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Original poster

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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Original poster
Chickjen · 09/12/2019 22:36

@NicLondon1 my treatment was in 2 steps. First, humira to bring down a high level of TNF alpha cells. Then aspirin, prednisone, progesterone and intralipids for high and aggressive NK cells. So relatively similar to what your clinic is suggesting 😀

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NicLondon1 · 09/12/2019 22:22

@Chickjen I meant to ask, what is the treatment that you are on (and what is it for)? I may research it too... thanks

NicLondon1 · 09/12/2019 22:21

@MrsMargot well that is confusing isn't it! I guess there cannot be any huge negative effects if it gets prescribed in error, otherwise they wouldn't risk it, right? (But I can see that you would stop if you have that option)

MrsMargot · 09/12/2019 22:17

And @NicLondon1 no it was not painful for me at all. I did bruise a little bit but I was alright. Some injections were better than others in terms of bruising but nothing major. I was told to do them in the abdomen under the belly button (kind of). I was pinching and then going at an angle.

X

MrsMargot · 09/12/2019 22:14

Hi @NicLondon1,

Welcome! In terms of the heparin, I was in a similar situation. I had the APS test done privately in August 2018 and it was negative. When I went to the NHS clinic, they did it again (I was 3 weeks after my D&c from my 3rd ms) and it was positive. I was a bit baffled and they said I should repeat in 3 months to make sure that I was definitely positive. The 3 month mark is 3rd week of December but I fall pregnant again before that and Dr S repeat the test. Until I had my results today I was on Fragmin (heparin). My results were negative again so he said that I should just stop. Parallels, my GP offered me a repeat prescription of Fragmin due to my one positive result until I see a consultant after my 12 week scan. I am following Dr S advice and I am dropping them.

My previous doctor (private) he was very pro heparin until 12 weeks no matter what (I did not have a positive APS at the time). To be honest he sounded very much like @KittyKatSmile ‘s doctor that gave her injections until 12 weeks. My view is that will take anything that is needed but thank n this one I would stop them if you do not need them.

NicLondon1 · 09/12/2019 22:13

Thanks @KittyKatSmile and @Chickjen. I think I will probably get started on it.
What worries me that I have no idea what the diagnosis means in the long term.... googling it I've found terms like APS Syndrome . Will I need to be on Heparin for life?! Or is this just a conception-related thing?

Also, if anybody has any tips about how/where best to do the injections, I'd be glad to hear them. Is it painful?!

Original poster
Chickjen · 09/12/2019 22:08

@zoe16 congratulations!!! What great news from you and @MrsMargot and the magic of those tiny red pills 😀

@NicLondon1 I second @KittyKatSmile I hated waiting, and have totally lost faith in the NHS since my experience with their miscarriage clinic. The treatment that is working for me now is not something they ever would have offered (although it is offered in other areas and maybe you are in one of those areas)

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KittyKatSmile · 09/12/2019 21:39

@zoe16 I stopped at 12 weeks and the relief was incredible. I bloody hated those injections. To be honest I don't even really know why I was on them. I've heard of a few people going all the way through, but not many. If I had the option to stop, I totally would. Plus they're really expensive and quite difficult to get hold of. And I've heard people saying it gets quite hard to inject yourself once you get bigger, which I can totally see!

@NicLondon1 welcome to our bunch of misfits. We are delighted to have you with us. I would probably get started on all that stuff. For me the hardest part was the waiting and feeling like I wasn't doing anything. I also prefer the private route to the NHS sort of 'wait and see' approach. But obviously it's all completely personal choice. Good luck to you x

MrsMargot · 09/12/2019 21:16

@KittyKatSmile thank you very much. I know it is semi common and usually not an issue for concern but the idea of spitting brings back trauma and I would like to avoid it...

@Chickjen this is exactly what Dr S proposed IF O have any bleeding. Basically he said that ‘it is clearly old blood and you may have some bleeding. If this happens then you should stop the aspirin and double the utrogestan (I am on utrogestan capsules not pressaries). ‘ Now, I was on Fragmin on top of the aspirin because I had one positive lupus anticoagulant but my repeat was negative so he said to stop this. Hopefully this should help. I have to say that I am thinking to up my utrogestan dose a bit for a few days while continuing with the aspirin but I am in two minds. I know that extra progesterone is not harmful but again, I am not sure what is best. I just do not want to see any bleeding just in case I go to a downward spiral depression. 😬🙄

@zoe16 congratulations to you too!! I am so so happy for you! I know the feeling of release. This is the very first scan that I had good news. I am hoping with all my heart that this continues and we all have good news every scan. ❤️❤️❤️❤️

NicLondon1 · 09/12/2019 20:47

*Clexane not Clean

NicLondon1 · 09/12/2019 20:46

Hello all

Congrats on all the BFPs!
I wondered if I could please join your thread and ask for some advice?

I'm 41, have a DD aged 4 and had 2 miscarriages this year. I've recently been found to have high Thyroid antibodies and Anticardiolipin antibodies.

The NHS wants me to wait 12 weeks, stop ttc, then re-test. Apparently the antibodies can sometimes be due to a virus then disappear..? So they prefer to rule that out before diagnosing a condition.

However, I've also been to a fertility clinic where they would just immediately start me on the Aspirin, Progesterone, Prednisolone and Clean/Heparin injections.

Should I just go for it..? What are the chances of it being a virus that has disappeared, and would it be dangerous to take if so..?
Did you all wait the 12 weeks to be re-tested? Seems such a long time at my age!

zoe16 · 09/12/2019 20:45

@KittyKatSmile when did you stop clexane? @williteverhappen will you stop clexane @12weeks or continue whole pregnancy?

My doc is giving me the option of stopping at 12weeks or carrying on through my pregnancy. He said it’s my choice really as he doesn’t see the need for it past first trimester. But I don’t know what to do!

zoe16 · 09/12/2019 20:36

congratulations @MrsMargot! I also had a good scan this morning. I was such a nervous wreck, when they said they saw baby and healthy heartbeat I was absolutely speechless and in shock. I’m measuring perfectly for my dates too so I just hope we’ll keep carrying on like @Chickjen @williteverhappen and @KittyKatSmile🙂

Original poster
Chickjen · 09/12/2019 19:26

@MrsMargot I think I had that, it never got given a name but I had a rush of red blood a few days before my 6 week scan, so I stopped the aspirin and doubled the cyclogest on advice from the clinic. I was absolutely adamant it meant a miscarriage so I went for my scan with zero hopes and was amazed when everything was there and on track. The site of the bleeding was still active so Mr S prescribed nifidipene to try and stop it. I had a bit of spotting for a week or so more then it cleared up. If yours is old blood it sounds like your body may well have it under control already, but should you get bleeding I would suggest to contact the clinic in case they can prescribe something for you too.
And congratulations!!!!!!!! 🎉🎉

@MairMum18 I have everything crossed for you for next week 🤞 I didn't tell anyone either, just my husband and you guys, we still haven't told my in-laws even now ☺️ you have to do what is best for you 💐

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KittyKatSmile · 09/12/2019 19:00

@MrsMargot great that you got good news today. There are at least 2 people in my other mumsnet group with subchorionic haematomas. I think they may have been absorbed as I haven't heard about them in a little while. One of the girls on the BFN podcast has got one as well (spoiler alert but you could go on and listen to how she deals with it).

Sending best wishes to all x

MrsMargot · 09/12/2019 17:40

@MairMum18 thank you very much and I know exactly what you mean. We have told a few close people and our parents. They have been supportive but they do not know what to say. I very much value and appreciate the group here. It really is invaluable.

I should also say that I have no idea how I am not rocking in a corner either. It is beyond me. We will get there. ❤️❤️❤️

MairMum18 · 09/12/2019 17:30

@Chickjen I have my 7 week scan (through the miscarriage clinic) next Tuesday. The leadup has made me very anxious, I don't know how I'm not rocking in the corner somewhere. It's also my birthday next week, and with Christmas coming up I'm praying to the fertility gods that I have good news and not something that will bum me out for all the festivities.

@MrsMargot I'm so pleased you had good news from your scan. You're giving me hope for mine! I love that I have people to face this journey with! I haven't told anyone (not even my mother) about being pregnant so it's nice that I have you all to offload on and share with! Xx

MrsMargot · 09/12/2019 17:09

Hello everyone,

I went today for my 6 week scan ( I am either 6w 1d or 6w2 days ). Needless to say that I was scared to death. And as @zoe16 and @Belarita I have had zero symptoms. However it seems that everything looks fine. We saw sac, baby and heartbeat and Dr S said that everything looks great and measures perfectly for 6 weeks. Needless to say that I had so much tension that when he said this I started crying. Happy tears but it was the first time I had some good news from a scan. The only issue is that I have some old blood near the sac and I may have some bleeding if my body cannot absorb it. I am now worried about this. He did say that if it happens I should stop the aspirin and double the progesterone.

Did any of you had this before? I think this thing is called subchorionic hematoma. Is there anything I can do to help my body absorb it?

I should also say that I have spent most of last week in bed due to a nasty cold I caught. I mean, I lost my voice but at least I have slept a lot! 😎🙄🙄

KittyKatSmile · 09/12/2019 12:17

@Ultra26 same as @Chickjen. I thought you had to temp the whole time actually as your temperature only rises after you've ovulated so it uses that spike to predict future months?? But I may well have got that wrong.

Time does drag hugely up to 12 weeks. After that I think it goes crazily fast so strap in for the ride!

Original poster
Chickjen · 09/12/2019 11:57

@Ultra26 I used to temp the whole month just to make sure nothing weird was happening, if nothing else at least you get an idea when AF will start (or not hopefully!)

Ladies with bfp's my god time is dragging, I was sure you must all be 8+ weeks by now. Hang in there. The lack of symptoms makes for mental torture but does not mean bad news 🍀

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Ultra26 · 07/12/2019 08:56

Quick question .... is there any point in temping once you've started on the progesterone?

Belarita · 06/12/2019 22:09

Aw thanks for your messages @KittyKatSmile (that’s a truly great image to hold on to Grin), @zoe16 and @MairMum18. It really does help to know I’m not alone going slightly nuts. I also have been going around nudging my boobs like a pantomime dame. I am on the dreaded pred, so good to be reminded this is normal. Thinking of you all. Xx

zoe16 · 06/12/2019 12:55

@Belarita I can now say that the lack of symptoms means nothing. I had my first scan and we saw a yolk sac. It was too early to see anything else but it was definitely progress from my previous pregnancies where we only saw a small odd shaped sac. I go back on Monday to hopefully see baby.

@MairMum18 I feel the same sometimes, like I shouldn’t have ttc and put myself through this again, but how else are we to get our babies? I just hope we’ll all have good outcomes as I too don’t know how I will cope if this doesn’t go well.

Can’t say that this week was easy though, I’ve been super anxious and I’m on holiday!. If all goes well with the scan I can see myself being a complete nervous fool in between scans ☹️

Hang in there ladies💜

MairMum18 · 06/12/2019 09:58

@Belarita I'm lacking symptoms too, I have slightly tender boobs, but to the point where I have to give them a nudge every now and then to check they still hurt and then the odd cramp here and there.

I'm finding this wait until my first scan very hard. I had a breakdown the other day, thinking I've set myself up for more heartbreak, which I don't think I can take if it does end up that way.

Last night I had a horrible dream that I miscarried and now my anxiety is through the roof.

KittyKatSmile · 06/12/2019 09:15

@Belarita I can't remember but assume you're on the dreaded pred. It will mask most symptoms. I know it's comforting to have some so that you know stuff is still going on in there but in the spirit of positivity, thank your lucky stars you don't have lots of them (at least for now). I woke up with a mouthful of hot sick last night Grin

Love to you all ladies x