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 ladies,
I’m new and hoping it’s ok to join here? Accidentally joined the old thread doh!

A bit about me, 38 (not far off 39) and 3 mcs in the last 10 months, the last was a MMC (missed miscarriage) in July.
I’ve been to see Dr S ( self referred, and travelling from Scotland just to add to the cost 😕).
I don’t have high levels of NK but cytotoxicity was high, has anyone else had this?
Plus I have diagnosis of APS but was on aspirin and heparin for that last time and it didn’t work. I’m trying to get OH (other half) to do the DNA frag sperm test.
I’ve been put on the complex plan, haven’t started TTC (trying to conceive) again yet but hoping to soon, it’s so scary.... xx

@zoe16 The idea is it clears out any potential low grade infection from the endometrium. I was on it for I think about 2 weeks starting shortly after my bleed (I had a FET, not sure how this would work with natural cycles). I'll try and look out my medication protocol.

welcome @Eeviee is cytotoxity how agressive they are? if so i have this, although i have both, a high count and high aggression, i am on the complex plan too.
congratulations @fnej01 and @TinyPaws on your milestones!
@Wewin how are you getting on lovely? my pattern seems to be 2 cp's then a mc, so i know the fear of cp's and egg quality, but look at the positives, you handled the pred well and it didnt stop you conceiving, so you have to keep on. have you looked at fluoxetine? that is licensed for use in pregnancy.
@MairMum18 have you started the pred now?

Hello everyone! How are we?
I just wanted to let you know that I had some blood results back and it seems that I am positive for the lupus anticoagulant. Great 😥. I did some tests last year and they were negative. Now I am positive but just about. GP is supposed to order a repeat in 3 months to confirm.
I am wondering if anyone is on hydroxy/pred/progesterone/aspirin AND heparin. The only good thing is that I found out I suppose...

@mrsmargot sorry to hear about the lupus result. I’m waiting on mine coming back as well as a plethora of other things.

@Chickjen I had what appeared to be another short chemical. Very faint lines 9-12dpo then faded out. AF came a day late and very heavy. I’m on CD2 now and it’s pants. This part always sucks but I know I’ll be ok. My temps are still above the cover line and I felt so pg this cycle. I got the everything smelling different symptom that I get during pregnancy. I could smell my husband! The last time I smelt that smell was when I was pg with my youngest. So maybe we got real close this time... it was so lovely to feel pg again and I’ll never complain about the nausea ever again if I ever get a starting pregnancy!

I’ve had to go back on my antidepressants but the doctor wouldn’t prescribe any “safe” ones as said they are all not good for ttc. After 6 months and 4 chemicals. We are really fed up so binning the OPK’s, not charting anymore but won’t be preventing either and if by a miracle I get pg then I’ll start back on the protocol.

Sorry I haven’t a happy update for you all. I see the RMC again at some stage, will see what all my results are.

Congratulations @TinyPaws that is just wonderful news!

@MrsMargot and I wanted to say, maybe this will be the perfect protocol for you. I really hope so.

Hello ladies. Hope I can introduce myself here.

I've recently seen a private Dr who has prescribed prednisolone following three miscarriages. They weren't consecutive - I had two, then my LO, then another. I've also been on Clexane and baby aspirin for the last two pregnancies.

I've had a read through this thread and it seems most of you ladies are under the care of the same Dr (Dr S?) and are only taking prednisolone for a certain amount of days each cycle.

My Dr has prescribed 20mg a day throughout the cycle. Does this seem unusual? I haven't even been tested for NK cells but he said he would recommend the prednisolone whatever the results, 'just in case'.

Anyone on a similar treatment plan? Thanks in advance. x

Thank you @Wewin I hope too. I do not know if Dr S is prescribing any heparin but the Dr from Guy’s said that I definitely need it next time. 😔

@waitingforarainbow
I think your prescription is unusual in terms of what I've seen on here.

But maybe the private Dr. has further information regarding your history that makes it necessary.
At the outset id have loved Dr S to prescribe prior to his expensive testing.
I hope you're successful x

Morning Ladies

@Chickjen Thanks for starting this new thread & hope you're doing OK X

@KittyKatSmile Interesting to read what you have said about taking a break from Pred and actually getting pregnant that month (although it didn't stick) I have been on it since Feb/March now and am rather fed up with it! Am seeing Mr S tomorrow so am going to speak to him about this.

@Wewin Sorry to hear you've had a chemical, hope you're OK X

Ladies whose husbands had the Comet test (sorry, I can't remember who I chatted to about this) Did your husbands just see Mr Gordon or did they see the Urologist too? My husband had a rather unhelpful email conversation with the clinic yesterday and it seems they want him to see the urologist first, then Mr Gordon, which will all work out at around £700 ish!! My husband has had the majority of tests done already and ideally just sees Mr Gordon, but I wonder if anyone else saw the other chap first? (sorry, I can't actually recall his name) He's been on Impryl since July/Aug, when we had his rather awful results.

Also, I wonder if I am in the minority here under Mr S because, my issue isn't miscarriage, but that I can't actually get pregnant. I have a 5 year old daughter and we have been trying for over 4 years now for a second. I do have a low AMH - but some IVF treatment aside, where I had a successful round but miscarried at 10 weeks (probably due to pesky NK cells etc) outside of this, I've never been pregnant again - not once got a positive ping on a test. I wonder if anyone else is dealing with this? X

And lastly, those talking about Ubiqinol COQ10, would you mind sharing where you get it from please? I'm always on the look out for brands others have tried - am currently trialling a non Ubiqinol one but would like to switch back X

@MrsMargot sorry about your result, I didn't realise it could change like that. There have certainly been plenty of ladies on this thread on pred/progesterone/aspirin/heparin but I'm not sure with hydroxy as well. MrS would prescribe it but if the NHS are offering maybe it's better to take it from them and save a few ££'s 😀

@Wewin I'm really sorry to hear it's a chemical 😥 4 losses in 6 months is a lot in a short time span, no wonder you are feeling fed up, taking some time off mentally from TTC (but not physically) sounds like a great idea, hopefully it will give you a chance to recoup, and you hear so many stories of 'just when I had given up' ❤️

@waitingforarainbow I agree with @Naticle it does seem unusual compared to others here, but then we are taking the pred specifically for NK cells, maybe your Dr is prescribing it based on something else.

@EmsIMO I am going to the clinic tomorrow too! (about 1pm)
My husband did the sperm comet and started Impryl but we didn't take it any further, he wanted the chance to lose some weight first, and then the current 'situation' came up. I would suggest to ask MrS tomorrow what he recommends for your husband, and maybe take the previous tests with you, sometimes I find him more flexible about these things rather than the nurses/office who insist on everything by the book.
Have you had tests to rule out any physical reason you can't conceive? Maybe MrS can advise there too 🍀

@Chickjen thank you! Yes I will definitely accept them if they offer. I did not know they could change either! And I was so cavalier thinking I have ruled this out... the doctor said that in order to confirm I need another test done in 3 months. You cannot apparently confirm with just one. I am also borderline so she said that it ‘may be inflammation from something else’. In any case, I am certain I have some sort of issue with clotting. The private doctor I was with for my third pregnancy said that I should get heparin next time. And that was before this NHS test.
By the way, can I ask, is the comet test the same as DNA fragmentation?
Also, how are you?!

Good advice @Chickjen I'll take his results along with me and maybe see you tomorrow! x

@MrsMargot that sounds horribly annoying and frustrating, so it's not clear cut even now 😥 I hate all these maybes and waiting!
Yes sperm comet is DNA fragmentation,I think they have a slightly different method for testing which of course they claim makes them the best!
I am ok thank you, the last 2 weeks have lasted forever and I'm a bag of nerves, but I'm feeling a bit better knowing the scan is tomorrow and I can get some kind of answers. I still don't feel pg ☹️

Thank you ladies, I appreciate your warmth and kindness.

@EmsIMO I did a lot of trawling through Amazon one day for good quality ubiquinol and got this one. I take 2 tablets a day so it lasts 1 month. I’ve officially taken it for 1 month but the day it takes 3 months to take effect. I’m hopeful in 2 months time I might see the benefits of this with a good egg. 600mg per day is the recommended dosage that some fertility experts say in USA.

Thanks @Wewin x

@Wewin interesting about the ubiquinol! I take the Bio-Ubiquinol Active from Pharma Nord. Apparently it is of the best quality. My nutritionist has put me on 200mg of ubiquinol (I was 600mg CoQ10) but I would be interested in young my dosage and this pharmacy Nord is pretty expensive. I think I pay around £100 for 150 capsules or something similar. I shall have a look now! Thank you!

@Chickjen I am SURE everything will be fine!! You have my best vibes for tomorrow! I have to say, I totally feel for you! This waiting and maybes etc is a pain in the backside. Everything will be fine!! ❤️❤️❤️

You’re welcome @EmsIMO & @MrsMargot.

@chickjen totally agree with mrsmargot - all will be fine! We can’t go by symptoms, I had all the symptoms this month but only a very faint line for a few days to show for it. Hope to hear your more confirmation good news very soon.

Thanks @Chickjen, it wasn’t how aggressive they were, I’m sure he said it was how they responded to a state of pregnancy. Maybe that’s the sane thing?
@MrsMargot I had borderline lupus anti-coagulant but have tested consistently high for anti-cardio lipin which causes ‘sticky’ blood. Last pregnancy (pre dr s and nk cell test) I was on aspirin and Heparin but sadly that one didn’t stick. I’ve now been put back on both and my aspirin dose doubled if I get pregnant.
Out of interest, have any of your OH s DNA frag test come back normal?

@Eeviee I was put on 150mg of aspirin from BFP the 3rd time (that was when we thought I did not have the lupus anticoagulant) along with progesterone and prednisolone. It did not make any difference sadly. The NHS doc at the fertility clinic that tested me said that I need heparin and aspirin next time. Are you on aspirin every day while TTC?
My OH did a few tests: the first was a sperm analysis. The motility and count were way above normal (which is good) but morphology was 2. From 4 upwards is considered ok. He did a DNA fragmentation at the same time and it can back normal. He did a lot of changes, worked with a nutritionist and he took quite a few vitamins. He did another DNA test at the NHS 3 months later and the morphology went up to 3.5. That was 4 months ago. Back then we thought that our main issue was quality. Now I am sure that this is the least of our issues...

@Eeviee my husband’s test came back normal... Dr S even joked that they were better than the standard they’d look for in a sperm donor (like his ego needed to hear that 😂)

I feel like I need to vent ladies and you’re the only people who’ll understand 😔 I just had a crazy meltdown at work, sobbing at my desk and the thing that tipped me over the edge... organising the bloody Christmas party!! I said last year after it was mega stressful that I wasn’t doing it again & I guess in my head I hoped I’d be off on maternity leave and therefore I wouldn’t be here to do it (I can’t be the only one who does this - sets milestones of when they’ll be pregnant/have a baby?! By Christmas, next birthday, summer holidays etc 🙈 pure self-torture!)

I think I’m just having a super emotional day. My sister found out on Friday last week that they’ll be auntie and uncle for the first time (it’s her husband’s brother who is pregnant) and it hit me hard that despite 4 pregnancies, it wasn’t me that was giving them the title 💔 The couple had only been married 3 weeks before and then here they were announcing a healthy 12 week pregnancy already (I guess it just felt a little unjust after 5 years of marriage and 2 years of constant heartache). But the biggest sting was at my little nieces dancing presentation, I sat and watched them tell her their exciting news & saw how ecstatic she was 💖 She’s only 4 and I have absolutely adored her since the minute she was born and I guess I’d never really thought about how much I’d love her to have a cousin to play with until it smacked me in the face that I wasn’t giving her one first.

Anyway I’m rambling haha but I feel slightly better for having shared! I think AF is due today, (although I ovulated later than I expected according to Ovusense so who knows). I’m hoping my hormones level out soon as I can stop being a fragile mess 🤞🏽😂

Baby dust to you all xxxx

@Wishing5tar big hugs to you I feel the same with every announcement at work, just married and suddenly a healthy 12 week scan. It's not their pregnancy that bothers me so much as the feeling of 'well there's another person who will never understand this loneliness and pain'
For me my niece is my missed landmark, her due date and the due date of my first pregnancy were 3 days apart, it could have been so perfect watching them grow up together, now she is nearly 2 and the only grandchild on my side of the family (whereas on my husbands side there is already about 7 and no one would notice/miss one more) I think it's lovely your close to your niece and there is still time for you to give her a 'favourite' cousin ❤️
No experience of organising Christmas parties I'm afraid 😂

@Eeviee ah I think that is different, I don't think mine changed with pregnancy.

@MrsMargot @Wewin thank you for your positive vibes, they seem to have worked! 😀

Oh @Wishing5tar I totally feel for you 😔 I have this sort of deadlines too but we put these deadlines to ourselves. We should get rid of this sort of pressure. I can totally understand the announcements too. During my first pregnancy a friend was also pregnant and she gave birth to her daughter with no issues. She went on saying ALL the time, to ALL of our common friends and myself how easy it was to get pregnant and how much she enjoyed pregnancy and her easy birth. She knew of course I miscarried. Still to this day I do not know if she was just ignorant or had an issue with me. Needless to say I do not see her anymore 😇. It happens that all of our couples close friends have babies now and it is extremely difficult to keep up (they talk only about baby things, they want playmates for their little ones) and for us is not easy to cope discussing babies all the time. It gets quite isolating... it is what it is I guess... we will get there!

@Chickjen I knew it I knew it!! I am SO happy for you!! ❤️❤️❤️❤️❤️😍😍😍😍

@Chickjen 👏🏽💙💖 sooo happy for you hun!! Was this your 10 or 12 week scan??

I’m the same with my nephew, I was briefly pregnant at the same time as my sister. Whilst I went on to have my third miscarriage, she had a gorgeous baby boy who is 11 months old next week 💙 So it’s almost like looking at the baby you could’ve had isn’t it 💔 she was literally the worst pregnant person too. She jokes about it now but honestly we barely spoke for months as it hurt too much to be around her constant whinging and ‘poor me’ attitude 🙈

@MrsMargot I’m so pleased you don’t see that ‘friend’ anymore, we honestly don’t need people like that in our lives during such a emotional time! I’m also exactly the same about baby chat with friends. My two closeness friends both have little girls and while they are 100% supportive about how I feel and what we’re going through I do feel like we don’t have as much in common with each passing day.

That’s why I’m so appreciative for you lovely ladies and messages that pick me up on the down days 😘😘 xxxx