Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

@Wireless77 I’ve always had positive tests at 10dpo (and have conceived twice on SO). I’ve asked about this a couple of times and basically if you are pregnant but it’s too early to get a bfp, stopping the meds for a few days will not have a negative impact on the pregnancy (many protocols don’t start them til bfp anyway) whereas if you continue the meds waiting for a bfp (potentially one that never comes) it can disrupt your cycle going forward, which you don’t want when ttc obviously! And certainly at the moment with covid it’s best to be on them for the minimum amount of time possible.

@Crystal2020 @HarrietM87 - thank you! I'm on day 10 post ovulation and think I have a positive test. It was barely visible around 6am, a shadow. At 3pm it looks more like a line and started developing under 3 minutes. Both tests are FRER. Excited and anxious in equal measure. Not sure if I have line eyes...

Not sure test photos are allowed here... In case they are, does this look positive enough to book intralipids?

Yes! That’s a bfp! Congratulations!

That sounds so promising @Wireless77! Great news! X

Definite line! Delighted for you! Out of interest, how many rounds of SO have you had? X

@Wireless77Congratulations! I definitely see a line. Everything is crossed for you xx

@Crystal2020, I had one cycle last year, but it was an odd one and I then had to travel and could not continue, so I don't count that one. It's my 3rd SO this year, and a 2nd pregnancy out of these 3 SO cycles.

Thank you all! Keeping my fingers crossed!

@Wireless77 definitely a bfp! Congratulations and wishing you lots of luck and baby dust for this one! Xx

@HoldingOn2Hope, thank you! I went through a mmc a couple of months ago (following a few chemical pregnancies) and there was a moment I wasn't sure if and when I want to try again... Very much needing that baby dust and hope you'll feel better soon! Xx

Gentle congratulations @wireless77. Nice to see some BFPs. Xx

@Holdingon2hope sorry for you having to repeat all that to me - I remembered you saying about the letrozole and gonalf when we spoke I just couldn't remember where you were in terms of cycles - I'm with @crystal2020 you are amazing - like I said, great approach xx

@Wireless77 gentle congrats to you lovely - great line for a day 10! If you don't mind me asking - what sort of size follicles are you getting at your trigger scans and how many dominant? X

Sorry ladies just catching up after a long day driving to and from the clinic! @Wireless77 gentle congratulations ❤️ And @HoldingOn2Hope you are literally superwoman with the strength you’ve shown throughout all this! I hope you enjoyed your baking.

Had my second SO follicle scan yesterday and it wasn’t great. My lining was only between 5-6mm so Dr S has started me on progynova 3 times a day. I only had one dominant folicile on my left at 16.5mm and a smaller one at 14.5mm. He’s given me the trigger to take tonight and said ‘it only takes one’ but I’m not feeling very hopeful. He said if it doesn’t work, next month I have to double the letrozole to 5mg and take the progynova from day 4 to 24. Also when Geri was talking me through my meds she said I have to double up the Cyclogest as well although Dr S never mentioned it and it’s not wrote on my form, but I’m guessing it’d be okay?

I’m working on the basis that the odds are against us this cycle and we can keep our fingers crossed that next month might be more promising 🤞🏽 I guess this way I limit the disappointment.

I hope everyone else is okay? And enjoying the return of the sunshine xx

Hi @Wishing5tar, they doubled my Cyclogest this month too so I think he has changed everyone’s protocol. I found the change from 1 to 2 had a big impact on me and gave me an awful lot of symptoms this cycle (hopefully that isn’t the same for everyone!). I bet the Progynova will work wonders for your lining. This month was my 2nd time taking it and lining was 9.5mm on day 10 and he said it looked “juicy” haha! Although it didn’t do me any good this time around, here’s hoping for next. Wishing you lots of luck this month. X

@Wishing5tar your lining only needs to be 7 at ovulation so if you take the trigger tonight there will be plenty of time for it to get there. My first pregnancy was my first ever cycle of SO and I only had one follicle. I think Mr S was very surprised - he said I’d hit the jackpot - but it shows it is possible! DH was going away the following week to a zika country with work and the advice was to wait for 6 months after return before ttc so it was our last shot for a long time.

Interesting though that he’s started prescribing progynova a lot. Everything I’ve read about letrozole says it doesn’t thin the lining but it definitely thinned mine - there was a noticeable difference as I increased doses. The cycle I conceived this time my lining was 5mm on day 9 and I triggered on day 11 and was fine.

@Crystal2020 thanks for the info re the Cyclogest. Do you take one morning and one night or both together? I must admit after a few days I always just feel unclean given they are quite messy but I do use the front door rather than the back 🙈

Great to hear the Progynova is working for you and sending you lots of luck that next month is the one 🤞🏽🤞🏽

@HarrietM87 Your story gives me hope ❤️ Here’s hoping my lining thickens up soon! My lining was 6.8mm last month but because it was my first scan, I’m unsure whether it’s always been thin or as a result of the Letrozole 🤷🏻‍♀️ although in the past I have always wondered whether my problem was actually implantation not really happening as it should, so maybe a thin lining contributed to that - so many unknowns 😂 xx

@Wishing5star I agree with @HarrietM87 - I’m convinced the lining issues are related to the Letrozole. I never had an issue before this!

So I asked Dr S about the Cyclogest and he said he didn’t care if I did one morning, one night or both together at night. I did them morning and night but I might change it up next time and see if there is a reduction in wind (gross!) if I do them both at night. X

Hello All

I am so glad to have found this thread. I have had 4 mc (1 dd in between). This bfp I have been prescribed prednisolone, metformin (for PCOS) thyroxine (to manage my thyroid) high dose Vit D, high dose folic acid, cylogest pessaries & clexane 40mg. All bar the prednisolone I have been on before in previous mc.

My q is has anyone had success with the prednisolone? I am only 4+1 so I know to get to 7weeks for my scan is going to feel like a lifetime. Any feedback is much much appreciated.

Hello @recurrentmiscarrier and sorry you find yourself here! A lot of the ladies on this thread are under the care of Dr Shehata who runs a private clinic in Epsom and also works for the NHS. He prescribes pred from ovulation (rather than just BFP like other clinics) for 10 days which you then stop if you get a BFN or continue until 12 weeks if it’s positive. Some woman who have suffered another miscarriage on the Pred (me included) he then adds in hydroxychloroquine too. There has been successes on the Pred or Pred and hydroxy combo over the recent month/years so you’re definitely in the right place for hope, information and a whinge with women who know exactly how you feel ❤️

Gentle congratulations on your positive! The main side effects that people talk about on the Pred is insomnia and fluffy faces 😂 when the little white downy hairs becoming more prominent.

Xx

@recurrentmiscarrier sorry you find yourself on here. A lot of the ladies on this group have had success with pred so fingers crossed it works for you too. Are you seeing Mr Shehata?

@HoldingOn2Hope I have just read the entire thread and want to say to you as a woman with 4 miscarriages behind her also, you are a ray of sunshine. Words can't describe the strength it takes to keep going after all the heartache, and I admire you.
I am in Northern Ireland, so unfortunately am not under the care of MrS. There are no recurrent recurrent miscarriage specialists here. I haven't been offered any RM testing on NHS as I haven't had 3 consecutive. I see a private consultant, however her knowledge isn't always the best, and to date have found myself researching and educating her.
My question after reading these threads is what is hydroxy? I've never came across it before and was actually a fight to be prescribed the prednisolone this time round. Slightly panicking now in case i need to be offered something else. I also haven't came across the intralipids? So have 0 knowledge on them also. My losses seem to never progress past the 6 mark, although 3/4 have had heartbeats. I am never sick, even in the pealk of winter and definitely believe it is NK cells, however testing is not offered here.
@Wishing5tar thank you for your reply. I suddenly feel at home reading similar experiences. I have no-one to confide it about this and definitely think this thread will be my go-to for the next while. I am crossing everything that this time works.

Hi @recurrentmiscarrier and welcome! I’m very sorry to hear about what you’ve been through. I’m from Ireland too (south) but I live in England and I know it’s like night and day in terms of what you can get access to over here.

Hydroxy is hydroxychloroquine and it’s been in the news recently in relation to coronavirus but it’s primarily used to treat malaria. Dr S told me that he has been using it successfully for many years. He recently swopped myself and some others on this thread from pred and on to the Hydroxy as he perceives it as being more low risk in the context of coronavirus. This is my 2nd cycle taking it and I’ve had no side effects and I’m feeling more ‘myself’ than I was on the pred. Dr S insists on the intralipids but I think the jury is out on how effective they really are. Some progressive clinics (like Braverman) in the US have revisited their research and found there is no benefit to them so they no longer offer them.

In terms of the NK cells, you sound similar to me. Things always go wrong for me by 6 weeks, I am never ever sick even when my husband is pretty ill etc etc. I just knew in my gut that I had them so it was almost a relief when I got the test results from Dr S which showed I had high levels of NK cells which are also very highly aggressive.

I wish you so much luck with your pregnancy. I know the stress of it is such a lot after loss but fingers and toes crossed the pred etc will do the trick for you. X

Hi @recurrentmiscarrier welcome, and sorry that you’re here. I’m also from NI but living in London now. I had 3 mcs, then a healthy son on prednisolone and progesterone, then another mc where I conceived accidentally and started the pred after conception. I’m now 21 weeks pregnant again, also thanks to prednisolone and progesterone and all seems well so far thank goodness. I’m convinced the pred did it for me so great you’ve got it! Do you have any other autoimmune conditions? I also have hashimotos so on thyroxine - autoimmune issues, especially coeliac and hashimotos, are very common among Irish people so could be worth getting checked for those too.

@recurrentmiscarrier just wanted to say hello and congratulations on your bfp! I’ve had 6 miscarriages in total, 2 of those were whilst on Prednisolone (1 at positive pregnancy test and then one recently under Dr S and from ovulation). I’m still under Dr S and he is adding Hydroxy next time. I have to take it for 8 weeks before trying and am starting it next week. Lots of women seem to have success on Prednisolone alone so fingers crossed for you.