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

Hi Ladies,

Not sure if you remember me, but I introduced myself when originally prescribed the pred by Coventry clinic.
Finally got a BFP earlier this week so have started pred, progesterone, heparin and aspirin. Not feeling 100% positive after 4 previous losses, but trying not to drive myself totally mad and to step away from the tests.

Really helpful question @MrsMargot. I have been wondering similar about the lack of sore boobs.

Have also found loads of energy in the morning dwindles during the day, is this also the pred, I have not suffered in previous pregnancies to this extent?

X

@KittyKatSmile I found them a bit useless by email - generally I always call the nurses and speak to them.

I also don't go to them for intralipids as they're so limited in the days and hours they do - I get them to send my prescription to the Independent Nursing Service which is just down the road, open 9-6 six days a week and fifty quid cheaper!

@ginandtonicformeplease thanks, that's helpful. But I really don't feel I should have to be calling up and saying 'so, anything else I should be doing this week?'!! I asked to speak to someone to make a complaint but there was no one there (to your point!) One of the receptionists was very helpful: I wonder if she's maybe used to it...

Congratulations @fnej01, great news and you're welcome @MrsMargot. You'll find this place very helpful like that!

@fnej01 congrats! I’m the same regarding energy levels, wide awake on a morning (no matter what time I’ve gone to bed) but tired on an afternoon/evening and could nap, which definitely isn’t like me.

@MrsMargot Congrats too! My boobs only felt sore from last night (I can remember waking in the night because I rolled on my front & I wasn’t comfortable) and I’m currently 4w+6. Today my boobs feel full/swollen too but normally I get sore boobs 1 week before AF is due so I can’t really say whether it’s different this month or not, sorry!
I have been having brown discharge since Monday now 😩 with the odd bit of spotting. It’s really getting me down & I sobbed my husband when he got home from work today (A day working from home with lots of time to think isn’t great 😞) I guess I just feel drained with worry and feel like 2 weeks for the scan is such a long time.

Whilst I understand the meds help us keep the pregnancy, does anyone think/have experience that the meds can also keep your body thinking it’s pregnant when if you weren’t taking the meds you would have already miscarried? Sorry for my rambles ladies, I’m just worried that the spotting isn’t a good sign, the scan won’t be good news and I’ve just prolonged everything by taking the meds.

I’m thinking of contacting my local EPAC on Monday to see if they’ll run some blood tests to maybe reassure me? The pregnancy tests continue to get darker (the last one was stronger than the control line which has never happened before) but I’m not sure that even means anything anymore! 🤷🏻‍♀️ Xxxx

@Wishing5tar thank you! I had the odd brown discharge too but I am trying to think positive.

Good question about the meds. I have actually asked this to one of my 2 doctors and he said that there is no option for this to happen. He kind of dismissed my question as it was completely ignorant ( 😬 ). I like him but no bedside manner. I am hoping it is true.

@Wishing5tar spotting is incredibly common in early pregnancy, which I think is very cruel. Have you heard of the BFN podcast? It's technically about infertility but also the struggles to have a baby and they've covered a multitude of reasons you can spot and bleed.

You can probably find somewhere to just do private blood tests, although I suppose you would need to sort of have someone to read out the results to you. You could then tell that your HCG was doubling within the right time frames. Another option (although I'm not an obsessive tester) is to use a digital which you should be able to see change 'weeks pregnant' at some point...

@MrsMargot thank you! That does make me feel better ☺️

@KittyKatSmile no I haven’t heard of the podcast hun but I’ll look into it, thanks 😘 I’ve just been and bought some clear blue digital tests so hopefully the weeks will have progressed to at least 2-3 weeks (it was 1-2 weeks last time I tested). If not, I figure it’ll just prepare my expectations for the bloods. I’m quite familiar with the nurse at my local EPAC as I was having my bloods done every 48 hours for 6 weeks after my first miscarriage when my HCG levels painfully decreased soo slowly, so hopefully she’ll be happy to see me 🤞🏽

Thanks @Wishing5tar and @KittyKatSmile, it's nice to not be alone in all the weirdness of early pregnancy x

Thanks so much for the lovely welcome the other week. Just catching up with how everyone is doing. Welcome to @MrsMargot and @fnej01! It's really great to see how everyone is doing on every stage of this crazy journey. Speaking of which @KittyKatSmile, having followed your story on this thread, I also got something in my eye when I read your news. Everything crossed for you and all the ladies in the scary early pregnancy stages.

I'm such a newbie and I'm just about to start on Pred etc any day now. Do you mind if I ask how you all time your ovulation and the day to start taking the drugs? I have a period-tracker app which gives me an idea of my fertile week and ovulation date and I've also used non-digital ovulation tests the last few days, first wee of the morning (the glamour of it all!) I was expecting to get an LH surge detected today but no sign just yet. My cycles do vary: although most are between 27-30 days, I have had the odd 26 and 32 day outlier in the past couple of years. What do you guys tend to do? Do you always wait for an LH surge to start or do you go with your average cycle?

Thanks so much for all being on here. @EmsIMO and @Megan234 I know what you all mean about the thinking positive thing. The mind games of this are something else! I've found myself in the past being negative almost as a way of trying to trick myself into believing I don't really care... and therefore it will happen! Bonkers eh? Also most reassuring to read about others of you having a similar response to Dr S's "unusual" bedside manner. There are times when I need to remind myself that this man is helping me have a baby, not selling me a second hand Audi.
Love and luck to you all! xx

Hey @Belarita! I use an Ovusense device (which is brilliant) and that helps me pinpoint my ovulation pretty much to the day. It's a device worn, cough, internally (!!) and helps me see the classic temperature dip then spike pre and post ovulation. In using it I can work out when I ovulate and usually take the meds the next day. And ha I've done that too re the negative vs positive thinking, I've done and tried IT ALL!! Good luck XX

@Belarita I have giggled at your description of the bedside manner; I've been trying not to comment on it now that I've moved onto pastures new as I don't want to sound like a bitter old cow (I am all of those things!) but yes, we should all focus on the fact that he does incredible work

On your tracking question, I was using Ava, the tracker sold to desperate women who like to pour money after hope It never said anything different to the free app I have (actually what it would do a few times was to have a different O day and would then later adjust itself to be exactly the same as my free tracker). It is called period tracker I think but I've deleted it since starting IVF. Good luck with everything. And thank you so much for following this crazy journey and getting hay fever on my behalf

@KittyKatSmile & @Belarita - I think I might be in the minority that doesn't mind his manner! I think I've sat in front of so many Consultants & Nurses before seeing Mr S, that have said such shit things to me/us (often without realising) About my age, nothing is wrong - just have more sex (!!) and miscarriage comments etc, that I actually like his straight talking :) But I totally get how it can throw some people, he does tell you how it is!

Sorry wasnt online for quite sometime now, takes me some time to come out of all this..Having been taking hydroxy for more than 6 months now (lot of delays due to various reasons to start this cycle) jus to check whether it ll do the trick for me..but ended up with a bfn :-(
@DaniMERL and @Megan234 - thanks for ur kind words..i try to be positive but can never take that fear out of my mind that i might fail this time too after having 7 miscarriages..
@KittyKatSmile - great news, its a fantastic thing to see the heartbeat in the early scan..Dont worry mcuh about the intralipids, as others said Mr.S dont even prescribe it for NHS patients and many have success..
Welcome to the new ladies those who have joined..Good luck in your journey!!

@Hopeful07 can I ask why Mr S did put you on steroids and Hydroxy? I know that the combination of both drugs works well for many ladies. Also I had 6 MCs and two of them under Mr S, don’t worry you just need to keep going, sending positive energy xx

that supposed to say “didn’t put you on”

@Megan234 - i failed with pred so Mr.S added hydroxy as well and asked to add g-csf if i m ok with it (jus bcos of the no.of miscarraiges). Earlier he used to prescribe only 10 mg pred with g-csf. But recently he changed the protocol to add the normal 25 mg pred.. So I took everything in this cycle, but now thinking may be i m over suprressed by the steroids and it didnt allow me to conceive in the first place..(i dont hav any immune issues except for elevated thyroid antibodies)

@Hopeful07 it’s difficult to tell why you didn’t conceive this time, but Mr S knows what he is doing. You need to try again and hope for the best.
Maybe email the clinic and tell them that you’ve been unsuccessful and see if Mr S wants to change anything. Keep going I know it’s hard but you can’t give up, sending lots of love Xx

Hey ladies, just checking in. How is everyone? Xx

Hi,
All fine here. Am 18 weeks now and feeling fairly well looked after with extra NHS consultant checks which is very reassuring. Struggling a little in the heat but so is everyone I think!
Love to you all x

Hi @Wishing5tar and nice to meet you! How are YOU doing? Huge congrats on your BFP, and I hope these anxious early days are going ok for you. Sending you love and luck.

Thanks so much for the Ovulation test advice @EmsIMO and @KittyKatSmile, you both made me chuckle. I never got any proper OV indication with the particular boots tests I bought but a quick check on other TTC boards confirmed that's not unusual. I probably need to look for either a more sensitive test or maybe try the Ovusense, it sounds pretty reliable. Weird personal question @EmsIMO but does it have any effect on your CM at all? At over 40 I'm just slightly concerned about disturbing the, er, balance of things up there.

I'm now on day 5 of the pred regime and must say, despite my worries, that I feel absolutely fine. We also had some good news yesterday: my fella re-did the comet test after 4+ months of Consensyl and no booze and the results are extraordinary. He's gone from a high degree of DNA damage to being within donor range. It's been a real boost for us. I don't know if DNA fragmentation has come up for any of you TTC with a male partner. I notice the male side of things isn't talked about so much but if its a concern I hope you might find it heartening to know that this kind of turnaround is possible.

@Hopeful07 I'm so sorry you're having such a tough time with this at the moment. I hope you and Mr S can find the balance that's right for your body. Rooting for you over here!

@Chickjen how are you doing? I can see its been a tough one for you too recently and I do hope you're starting to feel a bit better looking to the future.

I can feel myself slowly going into the weird dance of trying to balance my expectations as I approach taking my first test on this protocol next week. You guys know....

Anyhow, love and courage to all
xx

@Belarita I have sent you a pm about sperm dna damage, I hope you don't mind

Hi Belarita, your timing is perfect! 😎 We got DH's test results today and they look bad, (although nothing to compare them to for context) 40% damage, but the low damage ones which should be over 76% is only 15% 😱 They have recommended impryl and maybe seeing a urologist. Did your OH see anyone or just the condensyl?
I'm glad the pred isn't giving you any side effects 😀

@Chickjen my DH had 11% high and 34% low damage and has been on the Condensyl (which is now impryl). We saw two consultants who did the urine sample, scan etc. They said a lot of the time lifestyle changes, Condensyl and reducing heat stress (like hot baths/hot tubs) helps to improve the quality.

Sorry I may have missed it but did Dr S diagnose you with high NKC too?

Hi @Pop1234 yes high levels and overly aggressive NK cells, plus high TNF Alpha cells too (which are now normal after humira injections) We didn't do the sperm test initially but I had another chemical on the plan so DH finally agreed. He is a bit of a wimp when it comes to this sort of thing which makes me nervous about needing extra appts...😱 Thanks for sharing, I'm sorry you seem to be in the same rickety old boat 😢
How are you getting on? Are you on pred/intra plan too?

@Chickjen sorry you had a chemical on the plan. It's rubbish.

I was also like you, really praying his test would come back normal because I felt nervous about him having to have the scan and extra appointments etc but he had the scan and was fine about it. Don't get me wrong he was dreading it but we just made a joke out of it to lighten the situation. Have you seen Dr S for his results or did they just get sent to you?

I'm also on the complex plan for high activation NK cells. Currently on day 5 of the pred and finding it ok so far. How have you found it?