Immune/NK cells pred thread #31

@MediaMinion I’m really sorry to hear about your worries, it’s such a hard time before any scan, but especially if you have no symptoms. I wish I could advise, but I’ve never been pregnant on the Pred. I hope your scan goes well tomorrow and it’s just the Pred masking the symptoms as Dr Shehata says ❤️

We've got a scan tomorrow and I'm not feeling very positive, hopefully the pred is masking everything but I think that's unlikely. I think others have said they still have some symptoms.

Hi @MediaMinion, I'm prescribed the same as you but haven't started taking it yet as we'll try in December. I was pre-warned by Dr Shehata that prednisone masks the symptoms of early pregnancy and not to worry about it. Gentle congratulations by the way, have you noticed any side effects from taking prednisone so far?

Hi everyone,

I'm taking 20mg of pred per day and I'm 6+6 weeks pregnant after 5 miscarriages between weeks 5 and 7.

The pred is worrying as my symptoms aren't obvious at all.

But also my blood pressure is sky high.

I've got a 7+1 week scan on Friday but are either of the above issues familiar to those on this thread? And what happened next for you?

TIA

Hi ladies

Sorry for the slow reply, I went offline for a while to process recent test results and distract myself.

I spoke to Dr S and he recommends I stick to the RI protocol. I am awaiting a second opinion from my private doctor at The Portland Hospital who treated my previous MMC / RPOC.

I have been researching like mad how to reduce side effects and came across this lady. I really recommend watching her videos, there are lots of tips on how to manage / reduce / avoid side effects of prednisone. She's also on YouTube.

www.facebook.com/prednisonepharmacist

Just had my first real period in 2.5 years (birth of DD1, then breastfeeding, then back to back recurrent miscarriages with RPOC). Feels good to have my body back in a proper cycle again after so long. We are going to wait one more cycle to try to ensure my hormones have fully stabilised.

To prepare I've been taking high dose coQ10 (600mg), baby aspirin, plus all my other standard multivitamin prenatals / supplements such as vitamin D and omegas. My husband is also taking coQ10 at 200mg. We have both cut out refined sugar entirely. By the time we try again this will have been our regime for more than 3 months, which I understand is optimal for egg / sperm quality.

Really hope 2024 brings good news and the RI protocol works.

Hope everyone is doing okay xxx

That's great news about your OH @VenusStarr. I hope everyone's cycles/testing goes well and people get helpful results if they are being investigated. To answer your earlier question @VenusStarr , I think the hydroxy does make you more susceptible to illness. All the lurgies just linger more than I think they should.

Had my anomaly scan on Monday and everything is progressing well with our little girl. So that's good. Had a bit of a sobbing breakdown before I went in though - I hate that scan. Too many bad memories. Xx

@VenusStarr that’s brilliant news 😊 so pleased for you both! Hope your protocol review goes well, are you planning on doing a fresh transfer? We are still planning on doing IVF in the new year if haven’t had any luck before then, and have our nurse appointment next week to review the protocol.

I’m only 2DPO due to my late ovulation on CD25, long cycles are so annoying! But I’ve been doing acupuncture and finding it very relaxing so hopefully that will help me to be more chilled and accepting if it’s a BFN this month.

@Ems123456789 that’s fantastic ARGC are doing monitoring of your natural cycle, I wish I could have that done! What immune tests are they doing? Great they are karyotyping too, even if it’s fine it’s something you can then rule out to have a clearer picture. Interesting you have a call back from your RM appointment, will you ask in advance if you can have the results before going?

I FINALLY have my first NHS RM appointment (which is a joke in itself as asked to be referred a year ago after my 3rd loss) at St Mary’s in December. Does anyone have experience of St Mary’s? I don’t have my hopes up but hoping hearing another doctor’s opinion may be helpful.

hope everyone else is doing well xx

That’s good news @VenusStarr keep us posted!

I had a consultation with the ARGC who have recommended a monitoring cycle of my natural cycle to look at my natural hormones, plus Karotyping on both of us to check no genetic carrier issues and also updated immune tests. They seem quite thorough. Hopefully we can then consider more ivf. They seem more organised than previous clinic!

In the meantime I had some blood tests after my not so helpful nhs recurrent miscarriage appointment and I’ve been called back so they must have spotted something. Appointment isn’t until 5 Dec.

waiting game at the moment.

hope everyone else is doing okay.

@clhiu I'm so sorry about your chemical. That is so hard to go through especially with the rough time you have had up 💔 how are you feeling? I think it’s a good plan to go back to pred (and intralipids if you can afford it) next cycle, so you are giving yourself the best chance but not wasting money on SO which doesn’t seem to work well for your body. (Same for me). Thinking of you.

@VenusStarr so pleased your AFC was good and you’re feeling optimistic about IVF. Rubbish you’ve been unwell though, I’ve thankfully been ok so far on hydroxy, cold and flu wise. I got my Covid and flu jabs a few weeks ago - as eligible being on prednisolone. I’d recommend to go to your GP as important for you to be in good health, especially with your IVF coming up! Hope you’re taking it easy and resting up.

Ive finally started a new cycle after my loss in early Sept and just had my intralipids. I never conceive the first month trying after a loss but sure I will have my hopes up after ovulation anyway, can’t seem to help it! Sending love to all xx

Thanks @VenusStarr ❤️. I’m really sorry I hadn’t acknowledged your recent updates and progress, I’ve just been finding things extremely tough this past month. Really pleased to read about you AFC, it sounds promising. Always good to have a plan and next steps too.
I haven’t got experience with hydroxy or any of the stronger immuno-suppressants and can’t say I heard about your particular type of cold doing the rounds lately, but I’d expect being immuno-compromised by the meds is likely to make even a seasonal cold worse than normal. I hope you can get over that soon, but glad it’s not covid x

Hi @fleur89 I am sorry to meet you here and hearing about what you've been through. Unfortunately most chromosomal abnormalities happen by chance and the fact they happed do not rule out immune issues on top of that too so it’s incredibly hard knowing what to do. I had 2 losses due to confirmed random abnormalities (2 different ones, the first one was also a very rare one, triploidy) so we decided to try IVF with PGT-A testing and the single euploid embryo we had to transfer resulted in a chemical pregnancy. I also had 2 other MCs prior to those two which were never tested so unexplained, could have also been aneuploidy or immune issues so that’s when I started looking at immune issues and found to have high NKC count and toxicity for which Dr Sehata recommended Intralipids and Prednisolone.
I tried falling pregnant again on his plan for 3 months + superovulation and had no success at all. On account of this and also the costs for the intralipids every month, this month we decided to ditch all of that and go back to trying completely naturally without immunes or superovulation and I felt pregnant again straight away, but this is sadly ending in a chemical again, which is my 6th loss. I think from next month I may go back to the ovulation instralipids and Pred, but I may not be able to afford it and I really don’t like how the pred makes my body feel, plus it was having the effect of making my cycles longer, which is the last thing I want when at every failure I just want AF to arrive so we can go again asap!
So hard to know!

Hi @fleur89 , sorry to find you here and for your losses.

I think its hard to know and really it's your call. But I guess if you didn't take all the meds, something that you could consider is making sure eggs and sperm are in the best condition (the clinic recommends Coq10 for women and impryl for men and both following a Mediterranean diet). That might reduce the chance of a fertilised egg with unhealthy sperm or egg. And taking progesterone after ovulation might make the womb more 'fussy' so less likely for a aneuploid embryo to implant. I have had five pregnancies (one in progress, one healthy DS), 3 miscarriages and two of those had chromosomal issues and although it took me 10 months to get pregnant this time, I think the above (vitamins and progesterone) helped me. I believe i do need the additional meds as had an unexplained miscarriage at 19w with no chromosomal issues but I understand your reticence. The ladies on here are wonderful and a fantastic source of knowledge so hopefully can help too. Good luck with your decision making. Take care, Katy x

Hello! 2 MMCs following healthy baby - secondary infertility. First I assumed was bad luck, second got me worried and the tissue was sent for testing. In the meantime while waiting a loooooong time for results I got blood tests done and these came back with all markers clear apart from high nk cells and high activated nk cells in pregnancy. Prescribed by Dr Shehata progesterone, intralipids and prednisone from ovulation.

Today my local nhs hospital contacted me with my dna results from genetic testing... this took MONTHS to come back to me. Turns out the pregnancy had genetic abnormalities - tetraploidy, very rare and nothing I could have done differently was the diagnosis.

So in this situation - armed with this information - what do I do? Do I try without the steroid interventions, given the nhs said chromosome abnormality was the reason? Or do I throw everything at the next try and go ahead with the nk cell reduction plan?

Concerned about side effects of steroids under the nk cell plan so please let me know if anyone has experience that would help reassure me. I'm naturally very petite so any weight gain would be immediately obvious. Moreover, my grandma had osteoporosis and I'm concerned about steroids triggering that.

Hi @Wednesdaysotherchild I don't take pred because of the side effects but my losses are in the second trimester so I don't have any problems getting to 10 weeks it's after that my difficulties start showing.

I was able to tell Dr S that the mental health side effects were too severe for me and as a fellow clinician and a Psychologist I was quite clear with him they were not something I was willing to tolerate. BUT this was also during the height of covid when he was quite skittish about people on pred. I had ovulation intralipids instead. And on that plan I had a healthy pregnancy so when they asked me to go on pred for this pregnancy/plan I could confidently say no because I've already been successful.

Pleased your feeling hopeful now @VenusStarr - lovely to hear. My AMH was similar to yours last year June (6ish) and I know the numbers don't mean much but I still looked for successful pregnancies with that amh on mumsnet for reassurance. Good luck with it all!

Katy

@Wednesdaysotherchild @VenusStarr yes we added Tacrolimus so I stayed on the Pred. To be honest when I came off the pred at 16 weeks I was soooo sick as it’s know to mask the symptoms of morning sickness so my 2nd trimester was my hardest. I guess we just have to accept the totally shit side effects on this journey and hope it all pays off. Does he suggest anything new on your protocol this time?

@VenusStarr thanks, I’m already on hydroxy, plus intralipids and adalimumab (x4). I’ve done a lot of 2ww and 5 rounds of IVF on steroids (pred or dex) and every time I end up with palpitations and dizzy or fainting at slight exertion. But he was pretty firm I should take pred even so…

Hi, has anyone had a situation where you can’t tolerate pred medically and how did CRP handle that? Do they have any workarounds?