Immune/NK issues - aka Pred Thread no. 23!

[Chickjen]

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

Hello All,

I just need some advice. I have booked an appointment with Dr S mid November- earliest available. I also have a nhs referral to Prof Quenby for December and in the meantime her assistant has booked me to have the nk cells test after my next ovulation which will be this week. It's costing £540 as it's in the same clinic but not on nhs. She said this would just speed things up for when I do see Prof Quenby. But because I'm so impatient 🙄 I've made an apt with Dr S. now I don't know what to do. Dr S's secretary has said he will use any tests and results I've had done on nhs or private as long as he's happy with how recent they are. I've had 3 consecutive mc's and I'm now in limbo - do I just wait for these appt's or do I keep ttc?
I was really on a high knowing my appt with Prof Q was this month but it's now end December. I feel like I'm wasting the months, is that normal? Really need to get a grip ang stop worrying about becoming pregnant. I'm just having a bad week :(

Did anyone find DR S high NK plan delayed your period? I'm 4 days late without any sign of my period. I stopped my medication on the 18th?

Does anyone know if this is normal? Xx

@HoldingOn2Hope its really hard to stop ttc for any period of time but I would suggest that since your appointment with DrS is a few weeks away, I would say hold off on ttc if you can. After my second mc my doc advised me to stop ttc and run tests but we weren't careful and we got pg right before my appointment which had to be cancelled due to the pg. Sadly we lost it and I knew right then and there that I did not want to get pg again without running tests. We had to pause ttc for six whole while we waited for our next appointment and test results! I must confess that the waiting almost drove me insane but I decided to use the time to focus on getting my mind and body healthy. I hope you will find peace in whatever decision you make.

@Wewin Vitamins for myself and DH costs us a fortune too as we try to get the 'good quality' ones! Not to mention all the healthy food items that we must eat daily!

@summertimehere good luck today love

Did anyone find that their first AF after mc was different? AF is expected any day now (i'm not completely sure when as last bleeding was my mc 4weeks ago) and I've been having very light spotting since yesterday. I know spotting before AF is normal, but has never been the case for me even after my other mcs and I'm just wondering what this could mean? Has the mc messed up my cycle??

Hello,

@zoe16- the body can react differently after each miscarriage. After my miscarriage my next AF was really late and it started with spotting for a few days.

@ Eeviee - in my first two pregnancies i conceived on the first try ( this was without pred). So this is really hard for me to understand and process.

Should i start looking at other options, treatments.
Does anyone know of any other treatments or plans or clinics

@zoe16 sounds like it could be lower than normal progesterone levels for you this cycle. I’m sure I read that having a mc can affect the next cycles’ hormone levels. So don’t be worrying as it’s more than likely a one-off. I’m sure I had this too after my mmc/d&c.

Yes I guess I should just get used to spending a lot more anyway if I want another baby. It’s good preparation for the spending that’s potentially to come.

@chlo how many days late are you? Taking progesterone can delay your period by a few days.

Hey @Zoe16 Are you taking Baby Asprin on Mr S's plan? I've found that that makes my period heavier and I spot, whereas I didn't before. I think after my MM my period took a while to 'get back to normal' (whatever that is!)

Feeling very disheartened today Ladies, Round x4 of Letrozole and I mistakenly tested early (just mixed my days up) and tested Monday, got a positive line, then tested again today and got nothing, zero, zip, nada. Four years of trying and this was my first positive test (outside of 1 round of IVF that worked) I'm guessing perhaps there were some hormones there, that my body tried to do something but it didn't work :(

Thanks @KeepingFaith1@Wewin I guess the mc has messed things up a bit and I just have to give my body time to sort itself out.

@EmsIMO no haven't started his plan as yet, planning to start this cycle if it ever starts! I'm sorry you're feeling so disheartened. I agree, it does sound like your body was trying this cycle, hopefully it works next cycle. Have you been doing trigger shots with the letrozole?

Hi ladies,

Did anyone find there periods after the first cycle on DR S plan was really strange?

Mine was 5 days late, is very uncomfortable. ( bad back pain, pain in my sides) also is weird pinkish colour and seems lighter than normal? Would love to know! Thank you x

Thankyou @Chickjen went yesterday exactly 6 weeks scan showed sack and yolk but no feral pole or heartbeat. EPU said was normal and come back next Tuesday for another scan.

I know my dates are exact and ovulated day 12 so pretty sure I should have seen heartbeat. I know my body is telling me it’s all over but nothing to do but wait.

I hate the way these professionals don’t listen to us

@summertimehere oh no, so you have another week of waiting 😥 I have seen so many times on early pregnancy information that it might not be possible to see the heart beat till 7 weeks. But maybe it comes down to what is normal for you? Have you been scanned at 6 weeks previously? Or maybe the egg took longer to travel to the uterus?
How about emailing the nurses at the clinic for their opinion? Perhaps they could suggest something like doubling the cyclogest.
I think I've said this before but I hate waiting and maybes! I'm sorry your scan was inconclusive and you have to wait again. Thinking of you ( and still keeping my fingers crossed) 💐

@Chickjen they said same as EPU, interesting you say that about cyclogest I had thought of that too as know have thin lining. I asked Dr S nurse and she said no continue as normal. But I was thinking maybe I’m bit low in it, would it do any harm if I doubled it up?

Hi all, I’m new here. What a strong and inspiring group of ladies you all are! I hope it’s okay I’ve joined the conversation.
I have had 5 MC (all between 4-12 weeks) trying for baby #2 over the last 2 years. All since having a very straightforward ttc/pregnancy with DS who is almost 4yo now.
I’m 35 now and have had a multitude of tests which came back inconclusive. Now seeing Dr Gorgy (does anyone else have experience with his bedside manner? I don’t find him easy). He has suggested LIT therapy for low antibody protector cells and intralipids/clexane/steroids for high NK cells. Oh and also an IVIG after bfp. Want to do everything I can to support my chances but nervous about this level of medication, has anyone had success with any of the above treatments? x

Ahhh @zoe16 I'd forgotten about the bloody Letrozole - I think if you test early it can give you a false/positive, bugger :( Hey ho!

Sorry to hear you're having a hard time @summertimehere so tricky to know what to do - A friend was in a similar position but had early bleeding and did double up on Cyclogest, but if the nurses are saying otherwise ... who knows! Hope your scan next week is more positive X

Hope you're well @Chickjen X

Hi @Hoping1234 We're in a similar (ish) situation - I have a 5 year old, and have had a few chemicals and 1x IVF missed miscarriage. Have been seeing Mr S since Feb. I don't have experience of Dr Gorgy, but I'm sure some Ladies on here do so hopefully someone can answer your question, good luck X

Hello ladies,

Can I ask any of those who've had the womb scratch test for nk cells what to expect at the procedure?
My appt with Prof Quenby isn't til December how we I'm having the test done next week at the same clinic but with a fee of £580! 😳
I'm hoping to go on holiday a few days later so just wanted to ask if I'll be feeling okay to do so xx

@summertimehere I certainly don't think it would do any harm. They recommended doubling up to me when I had bleeding, and before going to DrS I had been prescribed it from the NHS miscarriage clinic and their dose was double as standard.

@EmsIMO I'm still holding on thank you! Sorry to hear another unsuccessful month for you though 😥 how incredibly frustrating!

@HoldingOn2Hope no experience of the scratch as such but I did have a hysteroscopy once and they took a sample of the lining which I imagine was pretty similar, and I was perfectly fine afterwards. I went home, had a nap (exhausted from the stress beforehand I think) then went and did the weekly food shop 😂

Welcome @Hoping1234 I am taking steroids and intralipids for high NK cells and so far it is working for me 🤞no experience of the other recommendations though, although I'm pretty sure @KittyKatSmile took clexane

Thanks for your responses ladies.
@EmsIMO it’s frustrating when you can’t find answers. Hope you get somewhere with Mr S (is this Shehata?)

@HoldingOn2Hope I’ve had 4 endometrial biopsies in the past 2 years (don’t ask!), and was fine afterwards- a little spotting and faint cramping which all subsided by the next day. I think the lead up to the procedure was the most stressful bit. I took paracetamol beforehand which helped.

@Chickjen glad to hear intralipids / steroids are working for you 😊

@Hoping1234 hi and welcome. Yes, as @Chickjen says, I did take clexane (good memory!) along with steroids, intralipids, oestrogen and progesterone (those last two because it is an IVF pregnancy). It was kind of hard going because the injections aren't very pleasant but of course it was worth it once I actually knew i was pregnant. Do you have any particular concerns or questions I can help you out with?

@KittyKatSmile I thought clexane was only if you had blood clotting issues. Were you taking it for blood clotting issues or NKC?

@zoe16 this is a great question! I actually have no idea why my clinic put me on Clexane although I don't have any clotting issues so I'll assume for the NK cells. Someone somewhere else on mumsnet gave me a really hard time for taking clexane; I think was suggesting I should listen to their advice and just stop rather than listening to my doctors!!

@KittyKatSmile lol I'm wondering if I need it although no clotting issues. Doc has said no but not taking any chances so I'm seeing a new specialist next Wednesday and will def ask him his opinion. Mind you, i'm terribly frightened of having to inject myself daily, but will do it if necessary!

@KittyKatSmile I think it must be Zita West's standard treatment for patients who've miscarried - I have to take it too.

AF arrived this morning so on the oestrogen in preparation for FET - will be back on the pred next week. I really hope I don't pile on the weight like last time.

@ginandtonicformeplease that's exciting that things are moving on for you. The waiting is the worst I find. Just go with whatever the pred throws at you xx

@Hoping1234 hi and welcome, I’ve seen dr S but have heard of Dr Gorgy although don’t know anyone who is being treated by him.

@zoe16 I was put on heparin last time from bfp (think that the same as clexane) but I do have APS. Apparently heparin actually also has an immune dampening effect (both my NHs consultant and Dr S) told me this but I don’t think that’s why they prescribe it, I think many clinics just want to reduce the risk for any clotting issues. The injections weren’t that bad although the bruising stayed for months and unfortunately it didn’t work for me. 😞
@HoldingOn2Hope sorry i don’t have any experience of endometrial scratch.

Please can anyone help? I'm feeling extremely anxious.

I have started DR S high NK plan last month. I got a positive ovulation test on the 7th so I started the meds on the 8th.

I tested on the 18th and it was negative, I have tested randomly until yesterday and all tests so far have been negative however I came on my period on the 23.10.2019. It started off heavy and I had a few clots and now it has tinkered off to pink blood, it has been pink blood yesterday and today and hardly anything there.

I'm really worried I could be having another ectopic pregnancy but I've not had a period like this before. I'm worried my HCG is just rising really really slowly.

Has anyone else had this happen on DR S high plan. My period was also 5 days late and has lasted two days not very heavy at all. Is this normal on the medication?

I am on
Pregnacare and fish oil
Aspirin
2 X vitamin D tablets all the time.

I am then on the following during ovulation for 10 days:
Progesterone
Pred steroids
Omprezole