must say by the end of the day i really felt it had done some good to just get away for a few hours.
I assume DH is not helping with these decisions? 😡

Hi all, I hope you are all having a good week!

Just a quick question. We are on holiday with the in laws for 10 days. Sleeping in pretty close proximity and sharing a bed with our 4yo.

Obviously not a great recipe for baby making! I'm due to ovulate any day now so it's looking like this month is a write off.

Should I still take the 10 days of Pred and progesterone as per Dr S plan or can I skip a month of it? He's got me on 5 months of it to see how I get on?

What would you do?

@kdd1980 is there no chance your inlaws could take the little one out for an ice cream? Grandparent bonding time? Or you and DH go out for a moonlit walk?
It is possible for sperm to live for 5 days, if you are certain there is no chance personally I would take the month off, but there could be an argument for taking the pred so it builds up in your system (I don't know if this true but I think Ive read it on this thread before) depends if you get side effects and if they would spoil your holiday? I hope you are having a nice time 😀

@kdd1980 personally I would take the month off if there is absolutely no way, but I would say you could find a way (also I think my brother was conceived on a holiday to romantic Bournemouth and I'm sure I would have been in the room. Aged 4. Take the challenge....!) I hated the pred come down and I was also sure it stopped me from conceiving so I'd take any excuse. Also I think Dr S recommends a break after a certain amount of time so you could just enforce that yourself....

Good lord. Day one of tapering off the roids and I caught sight of myself in the brightly lit mirrors of the gym changing rooms..... I look like a werewolf! Seriously I've got dark down all round my jawline!! The horrors. @DaniMERL please reassure me!

Hi I'd like to say hello 👋 I keep losing my babies and ppl tend to say the wrong thing to me like "relax" and "take a break". I get it though, I'd probably say something insensitive like that too before I ended up here. I've had 4 consecutive losses. At my 3rd, my D&C revealed high CD57 killer cells. So no amount of relaxing is going to change that. I am not under the care of anyone yet. I have not been officially diagnosed yet. So we are trying one last time then hopefully will get our appointment through. I'm really scared of another chemical/mmc. I've been pg in April, May, June/July and again last week or so had another chemical. I'm 43 and I know egg quality is an issue too. But to lose 4 pregnancies in a row is more than bad luck.

Hi @Wewin, I'm so sorry to hear you've been going through this. My heart goes out to you. All of us on this thread understand how sad and gruelling these losses are. And it's often hard to make people understand. Very often people start giving me advice related to TTC and I repeatedly have to explain that its not getting pregnant that's the problem, it's keeping the pregnancy. A lot of us here are with Mr Shehata at the Centre for Reproductive Immunology and Pregnancy, some with Zita West Clinic and some with Dr Siobhan Quenby in Coventry. My DH and I went with Mr Shehata and part of our decision to go private was because we too are over 40 and we didn't feel like we had a lot of time on our side. The testing is expensive but very comprehensive and will give you answers on everything from what your profile is in terms of NK cells to ovarian reserve and your partner's sperm DNA (thought to be a very important factor in miscarriage that tends to be overlooked). I don't know how far you've got into researching Reproductive Immunology. It's quite a contested area of fertility medicine but does have some extraordinary results. This thread will give you a good idea of what the ups and downs are of the process and we are here for any and all questions. x

@Wewin, echo what @Belarita has just set out very comprehensively. I am another Dr Shehata alumna, although am currently with Zita West as I need help both with getting and staying pregnant, not because I'm infertile per se but because I'm single. I have also had 4 miscarriages in the last year and today I'm 12 weeks pregnant. Stick with it. You've got us now (I seriously wouldn't have got through it without these ladies. Found them the week I was having my last miscarriage and they saved me).

Thanks @Belarita it feels good to talk to you as you get it. All you ladies do. I've got the details for Dr Quenby's clinic and have to ring them when get my positive ovulation test. But we are going to try one more time this month. I know we are taking a big risk.

I've been sat in tears today as really feel the door is closing in my face. I think I'm having to come to terms with losses and no more babies.

I know the clinic is there but I don't know if I'm strong enough to keep going. Maybe I'm just having a down day. We Iive in Northern Ireland so it won't be easy getting assessed/diagnosed and treated.

Thank you so much for listening.

oh @Wewin, its so painful. First and foremost do whatever you need to do to look after yourself today and the coming weeks and cry as much as you need to.

I'm a little unclear as to exactly what the path you've been referred for and what they recommend as all the clinics do things a little differently. Is it that you're supposed to book an initial consultation at ovulation and then get over to Coventry soon after?

If so would it be possible to both try this month and move forward with that plan? I imagine that initially they would want to do further tests rather than put you straight on a treatment plan this cycle, or am I wrong?

I also completely understand the urge to let it go and rethink and rebuild in a different way. That may be the right path for some of us ultimately, but I do think you have the possibility of, at the very least, getting a clearer picture of what is happening in order to inform your next move. Whatever you do, take care of yourself.

Yes @Belarita it's Coventry I'd need to go to approx. 7 days past ovulation (Dr Quenby's clinic). During two consecutive cycles I haven't to have unprotected sex. The investigations include a biopsy each month you see. So moving forward would mean putting our ttc plans on hold.

Locally, I'm waiting to be seen by the RMC but not sure how long I'll have to wait to see the consultant. They've taken my bloods and they have the pathology report from my D&C in July (mmc). I know the report said I have high killer CD57 cells. Maybe that'll be enough for the RMC to prescribe pred. I don't know.

I have some autoimmune indicators including a condition called POTS. My cardiologist said he'd be prescribing me prednisone for it. I'm trying to speak to him on phone to try and speed up this treatment.

What's the rush you may ask? I have recurrent depression and off my meds and cannot do that long term. Secondly I'm 43 so there's no time to waste.

That's everything in a nutshell. It's looking pretty hopeless really. Reality is setting in now that my family is complete and won't likely include a new addition.

@KittyKatSmile I just seen your post. I'm so pleased for you, that's really amazing you are at 12 weeks after having 3 mc's. There definitely is hope for those who can continue on their journey. I hope you are feeling well. Is it ok to ask what meds you are on please?

I'm so glad I found this board. Every other board I've been on, I've felt like I don't belong. People are well meaning but at this stage now I'm fed up listening to unwanted irrelevant advice. This experience has taught me a lot about how to communicate with people going through extremely difficult complex situations. Keep my mouth shut and just listen! lol

@KittyKatSmile *4 miscarriages (so sorry)

@Wewin happy to bore you with my drug stories I am on very few effective today but at the start was on 16 (I think) a day! This is an IVF pregnancy so I'm not entirely sure which ones are for my immune condition and which ones are just generally used in IVF but I was on oestrogen tablets and progesterone pessaries, as well as clexane (blood thinner) injections and then the prednisolone as well (20mg and am now tapering. I was on 25mg under Dr Shehata) and something for a slight thyroid condition which my clinic picked up on just before I started this cycle.

I know so very well the feelings of hopelessness and some of these ladies have seen me at very rock bottom (I am also a geriatric mother) but you need to keep on keeping on, at least while there are still options.

We're all here for you and someone usually knows the answer to any question you might have xx

Thank you @KittyKatSmile, truly remarkable what you've been through and all of you have been through. Did you get PGS ivf? I wish you a very healthy pregnancy and birth! Everyone seems to be on prednisone or prednisolone with additional things like hydroxy.

I should be ovulating this week and I so wish my cardiologist would call me back to start me on prednisone. I know it's probably not going to be the holy grail answer, but I'd like to at least try before another loss.

Sorry to be such a drag on proceedings here. I'm normally quite positive but after the last loss nearly 2 weeks ago, I went into a bit of a slump.

@Wewin you're not a drag. We're all here for each other through ups and downs.

I didn't do PGS IVF as I felt fairly confident that my previous miscarriages were down to either my natural killer cells or my partner (miscarriages were with my partner; IVF is with a donor. Just to add to a difficult time!)

Keep going: and hope the cardiologist comes back to you soon x

Thank you @KittyKatSmile. That's so great your intuition was right. You all are an inspiration for me to keep going. Sorry for hogging up the thread. Hope everyone else is doing ok?

@KittyKatSmile hehe, I don’t know if I can. I’m told by some friends who have their rainbows that they lost their extra hair eventually but they aren’t sure when. My face is definitely still hairy but i think I got off okay with the rest of my body. Maybe my belly is a bit hairy but it’s still fair hair.
I’m 22 weeks now. I have a late 20 week scan with the Professor next Weds.

@DaniMERL argh! I thought you said a few weeks ago that your friends had said you were looking better after coming off the drugs?? Please! I'm pinning all my hopes on this! (I'll actually just go and get rid of it cosmetically!!)