Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

Thank you girls! 😘 I'll definitely drop Dr S's office an email and ring on Monday. That's interesting, @Rebecca9876, that you had another intrallipid so soon after the ovulation one - I'm also on the complex plan so I imagine I'll be the same. One thing that worries me is that my plan doesn't include any steroids after positive pregnancy test. It's just hydroxy, aspirin and intralipids. Perhaps he feels I don't need it after the Humira lowered my levels so dramatically? Felt sure he'd stick me on steroids in pregnancy though. @Hazlet2 I hope you also had implantation bleeding! I definitely had more spotting than I've had in previous pregnancies, so I think each time is different. @VenusStarr When's your test day? I have everything crossed for you!

Next Friday is 10dpo @Everhopeful35 🤞 my plan is the same, not predisolone if I get a bfp, just sticking with intralipids, aspirin and hydroxy. Aw, I'm excited for you, good you've got a plan for Monday. Need to keep myself busy...

I hope you have had implantation bleeding @Hazlet2 🤞 will you be testing? Xx

@Everhopeful35 I would just check your plan under what to do at the time of a positive test. I’ve just checked mine again and it says to call and book intralipids ideally within 4 days of the positive but can be up to 7 x

I am on the same plan as you @Everhopeful35 and I had ovulation intralipids and then had them two weeks later again. I think the idea is also that you have some scans and intralipids on the same day which saves you a trip every two weeks. As long as you have them every 4 weeks it's fine. I ended up moving mine a week early as my scans and intralipids weren't synced up if that makes sense? Xx

Thanks @KtAgs @Rebecca9876 - I've emailed the clinic and will call them on Monday to get booked in. I'm feeling so anxious at the moment. Six weeks is always where it goes wrong for me and I've just looked at the calendar and realised that's going to be the week before Christmas 😬 It's either going to be a rubbish one or a really great one this year... xx

@Everhopeful35 is this your first pregnancy on Dr S’ plan with all the meds? I would say, if so, that you should focus on that as it isn’t comparable to previous pregnancies where you didn’t have the treatment in place. I’ve found that has helped me anyway xx

@Rebecca9876 Yes, good point! This is my first pregnancy since the Humira and on the hydroxy/intralipids (although I had IVIG drips with my IVF pregnancy). The thing that worries me is that it was only last month that we were told seven of our embryos were abnormal at the end of the second IVF round... I've since spoken to several doctors for second opinions, who say they think it could have been the drugs/stim protocol, but it could also be an egg quality issue. Just praying we have a good egg this time 🙏 xx

@Everhopeful35 there you go - very different to previously! And the egg this time was already good enough to make it this far, implant and start pumping out hcg so fingers crossed. Maybe the superovulation will also have helped, it’s not the same as ivf (not to say it’s better or worse but different).

Have faith although I know how hard it is not to compare back (for example I had a big note marked in my calendar today because 10 weeks four days was when we lost our first baby - I then lost them increasingly earlier in each subsequent pregnancy until we got down to just having a chemical, and think it was because my nk cells got more and more aggressive each time - so a big milestone day for me and am really happy to finally pass it!). So as I say, it’s hard not to compare back but it IS different this time and just try to remember that. Such happy news and what a lovely day for you :) x

Gentle congratulations @Everhopeful35, crossing everything for you that all progresses well.
I'm with you on being worried about no pred, it's bc of covid risk. It's meant to have pretty bad side effects so at least you're avoiding that! X

How you doing @Everhopeful35? Hope all is well and you're able to arrange everything you need today!

My period decided to rock up in typical style this grim Monday morn, so false alarm on implantation bleeding. V odd though - can't help thinking the pre-bleeding is a sign of something else. So over it all! I've just emailed Mr S clinic to arrange a first consultation in Jan. I knew I'd end up being impatient and getting an appointment with him in the end. Before that though we're just going to enjoy Christmas and have a break. I'll be drinking allll the mulled wine that's for sure.

Have a good week everyone 💛 x

Lovely news @Everhopeful35
I wasn’t on any steroids either just Hydroxy Intralipids aspirin, you definitely need to get booked at clinic as you need Intralipids 4-5 days after your positive test,
Everything crossed for you ❤️

@Hazlet2 I don’t know if this helps but after a miscarriage in May (and back to back miscarriages before that) I had some weird spotting and slight cramping a few days before my periods in June and July. At the time I hoped it was implantation bleeding but it didn’t turn out to be (which is why I didn’t mention it before as didn’t want to say until you knew).

I wondered at the time if I had had very very early chemicals as the periods that followed were on time but a bit strange (heavier than normal and had v small clots in). But equally it might have been my periods still returning back to normal after my miscarriages, I don’t know.

I took a month off trying in August, had a holiday, drank wine, did yoga, had massages and acupuncture, and started again in Sept when we added pred to my meds and did superovulation and that all worked, with no weird early spotting that time.

I’ve no idea if any of that is helpful and everyone’s experiences are different, but in my case I think that my body (and mind) needed time to “reset” after going through a lot.

Equally bleeding/spotting seems to be fairly normal and not always a sign of anything in particular so although I know you are going to worry and wonder, it may just be one of those things? I would say enjoy Christmas, drink mulled wine (so jealous!), maybe try to do a couple of relaxing things for body/mind like baths, yoga, massages etc (if annoying Covid rules allow!) and see what happens in 2021 (it’s got to be better than 2020 right?)! Xx

@Everhopeful35 Congratulations! As others have said, you are on a different plan now so hopefully this means a different outcome for you. Completely natural to feel anxious though. Hopefully Christmas helps to distract your worry.

@Rebecca9876 I had bleeding like what you mentioned a couple of years ago and i was found to have high prolactin levels which was messing with my fertility, and has also been found to be a reason for miscarriages, although this is also disputed by some so who knows. Might be worth checking - a simple blood test which your GP can do - if it continues.

I did a podcast recently for Rainbow Running Club and spoke about my journey with recurrent miscarriages and Dr S (although I don’t mention his name as wasn’t sure if I was allowed to!!) in case anyone wants to listen as I talk about natural killer cells and the different treatment for it. It’s the most recent episode and my name is Laura (NICK7nick7 was meant to be my password on her but I accidentally made it my username instead 😂). It’s on Apple, Spotify, etc.

Thanks @NICK7nick7 but that pre period spotting thankfully stopped in Sept (when I feel pregnant; my more recent bleeding during pregnancy seems to have been the hematoma I had). I was just outlining what happened with me over the summer in terms of pre-period spotting in case useful to @Hazlet2 who had asked about it - maybe what you had is another possible cause for her to look into.

How brilliant that you’ve done that, it’s so good to share information for others going through this. Will take a look! X

@Rebecca9876 oops sorry, tagged the wrong person! That was meant for @Hazlet2

Oh no worries @NICK7nick7! x

Thanks for all the lovely messages ladies. I went into the clinic for an intralipid today and they have booked my scan for 6.5 weeks, which will be the 22nd... three days before Christmas 😩 Being there today made me feel very anxious. It made it seem a bit more real. I'm happy to be pregnant but so petrified it's going to go wrong again. But every chance is a chance, I guess. @Rebecca9876 I'm so pleased you've made it past your 10 weeks 4 days milestone - amazing! Is your next scan 12 weeks now? @Hazlet2 I'm sorry it wasn't implantation bleeding 😔 But don't panic - sometimes you can just have a weird cycle. Back in February I randomly had one period where I spotted for an entire week before my period came. It was so cruel because I thought it was implantation. My doctor at the time, at St Mary's, said that it could have been due to a progesterone dip. So all the more reason to visit Dr S - he'll get you on cyclogest and that will ensure you always have the right level. Enjoy your Christmas and yes, you definitely should drink all the mulled wine!!! xx

@Everhopeful35 yes 12 week scans next week (NHS and the Professor at the clinic, not ideal but have to have both). Am nervous but trying not to think about it too much.

I don’t think the fear ever fully goes away for women who have been through what we’ve been through, but just try to take it a day at a time. I found having mini milestones has helped me - there’s a verywell article called 13 milestones for pregnancy after miscarriage that gives a nice little list or you could make up your own. I also used the clearblue how many weeks tests to check my hcg levels were going up at the start - could be something to think about if it might give some comfort (but don’t become obsessive like me and do it every day worrying about them dropping - if you’re like that then avoid, it did me no good at all!).

And just relax and enjoy it. I think it’s so easy for women in our situation to live in fear - and perhaps it makes sense to be prepared for the worst - but you can enjoy it too. My husband and I used a fun app called BabyName which is like online dating - you each swipe yes or no to names and then it matches ones you both like. It might seem early to do things like that, but we both enjoyed it to have something to look forward too, in addition to the worrying ;) xx

@NICK7nick7 Great, I will definitely have a listen, thanks :)

@Everhopeful35 I hope some of the christmas build up can distract you a little. I know every day at the start feels like a month 😔

@Everhopeful35 congratulations stay positive 😊
@Hazlet2 rubbish that it was your period but hopefully it's just an off month and hopefully next month if you try progesterone that might help 😊

With the clinic being shut 24th dec - 4th Jan, does anyone know what happens if we need them during this period? If I get pregnant this cycle then I would need 6 week intralipids and scan during this period and was thinking that others must be in a similar situation.

Thanks ladies - much appreciated. As well as drinking all the booze, you're right - need to focus on relaxing before a new year, which yes, HAS to be better than this one (it's not much to ask is it). Husband is def up for drinking cocktails and having a little spa break. Fingers crossed covid permitting!

@Rebecca9876 thank you for the very helpful advice, it could well be just one of those things. my last miscarriage was in April so could still be getting back to normal or just a blip. It seems such a cruel trick when all you're thinking about is ttc!! I'm looking forward to seeing Mr S in the new year and feeling confident that everything is being thoroughly checked and I can finally be on the meds that will make me feel like I'm doing something about it all. Even that surely will help mentally. I like the idea of the baby name app ☺️

@NICK7nick7 well done for sharing your story - will have a listen now! I really admire people like you and binge listen to all these podcasts, it helps so many of us 👏

@Everhopeful35 so glad you've got next steps sorted, and like everyone is saying - this is a new plan, so try and focus on that as much as poss
Xx

@NICK7nick7 they are scheduling appointments so that those who are pregnant are seen but just changing the dates of appointments to fit around the closed period. So for example I’m having my intralipids early before they close (it’s fine to have them a bit early just not late, so no later than the standard four week intervals) and I won’t have my normal 16 week scan but a 14 week scan and then another one some time when Dr S is back in January. Not ideal but they need a break - Dr S didn’t have a holiday or break at all this year and with his NHS practice on top is really tired.

If you fall pregnant I’m sure they will do the same for you x

That's great about the podcast @NICK7nick7 I will give it a listen :)

Glad you've been in today @Everhopeful35, first step done. I agree with @Rebecca9876 pregnancy after loss is so scary but I did enjoy my last pregnancy, despite it not having a happy ending. I got stuck in my grief after my second and I think that was partly because I never allowed myself to connect or enjoy it.

If I'm pregnant my 6 week scan would be due around 27 Dec so good to know they'd be flexible.
My roseaca has flared up tonight, 6dpo. Not sure if it means the meds aren't working or if I'm just overthinking (quite possibly!)

Cyclogest effects kicked in this morning.... Wide awake at 3.30 after a few vivid but mundane dreams.

Has anyone who's pregnant tested at 10dpo and not got a positive, but got one a day or so later? In my last pregnancy I did test at 10dpo and there was the faintest of lines but not one I was confident in. But 12dpo it was obvious. Just wondering really.