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

996 replies

Chickjen · 11/09/2019 22:33

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

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HoldingOn2Hope · 19/11/2019 12:11

@KittyKatSmile oh no :( that doesn't give me much hope. I spent a long time researching which Dr to see. I'll have to see what happens a at my nect appt, I do have an appt with Prof Q in December which I'm holding on to too.
Congratulations on your pregnancy :)

KittyKatSmile · 19/11/2019 13:12

@HoldingOn2Hope oh no, I didn't mean to worry you. I have been successful on broadly the same protocol as Dr S put me on. And he's known to be very successful; there are a few people in here who are also pregnant on his protocol. I was also having ivf this time so it made sense to only see one clinic to do everything x

chlo04 · 19/11/2019 15:11

Hi ladies,

Wondering if anyone please can help?

I took a pregnancy test this morning ( negative).

I got a positive ovulation test on the 9th of this month. I know on DR S plan I should test at DPO?! But when is that?!

Is that the day I get positive ovulation test or is it a couple of days after that that I ovulate?

Long story short, did a test this morning NEGATIVE! Gave up hope but today my I've noticed my boobs on certain areas ( around the sides nearer to armpits are feeling abit tender)

Also I've had milky white discharge today ( not itchy or anything).

Should I test again or does it sound like I'm clutching at straws?!

williteverhappen · 19/11/2019 17:23

@chlo04 I started the pred regime (NHS not Dr S but similar - pred, cyclogest, aspirin, heparin, folic acid and a selection of vitamins) at the beginning of this year. Had 2 chemicals then a BFP and now 8+5 weeks pregnant. Currently waiting for 10week scan next thurs. The prednisolone messed up my cycles so started acupuncture in September which I believe helped as I got my BFP. It was incredibly frustrating for me so I had a break for 1 month after my 2nd chemical then started back again. Hang on in there xxx

FrannyAnny82 · 19/11/2019 17:57

Hi @chlo04 I started the pred etc the day after a positive OPK and tested 10 days after that. I think I ovulate about 24 hours after a positive opk but it's all guess work tbh because I don't temp. Hope this helps! And you're definitely not out yet x

HoldingOn2Hope · 20/11/2019 10:08

Has anyone had a hyfosy scan? Dr S has recommended it and rather then travel to his clinic I thought I'd book it a local private clinic. He said that would be ok as long as it's done.
I

MrsMargot · 20/11/2019 10:14

Hello everyone,

Apologies for my absence but I was feeling a bit rubbish with my strong headaches from pred. Well, guess what. I did a pregnancy test this morning (11 dpo) and it is positive 😱😱😱😱.

I am scared to death and happy in equal measures. I called the clinic this morning and I am going for my intralipids. 😱😱 I also need to do a rush lupus anticoagulant repeat test to see whether I need to start Fragmin. I want to take it anyway so this will be a battle.

I should also say that I saw him 2 day after ovulation (I had already started the pred from my leftovers) and I bet he will question the dates! 😬 I hope everything goes well...

@zoe16 Congratulations too!! I am very happy for you! ❤️❤️

KittyKatSmile · 20/11/2019 10:14

@HoldingOn2Hope I've had hycosy rather than hyfosy and from a quick review of google I can't really tell the difference....

KittyKatSmile · 20/11/2019 10:16

@MrsMargot oh my goodness! Congratulations!! So exciting for you. Get that calorific gizz into your arm and settle back for the next wait!!

williteverhappen · 20/11/2019 10:38

@MrsMargot that's brilliant news! Congratulations! xxx

FrannyAnny82 · 20/11/2019 10:54

Congratulations @MrsMargot!!! That is amazing news!! X

zoe16 · 20/11/2019 12:47

eeeeeek wonderful news @MrsMargot, congrats! Aren't you happy you didn't skip this cycle?! I got my intralipid yesterday and will start clexane next week after my first scan. Like you i'm scared and anxious but feeling very positive this time around. Just gotta take it day by day xx

Chickjen · 20/11/2019 13:41

@zoe16 @MrsMargot what great news from both of you ❤️❤️ I have everything firmly crossed these are the ones 🤞
@HoldingOn2Hope I am 18 weeks today under MrS protocol so don't lose faith in him yet. I actually found him far more caring and sympathetic than the NHS consultant I saw so I guess it depends what you are used to, but at the end of the day, his protocol is working where previous ones haven't which is all that matters 😀 good luck for your results 🍀

@KittyKatSmile 24 weeks!!! Yippee! What a wonderful milestone 🎉🎉

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MrsMargot · 20/11/2019 14:09

@KittyKatSmile @williteverhappen @FrannyAnny82 @zoe16 @Chickjen thank you thank you thank you!! Your wishes mean so much to me! 😘😘😘

@zoe16 I do not regret it one bit! I am of course worried thinking ‘did I have enough pred on my system?’ ‘did it build quick enough?’ And other similar thoughts (I was on 10mg for the first 2 day instead of 25mg). I do know that this is not what will make or break the pregnancy but after all the things we have gone through we are all worriers 😬. Not to mention that it does feel a bit surreal. I really did not expect to be pregnant the first month of the programme. I am definitely not complying. I am just shocked! 🤯🤯🤯
I am on my way to the intralipids now. How quickly did you book your first scan with Dr S? On the paper they gave me it says that I need to see them for a scan at week 6. This is in 2 weeks I guess. However I really want to know what I need to do with the heparin situation!

Chickjen · 20/11/2019 14:53

@MrsMargot check with the nurses when you go for intras, either they will already know or they will find out for you, they are really helpful 🍀

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zoe16 · 20/11/2019 18:10

Thanks @Chickjen and wow time is flying for you!

@MrsMargot I did not expect to fall so soon either, especially considering what others on here had said about pred causing delays. I just hope it was a good egg and sperm! I'm not with Dr S but my doc had pre-booked me for a consultation and since finding out he said he'll keep the appointment and give me a scan (I should be almost six by then). He wants to wait for the scan before giving me heparin, but you should ring your clinic and find out if you should start now.

I've been feeling sickly, like i'm about to come down with the cold but my body is fighting it and it has me worrried tbh as it happened in my previous pgs. Shouldn't my immune system be suppressed by the pred so not able to fight anything?

HoldingOn2Hope · 20/11/2019 22:26

@MrsMargot Awww congratulations on your bfp!!! How exciting for you! This gives me hope :)

@KittyKatSmile what was the procedure like? I'm just terrible at needles and being prodded! I faint at blood tests and feel queasy with paper cuts! 😬 sometimes I think I'm going though this to toughen up. I've cancelled my hysteroscopy twice as thought my uterus scan was all fine so didn't need it. Mr S wasn't very happy and said I should have had it done months ago!

HoldingOn2Hope · 20/11/2019 22:28

@Chickjen Congratulations on your pregnancy! I read up on Mr S and reviews etc so I'm glad I'm with him but I'll be honest I'm used to my nhs consultant who at times has just say and listened, passinh me the tissues and making me a cuppa but I guess that's not given me the results I need! Lol

chlo04 · 21/11/2019 13:55

Hi everyone,

Feeling so stressed as I seem to not be falling pregnant 🙁 can I ask how long it took on DR S high protocol it took everyone to fall?

How often you did the deed and how everyone tracked ovulation?

Also when did you all start taking your medication?

Really could do with some advice. Feeling so deflated about everything at the moment.

Thank you x

HoldingOn2Hope · 21/11/2019 15:39

@chlo04 Hi lovely, I'm sorry you're feeling this way. I remember feeling like that a few weeks ago and just couldn't stay positive. I've only just had my appt with Dr S on Monday so have no advice to offer as I won't be on a plan until I see him next in a couple of weeks.
How long have you been on his plan? And do you have any follow up appt's so that you can speak to him about this?
I have fallen pg in the past however all ended in mc. I track ovulation using the clear blue digital and use 'fertility friend' app which tells you you fertile days so i try and make sure we DTD during that window. Xx

Wewin · 21/11/2019 22:38

Oh my goodness! Another BFP! Congratulations @MrsMargot. I’m made up for you!! Hoping all goes really well 👍🏻😊

williteverhappen · 22/11/2019 09:09

@chlo04 - We DTD every other day after AF and then the day of a positive ovulation test (I use the internet cheapies from ebay) and then on the day of ovulation. We did start by trying to dtd as much as possible but found that less is more as it gives dh's swimmers time to replenish and also dh was exhausted and found it more difficult to "perform" when DTD everyday. I know its hard but try and hang on in there xxx

Wewin · 22/11/2019 13:48

@chlo04 I used to chart and use OPK’s too (internet cheapies). But now I don’t use either and just go on my cervical mucous and only have sex when I feel up for it. All the charting and OPK’s and frequent sex got too much for us. But those ways are sure fire ways to get pregnant ASAP. Now I’m not even sure we are dtd exactly around ovulation but that is ok with us as we are both much happier this way.

ginandtonicformeplease · 22/11/2019 18:02

Hi ladies. So I got my BFP from my FET this morning!

Now it's just wait and see - I'm booked in for intralipids next week, the pharmacy should be sending me more meds as well. I'm just so worried something will go wrong. I'm on 20mg pred, oestrogen, progesterone and clexane. Plus of course vitamins and my regular meds - I absolutely rattle when I walk!

KittyKatSmile · 22/11/2019 23:11

@ginandtonicformeplease hooray! Amazing news! I know how terrifying it is. Just remember the old mantra 'today I am pregnant' and take every day as it comes. It does get easier, I promise xx