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

@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!

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

@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?

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 😊

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

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

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

@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?

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

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

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?

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 :(

@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.

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

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??

@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 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

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 :(

I’ve found the pred is hindering things. I was on 20mg each day but I’ve tapered it down to 10mg. I’m just going to stick to 10mg then up it at BFP to 20mg again.

Without the pred I was having stronger chemicals each month (few days of BFP). On the pred 20mg I’ve had very weak cp’s or bfn’s. I prefer bfns so it’s been nice to get a break from the chemicals.

My immune system has been weakened. The bronchitis hit me hard and I’ve been ill for 2-3 weeks. Thankfully I’m coming through it. I was so glad I wasn’t pg whilst ill, I could not have coped.

@summertimehere I really hope everything is ok and like @Chickjen says hopefully it’s the pred masking the symptoms.

My micronised DHEA arrived from the states today. It was £50 and will last me 2 months. I’m not ordering anymore. My ubiquinol is £53 per month (kaneka blend 600mg per day). Plus prenatals, steroids, progesterone, folate etc I’m wondering how I’m going to find £600 towards Christmas as all my extra little bits of money have been going towards fertility. I’m sure it’ll all work out though!

@MairMum18 yes suppresses the immune system temporarily. I guess he thinks if you didn’t take but still tried you may conceive but lose it if not taking the steroids? Kind of no point in taking them if you can’t conceive though....

Thanks @EmsIMO I ok now but that was horrific. I was driving and felt totally freaked out. Luckily I haven’t suffered insomnia yet..: suppose it affects us all differently.

Hey @Eeviee Not manic but I get dreadful insomnia while taking it, which is fun! Often get headaches too. Hope your symptoms ease X