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

@Anatrina by chance I was looking through my notes and saw that I'd written down that my clinic could arrange pgs testing but it wasn't something they'd push unless I wanted it... hope that helps and good luck with everything x

Thanks @KittyKatSmile

Hi all, does anyone know if pred and cyclogest can delay your period? I did a test 2 days ago and stopped taking them as the test was negative but my period still hasn't come? It's been really a regular 28 days for a while but I'm now on day 31! Very frustrating

Hi @kdd1980, I'm pretty sure that's quite common and I've seen other people reporting that earlier in this thread. If you've the time maybe have a look back. For me it has definitely altered the pattern of of my period. My cycle has always varied by a few days but was predictable in terms of spotting and when my main bleed happened. Now that pattern has altered and there are weird gaps followed by a different pattern of bleeding and spotting. I also used the Ovusense ovulation gismo last cycle and found that I ovulated a few days later than I would have expected. Did you get a positive ovulation result when you expected to?

@Belarita thank you for replying. I scrolled for ages but couldn't see anything about late periods, sorry to repeat any questions. I'm still feeling my way through all this. I shall wait and see when my period arrives in that case... thanks again

Just checking in to see how you’re all doing and get the best news!! Omg @Chickjen OMG indeed!!! Such great news!!

I’m in the testing stage of my cycle. I swore I seen a very faint line on a FRER today but only with a camera and colour saturation up. I’ll see what tomorrow brings.

The prednisone is still going well and I will be talking to my cardiologist to definitely put me on this med long term as I actually feel human again with my energy back!

@Chickjen amazing! Congrats xx

Just checking in. Now nearly 25 wks. I decided to continue seeing Prof Akolekar at the clinic for the follow up scans. Thank goodness because he has spotted a problem, 4 weeks after my 20 week NHS scan which was all clear. The baby has a condition all duodenal atresia - a blockage in the small intestine. He is going to need very regular monitoring now and surgery as soon as he is born. It’s been a shock but we are getting used to it although I now have tonnes more appointments and don’t really know the full story yet. Anyway, just wanted to recommend these extra scans. His care and knowledge has been completely amazing. He responds to emails late at night and also called us at 10pm one evening to answer questions after a consultant at an NHS appointment scared the life out of me. Of course this is a very unusual case but I can’t help thinking how differently things might have turned out without a little niggle telling me I may as well have the extra scan.

@DaniMerl firs time of congratulations to you! I’m so glad you and bubba are being well looked after. Your doctor sounds wonderful and it’s reassuring to have this care. I know how worrying it is to find out something is wrong before the birth. I have personal experience of this with my last son. The red flags started appearing after his 20 week scan. I remember how worried my husband and I were. My boy is 5 now and starting school tomorrow. Yet it all seems like yesterday. Sending you lots of (((hugs))) and wishing you peace.

@DaniMERL thank goodness you are in safe hands. So wonderful that you are at 25 weeks; I remember you being here since the very start of my journey. @Chickjen as well.

@Wewin fingers crossed for you. It's a nervous time isn't it x

@DaniMERL I’m sorry to hear you’ve had additional worries but I’m so pleased Prof A is looking after you both - that must really give you some peace of mind ☺️ Thank you for sharing how valuable the extra scans are.

@Chickjen how you feeling? Has being pregnant sunk in yet? 💛

I’d like to get your opinion on something ladies. This is my second month using OvuSense. It’s says I am just entering my fertile window so I’ll expect to ovulate soon but today is 3 days before my 6 week no-trying hydroxy window ends. According to my normal period tracking app I was supposed to ovulate last week, hence the reason why we thought this month was still in the no-try zone and next month clashes with holiday. So do we just go for it, will 2 or 3 days before the official 6 week window really make a difference? Or should we hold off and wait until after holiday in another 6-8 weeks time?

@Anatrina
Fantastic news! Do you think they are knowledgeable in autoimmune issues? This is my main worry. Also, did you see a specific doctor? I was recommended someone named Dr or Trenos ( I can have a look later).

@Wishing5tar 2 or 3 days is nothing. I'd go for it. Good luck!

@Wishing5tar I would definitely go for it, personally x

@Wishing5tar go for it! Right, that's a quorum then!

@DaniMERL I'm so sorry to hear that, you must have been going through hell the last couple of weeks. Thank god you have profA looking after you, that kind of care is priceless. Thinking of you both ❤️

@Wishing5tar tbh no. The initial shock of a positive scan has worn off and the fear is back. The lack of symptoms really bothers me, in the past it has always meant bad news. I know the Pred is supposed to mask symptoms but I feel like my jeans are actually getting looser!
I would totally go for it this month too 😀🍀

@Wewin fingers crossed for your next test 🍀

Did Dr S say why progesterone is started right after ovulation? My doctor says after bfp because I don’t have low progesterone it’s just an extra support for pregnancy due to recurrent mcs. Should I do after ov or bfp?

@MrsMargot I’m not sure how much they know about autoimmune. He looked at my current treatment plan and said there would be no issue continuing with that alongside but I don’t know if they would give their own advice on it. Need to look into that. It was a different consultant that I saw.

@Wishing5tar I would definitely go for it!

Hello everyone,

I am going to the Guy’s Hospital tomorrow (my NHS reference for my 3 miscarriages). I do have a Dr S appointment at the end of October but I am trying to see what knowledge and what blood tests I can have prior to the meeting. Did anyone have the appointment? What should I expect?

@Anatrina Sounds good! I shall be keeping an eye on them too just in case I need them.

@zoe16 I don't have an answer to your specific question but on the steroids he is a firm believer in starting at ovulation and not BFP (as I discovered to my detriment) in contrast to a lot of other people. This is meant to be what sets him apart so I'd assume it's the same here...

@KittyKatSmile May I please ask why you think steroids after ovulation was not great for you? I am asking because I started at BFP and it did not make any difference... (I may have been in a very low dosage -10mg- but my consultant was not keen on giving me more. ) I am reading that indeed Dr S is starting everything at ovulation. However I am reading elsewhere that steroids may hinder pregnancy. I just want to go with my eyes open.

@MrsMargot let's be clear this is not my view, it's Mr S's that I was repeating. This is just what he thinks. I started at BFP in my previous pregnancy because I'd been advised they may stop me getting pregnant, I lost the baby and Mr S told me it was my fault because I hadn't started at ovulation as he'd recommended...

@KittyKatSmile Ah I see! Apologies for the confusion. Gosh, this was insensitive for him to say (not say was was completely out of line..) I am hoping my fiery personality copes with his own odd ways. Yes yes of course I did not mean it was you saying this. I am trying to gather info so I know what to expect.

Hey @DaniMERL so pleased you had that extra scan and at least you know now - hope it is all OK X

@Chickjen Hope you're doing alright x

@zoe16 From reading on here I just know Dr S is adamant you start taking his medication from near-enough ovulation. As someone on here said to me, if you're on his plan you might as well follow his instructions X

Hi Ladies, just checking in - After another unsuccessful Pred round, we're going to do a few goes on Letrozole (did two in June/July which didn't work). I wondered how many rounds anyone has done of this back to back? The medication makes me feel pretty rough but really want to give this a shot. I also wondered how long anyone on here has actually been on Pred for? I started back in February and am already starting to feel pretty crappy with side-effects. I just wonder how long you can tick along on this stuff for??! A year, two??! X

Hi all. Sorry if this is a TMI post, so after my first meeting at the miscarriage clinic I was given the usual vitamins list and baby aspirin to take for the whole duration of TTC. This is my first month on the medication (I haven't yet ovulated to take the pregnisolone) I have been on my period now for 10 days, the last 5/6 days have been either light or spotting. I'm sure it's the aspirin that's causing it, but I'm worried that it's not gonna stop, I have long cycles so won't ovulate until next week - unless my body wants to be spontaneously early this month. Did anyone else experience longer periods?

Thanks @KittyKatSmile @EmsIMO guess there is no harm in trying it after ovulation so I’ll do that next time. I’m not seeing DrS but my doctor is following his protocol to some extent for my NK cells.

@MairMum18 aspirin may very well be the culprit as I was told that it increases bleeding and should stop until bleeding stops. I’ve never taken it while on my period, just from ovulation. However I’m very interested to hear some views on this for future reference!