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.
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12 week scan today and all still on track! Blood tests have come back low risk for chromosome problems and it's a boy!! 💙

@sistaaa it could be either, it could be the meds or it could just be too early, I'm afraid really the only thing is wait and test again. Good luck! 🍀

@zoe16 just to say, I took the full dose and it didn't delay anything for me. 🍀

@PGJV what day would you suggest testing then please? Xx

@Chickjen that’s great news.. so happy for you! xx

@sistaaa I’d say test on the day the clinic has asked you to. I was told not to take the meds - pred and progesterone for more than 10 days unless I get a positive pregnancy test result. So I think test on the day you are asked to test by the clinic which is Friday if I am not wrong? I took the meds for 10 days from ovulation and did a test on the 11th day first thing in the morning - sadly I got a negative and so I stopped the meds. I was then told by the clinic to retest in the next 24-48 hours n start the meds again if I get a positive test result but I got a negative again and so I kept on testing every 48 hours until AF arrived - although that is not what the clinic suggested, I just did it because I felt like. After the 2nd negative test result the midwife just said that I should try again in the next cycle. Hope this helps! xx

@Chickjen congratulations! How lovely I'm glad all is well 💙
Even more excited about my appt with Dr S now!

Fantastic news @Chickjen congrats on your baby boy! Your story gives me so much hope!
Good to know the pred did not cause any delay for you, I hope it won't for me either. Perhaps i'll take the full dose then.

@Chickjen that’s great news. It makes it all the more real when you find out what you are having. You will be able to get some cute little things and I always found knowing the sex helped with the bonding.

@zoe16 I think I’ll stick to 20mg this month and then taper it to 15mg next month. That’s unless my cardiologist says stick to the 20mg. I do find my body needs the 20mg and notice when I drop down to 15mg but maybe 15mg would be better for implantation but we’ll see. There’s egg quality factor with me too so it’s hard to work out what’s what.

I’m just feeling so physically unwell these days. I’ve had a rattling cough for 2 weeks that’s making me feel quite ill now. Hoping I can avoid an antibiotic for it as have been populating with all the friendly probiotics and don’t want to have to start from scratch again.

Hi @sistaaa,
I’m possibly not the best person to answer as I’ve only just started my plan isn’t his recommendation to test after 10 days so that’s be tomorrow 18th? Think that’s already quite early for a positive pregnancy to show so testing before then may not show even if you were.

Tricky to know what your symptoms mean, could be meds, progesterone can cause tiredness / drowsiness and pred I think can cause nausea but also could be you’ve picked up a bug or could be very early symptoms. Sorry not to be able to help more.x

@Eeviee Hiyah,

Thank you for your reply!

It's hard to tell isn't it. I've tested today and not even a shadow of a positive line, so I'm thinking possibly this month is a miss. So odd as I seem to have so many pregancy symptoms! Woke up to my chin covered in spots and my breasts are slightly tender!

Isn't this whole trying to conceive thing a mystery!

@wewin, you're right,we can't blame the pred entirely as there could be other reasons for implantation failure. I think i'll take the full dose for a few cycles and if no success i'll reduce it.
I'm sorry to hear you are not feeling well, try to get some rest. Whenever I have a little cough, I make a concoction of garlic, honey and lemon and drink multiple times a day for a few days.

@sistaaa it’s so hard to know and it’s a total roller coaster - why, how, when it works or doesn’t work often seems so random.
@Chickjen managed to completely miss your message, that’s amazing need, you must be so happy. Thank you for giving me hope. So you managed to conceive on the full 25mg pred, did it take several cycles? How exciting 💙

@Chickjen amazing news! Sorry for the typo!

hello ladies.. just wanted to check if you you would recommend a specific ovulation predictor kit? I've never used one before but thinking of using one this cycle just so that I know when to start the pred and there is no confusion. I am on CD4 at the moment.. hope its not too late to start using an OPK now.. Thanks!

@PGJV I've been using the cheap ovulation strips for over a year now and I find them to be very accurate and reliable. I order a pack off amazon which includes 50 ovulation and 20 hpts. Really cheap!

Ladies, I am freaking out! I've been reading that chemicals/early losses before HB points to chromosomal issues but losses after HB means its not chromosomal and more immune issues. Is this true?!! With all my losses i've never seen a HB but I thought that my NKC was attacking embryo, hence no development. But if this is true 'm screwed and may have to do IVF/PGS testing. Please say its not so!

@zoe16 I’m pretty sure NK cells will get to work straight away. When you think about it Mr S. said that not taking the pred from ovulation can cause very early mc.

That’s not to say that we can do what we can to help egg quality too with taking ubiquinol, royal jelly, protein, tomato purée etc

All you can do is your best. If after a certain amount of time, you can always consider going down the ivf/pgs route but for now just see how things go. No point in worrying yourself about what may never be.

Thank you for the garlic, lemon & honey tip. I’ll get some. I’m on elderberry & vit c & ibruprofen. My face was all swollen and puffy today. I looked like the Michelin man! I remembered I ate a big bag of salted popcorn yesterday. It must have set my electrolytes off and caused water retention in my face! I’m drinking lots of fluids now and the swelling is going down thankfully!

@zoe16 I freak out about this all the time as I'm in the same boat as you and I asked Dr S (and a family friend gyno) the same thing and both their responses were that chromosomal issues are quite random so the chances of having 4 in a row is very rare. This is what I keep telling myself and the more journal papers I read the more I believe it. There's a lot of mileage in obviously eating an egg friendly diet to prevent reduce the chances of random chromosomal injuries.

Thanks @zoe16 I’ll check amazon..

I am sorry you are feeling this way but I agree with @wewin - all we can do is try our best, do as much as we can and think positive.. sending you hugs and positive thoughts..xx

@PGJV I got a relatively cheap pack of 60 from Ovaview but also have clear blue which I plan to use to double check ( although this month my plan didn’t work as they didn’t match up 😞)

I’m not sure, all I know is that I’ve had 3 early losses (all around 6 weeks) but my last was tested and came back chromosomally normal which makes me think that wasn’t an issue with the egg. I tried to ask Dr S about it but he didn’t really answer and told me there’s nothing that can be done for egg quality which I don’t believe is actually true. No harm in doing all you can for egg quality and hopefully the plan will work. x

Hi @Eeviee this one was my 3rd cycle with the pred. The first cycle I also conceived but it was a very early chemical. The second cycle, O fell around the same time as my husbands sperm test, so we did try but I'm sure we missed the key time, I did still take the pred though just in case but it was a bfn. And then this one 😀

@zoe16 I'm sure immune issues can cause early losses. One of the things I was treated for were TNF cells which make implantation difficult and chemicals more likely and I can't believe NK cells sit around and do nothing till the baby is a certain size. But what I would say is if your losses are early then the pred from O instead of bfp could be key (which I know you are planning), and personally if I were you I would try the full dose first so it gets to work on the NK cells asap, but then after a few tries if you feel it's hindering you then try a lower dose. (Only my opinion though and no facts to back it up) 😊

@zoe16, agree with @Chickjen. He was very clear with me on having to take the pred from ovulation. Also, I had 4 early mc, all before HB and I think they were NK and not chromosomal. Obviously hard to say (although the hospital did send the last 'products' (eurgh, baby, hate that expression) away for testing). Stick with it. Courage to you x

Ladies thank you all for your words of wisdom, I’ve calmed down a bit. It does sound very logical that the early losses would be NK as it attacks before anything can even develop hence why we have to take the pred from ovulation but I couldn’t help but freak out when I read that it was the other way around. I think it’s just anxiety about trying again and not knowing what will happen next time.

Don’t believe I’ve mentioned before, but my dh is a cancer survivor and we’ve always been worried that his chemotherapy would affect our chances of conception. Luckily, we’ve been able to conceive on our own but I sometimes wonder if there is a link between that and our losses. Hopefully, my NK is the prob and pred will sort us out. We’re both on loads of vitamins, antioxidants, nuts, healthy diet etc so we can catch good egg/sperm.

@Chickjen I’ve decided to take the full dose so hopefully it works quickly!

Thanks @Eeviee I’ve ordered the ova view opk from amazon.

@sistaaa Just to flag that Progesterone gives you pregnancy symptoms, sore/enlarged boobs, random pains etc so that could be what was going on x

@Chickjen that’s great that you conceived so quickly on the program!

@zoe16 can imagine that adds Extra anxiety for both of you , but then also it could be nothing to do with that. I’ve just started the program and have also been very anxious about what will happen and if it will at all. You’re in good company here 😊
@PGJV great! They seem good and get good reviews, I just need to drink less as think I was diluting my urine too much.

Hi this is my second cycle on the prednisolone and I'm starting to feel a little discourages (silly I know as it's only my second month trying) I'm trying to prepare myself for the next 3 months of BFN's and a few more tears.

I wanted to know if anyone who didn't manage to successfully get pregnant in the first 5 months, what happened at your follow up appointment. Did they change or add some new meds? or did you have to take a break? X

@zoe16 There's a really good book by Prof Lesley Regan, Miscarriage: what every woman needs to know. She's one of the world's experts on recurrent miscarriage. It really helped me think about everything. She has a chapter on NK cells and other immune conditions.

I've had two MMC, both times I've seen the HB at 7 weeks, then when I've gone back at 9 weeks they've told me it stopped growing at around 8-8.5 weeks. I've got very raised NK cells, but of course they don't know whether the embryos were chromosomally normal. It's IVF (due to DH's MFI) and we have several embryos in the freezer - the clinic's senior dr said that we could defrost them and do PGS, but due to our relatively young ages when we froze them (never thought I'd get called young at 36!) it would probably be a waste of money. A previous dr there said an option would be to start again with a fresh cycle and testing (not an option as we're almost out of money) but I may have got slightly cross with him and his manner and so been passed onto their senior man who has recommended just trying another FET 🤷‍♀️