Immune/NK issues - aka Pred Thread no. 21!

[Tee4me]

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

Hey lovelies

@Taxgirl1 what makes you think you may not have ovulated? I don't actually track my temp, or even know how to do it, I need some education on that!
From what I have read as we get older it is normal to have a month or two with no ovulation, bloody annoying and inconvenient though!! I am seeing Dr S this Thursday in Epsom. I am really impatient to start on the Pred Protocol now. I am getting the flashy face on the OPK and it's taking a lot not to take advantage of this window.
Did Dr S mention that Superovulation option? If you feel you aren't ovulating maybe that could help. Presume you are seeing Dr S after cycle 2 if no BFP?

@zarala thank you so much for checking in!! It is so good to hear from you and hear your positive stories. It gives us hope

@DaniMERL fingers crossed for testing this week

@taxgirl1 that’s disappointing for you. I do temping a seem to have the surges but sometimes I don’t have a whole lot of faith in my thermometer. It can change by 2 degrees if I re-do it immediately after the first reading. It could also be true that you didn’t ovulate this month but that doesn’t mean it’s all over, like @sunshineblonde1 says.
@zarala (tagging in case you miss this)

I have a positive test this morning! Trying not to get too excited as this happened 2 months ago and then they disappeared. But it is a much clearer line. I have zero symptoms etc so it took me by surprise. For the first month I had no expectations and left the room for a bit only to come back and find the line. I have intralipids on weds in Epsom. Obv it’s v v v v v early days.

@DaniMERL OMG hold the phone that is SO exciting!!!! I am doing a celebratory shoulder wiggle dance for you as I am typing at my laptop. Enjoy this moment hun and best of luck for intralipids on Wed - keep us posted x

Oh my God that's amazing @DaniMERL. Keeping everything crossed for you. Good luck on Wednesday. I've heard the pred masks the symptoms...

I'm wondering if I should get some clomid. I am kinda hating this whole thing so it's good to get your good news @DaniMERL

Ah thanks guys! It’s weird being the person who brings good news for a change. Long may it last!

I know nothing about clomid I’m afraid :(

Good luck today with the intra lipids @DaniMERL. Hope it goes well x

@taxgirl1 thank you! All went well and scan is booked for 3 Jan. Let’s hope we can get that far

@DaniMERL YAYYYYYYYY!!!
Omg sooo happy for you!!!
I know it's very early days but that's fantastic News right before Xmas!
What are you on? Pred?
I am sure jan 6 can't come soon enough but it will and I have everything crossed for you that it will be perfect!
Congrats!!
I just had my 20week scan yesterday and everything looks normal and good- they checked for cleft palette (standard on nhs) and I was so so relieved to see everything looks perfect

@zarala thanks! Yes on the pred, progesterone and intralipids. Trying hard to not POAS and google stuff constantly but it’s hard. Especially weird that I’ve not even missed a period yet so all feels a bit premature.
Great news about the scan! So amazing. Have you found out the sex?

Hi Ladies.

I wanted to come on here and share my story with you. I am another Dr S success story and wanted to come here to give you hope. I used to be on these threads a couple of years ago and always loved hearing positive stories. I gave birth to my baby boy 2 weeks ago and it's all thanks to Mr S.

My story is that I have a 4 year old DD and had no issues getting pregnant with her and it was a textbook pregnancy. When she was 1 we started trying again and I had 3 miscarriages in a span of a year. They were all the same: I would get to 7 weeks, start spotting, and miscarry by 8 weeks. As it stands with NHS I had to wait to have 3 miscarriages before being referred for further testing. I was 37 at the time and knew time wasn't on my side so we decided to go privately. I went to see Dr S after miscarriage number 3 and was diagnosed with NK cells and sky high tnf-alpha (I think it was 58). I started the pred and after 2 months had my tnf-a retested and it went down to 27. I got pregnant soon after that but, again, miscarried by week 7. All my miscarriages had been natural so unfortunately I didn't manage to get it tested. However, after being on pred for 7 weeks I started to get really bad side effects (I was always ok on it short term). I felt very anxious and started to get very bad heart palpitations (to the point that I thought I was going to have a heart attack). I decided to stop the pred and after speaking with Mr S we decided to go with hydroxy only (Mr S did mention that he had never had a patient react to pred the way that I did). Again, I got pregnant a couple of months later but had another miscarriage. This time it was a MMC so I had Dr S test the foetus and it came back positive for Trisomy 16. So no drugs in the world could have saved that pregnancy. It was comforting to know that it wasn't that the treatment plan wasn't working, it was just one of those things. We decided to have one last try with Mr S as, at that point I already had 2 miscarriages on his plan. It was costing us a fortune and I felt I wasn't getting any further than I had before. I got pregnant in Feb and this time everything went as it should be. All my scans were good (prior to that I always measured behind on my scans with my miscarriages), it was such a straightforward pregnancy that i was in disbelief. I even delivered on my due date.

My little boy arrived on the 1st and he is my little miracle. After 5 miscarriages I never thought I would get here. I always loved reading all the success stories but I never thought I would be one of them. The last 3 years were hell and I will never forget them. However I, somehow, came out on the other side.

I used to search the internet at all hours looking for success stories to give me hope and I hope my story provides this for you. I wish you girls the very best of luck and hope you get to hold your little rainbow babies soon. I feel that I owe it all to Mr S.

If you have any questions about my treatment or anything else please don't hesitate to message me.

xx

Wow @PJ12 thanks so much for taking the time to post. That’s amazing news. The 2 further losses are worrying but I can completely understand what went wrong with them. I am only 4 wks tomorrow and can’t shake the worry of another chromosomal issue although I know there’s nothing at all that can change that. I’m just hoping that after 4 losses this will now be our time. I also have a 5 yr old DD with no issues at all.
Thank you again and congratulations xx

hello, please may I join you? I came across this thread while researching natural killer cells. I'm under Dr Shehata for reoccurring miscarriages and my blood tests came back with high and active natural killer cells and sticky bloody. I'm about 7 weeks pregnant and have started the medication. I'm a bit worried about the prednisolone and side effects but fingers crossed. Feel a bit out of my depth

Hi @UnicornDust17 and welcome!

Congrats! Did you start on the meds from ovulation? Have you had your first scan?

I’m just 5 weeks and am having a paranoid time and am trying to stop myself testing like crazy now. I just can’t beleive there’s going to be anything in there at our first scan or it won’t be developing properly. This has happened so many times before and I don’t tend to have any m/c symptoms so really have no idea.

As for symptoms, so far, so good (although I’m currently awake in middle of the night and can’t get back to sleep!)
But mainly i’ve not noticed anything much at all. Maybe it’s too early yet.

Keep us posted xx

@PJ12 your story is so similar to mine. One DD and 5 losses but sadly I’m yet to grow my family. I’ve had 6 months off TTC and am not 100% on board with the idea of trying again but I can see how much my partner wants this. It’s hard to see him hurting so much but I also need to look after myself. I’m not in the best physical health right now so have work to do before I even consider it, and then we need to decide whether to try IVF or not due to our various diagnoses. Your comment gives me hope though. Congratulations on the birth of your little boy

Argh bad news here.
Early NHS scan (should be 6+4) showed NOTHING at all. HCG bloods measure 300 ish so they will redo them in 48 hrs but it looks as though it’s an early miscarriage/chemical pregnancy which had been reabsorbed or potentially ectopic. Scan with Mr S was booked for tomorrow but has been cancelled. They were very kind and helpful over the phone actually.
I’m gutted. Had no bleeding but had felt suddenly not pregnant over the last few days. I was hoping the steroids were doing a good job of masking the symptoms.

Weirdly, on NYE I had loads of clumsy incidents and broke loads of things. A friend said it’s hormonal and when I looked it up it’s a PMT symptom caused by dropping progesterone levels. Maybe a coincidence? V odd.

@DaniMERL I’m so sorry I know how you feel 😥 when I had my miscarriage in September I was absolutely devastated. Be kind to yourself and try to consentrate on the things you’ve got like your family. Life is cruel but we have to keep going and it will get better. Lots of love Xx

@Megan234
Thank you so much for your reply.

How are you doing now? I’ve lost track.
I know we will bounce back. I have just found
this 3 week wait for the scan completely torturous. It’s so so hard on the mental well-being

@DaniMERL Yeah every day gets easier. I was just over 6 weeks when I started bleeding, scan showed blood clots. I kept bleeding every couple of days but a week later when I went to see Mr S there was no heartbeat. I had MVA done at the Epsom hospital because they all know Mr S they looked after me very well. The kayrotyping came back normal (female). Mr S put me on steroids now as well as Hydroxychloroquine. I feel like if he would’ve put me on steroids in the first place I might still be pregnant now , but who knows. Back to TTC now.
Look after yourself Xx

Oh @Danimerl I am so sorry to hear that. I am gutted for you. How utterly devastating. Are you OK? When are you back at work? Can you take some time off to recover? Life is just so cruel. Sending big hugs to you. Make sure you take some time to grieve. I feel your pain. It's raw and debilitating and it really takes its toll!

I'm really unsure about the pred and all the temping and testing. I can't help feeling that if a pregnancy is a good pregnancy that it will last anyway but maybe I'm wrong. I'm so confused about how I feel about all of this at the moment and I really don't know whether I want to carry on trying pumping myself full of steroids - especially as I don't understand what is happening with my body at the moment. It seems all over the place and I've had two very short cycles after taking the pred and the progesterone - breakthrough bleeding whilst taking it. And I've had positive opks but my ava watch is suggesting that I haven't yet ovulated based on the data it had received. I'm confused and I just don't know whether I want to do this. I'm old and I suspect that my eggs just aren't any good any more. I feel close to giving up...

Oh my gosh I have been offline over Xmas and NY and missed so much!

Firstly @PJ12 thank you so much for posting your positive success story. It has come at just the right time. As we all know the journey to success is a very bumpy ride but if it means we get to have a sticky one in the end it is all worth it!

@UnicornDust17 Welcome! And congratulations on your positive pregnancy. Please let us know how you get on on the meds? At what point did you start taking the Pred with this pregnancy? I think we have all been united in our fear of the Pred side effects, both long term and short term. But Dr S's success rate speaks for itself. Although no one knows how exactly it works, it just seems to, so we have to throw ourselves into it and hope for the best!

@DaniMERL I am so sorry to hear your scan news . It's just so incredibly disappointing when that happens. Sending huge hugs to you. Fingers crossed it isn't ectopic? Please keep us posted. Here for you if you ever want to vent, I know it can feel so isolating when these things happen.

@Taxgirl1 I know how you feel. Since my MMC and D&C in August my natural cycles have changed from regular 29 days to 30-35 day cycle. I am hoping the weekly accupuncture I am having might help regulate them back. I am meant to start the Pred Protocol this month, but I may just start on the cyclogest (progesterone) and then IF i get a positive pregnancy I will take the Pred and intralipid. I know it is not ideal, but I don't want to waste time mucking my cycle up with the Pred, I feel like I don't have months to lose as my AMH is not great for my age. I think intuitively our bodies know what is right. If you need to take a month break off of the Pred for your mental wellbeing and to give your body a rest then I would do it! This immunology stuff is all so confusing!

Sending all positive vibes, inner peace and strength to deal with these pred/pregnancy challenges xx

P'S. What is the Hydroxychloroquine? I haven't got that as part of my treatment plan but wondered what it was?

Hello, sorry I lost this post. Have been having trouble with my phone, but thanks for tagging me again @Sunshineblonde1

I'm so sorry to hear that @DaniMERL

I'm 10 weeks on Saturday. I has a scan at 6.5 weeks and 9 weeks which showed all was on track so far, but really trying to keep the anxiety in check until my 12 week scan, as I know it could go either way.

I started on the meds at about 7 weeks pg due to a mix up with letters going to and from the hospital, so not ideal but Mr S's office were really supportive. I was worried about the steroids, but so far so good with them, I don't seem to have any side effects from the steriods, except my patience seems to be disappearing. and hopefully only two more weeks before weaning off.

I'm still getting used to Fragmin injections though, I just can't seem to do it without causing pain/bruising! And remembering to take all the vitamins.

Thank you for sharing your story @PJ12 I'm similar, had no probs whatsoever conceiving with DS1, but struggled with number 2, resulting in 3 confirmed MCs (all before 6 weeks) in 2017 and referral to reoccurring clinic. I'm also 42 so time is not on my side.

The past 10 weeks have felt like an absolute lifetime and 2 and a half left until 12 week scan.

Good luck everyone

@UnicornDust17 thanks for sharing your story! Euch those pesky Fragmin injections. I have had to take those too. I found pinching a good amount of skin together and injecting the Fragmin REALLY REALLY slowly once the needle was inserted, I.e. taking over 60 seconds to inject it stopped any bruising?

That’s such super and reassuring news that you are doing so well on the protocol with this pregnancy.

Hi all,
Not much new to say but keen to keep this chat going.
I have slowly decreasing HCG levels being monitored by EPU and I go to see Mr S next Thurs to hopefully talk about next steps.
I’m expecting Hydroxy and I may ask about superovulation.

Hope everyone else is well x

Hi @DaniMERL it is good to hear from you and hope you are ok . Let us know what Dr S says about next steps x
What is the hydroxy, I can see it as an option on the treatment plan but not ticked on mine so wondered what it was?

Also has anyone else's DH or OH done the sperm comet? Be interested to hear thoughts on that.