Immune/NK cells pred thread #34

@Auberginesky @TammyinCork ahhh not many people know of Estepona - I also go every year but thats because my best mate has a villa out there. It really is lovely :)

Sorry to hear about the IVF @TammyinCork - i really feel for you. Putting your body through so much. I haven't heard much of Trisomy & either. Will be crossing absolutely everything for you in May.

How are you doing on the meds @Auberginesky are you getting enough sleep?

@Hopeandfaith1990 nearly at 24 weeks viability. Amazing you got reassurance scan and saw them moving around lots. I actually didn't know you had Preclampsia, so is that a scan every 2 weeks till birth? I too have no idea what my birth plan is - just want the safest way for the baby.

I had my GD test on friday and sadly i failed the test so I have got it. They gave me a monitor to check my bloods 4x a day. When the midwife told me i burst into tears and couldn't get any words out, i know it can be managed but just feel quite close and didn't want another hurdle. It is also so much to think about - i just want to enjoy food as it really is the only enjoyment, but everything I have has to be measured and paired perfectly, not to mention my finger tips are already bruised and i haven't even done a week. Baby is measuring 70% percentile, so not too big, but with GD they tend to like to induce at 38 weeks or defo not go over 40. Just hope he is ok and my apple juice craving hasnt done any damage :( also had the sugar flu this week - constant headaches from cutting it out. It will probably do me good being at bit healthy.
I am super grateful and will do anything at this stage. I think after week - they will see if i need Metformin or not. Currently keeping within the spikes.

@TammyinCork great you got a second opinion and that you only needed a small steroid dose as they are not ways fun to be on in higher doses! Fingers crossed! Ive been a bit jittery and sleeps a tiny bit more unsettled, i woke up at 4 am and just couldnt get back to sleep. What I did find helpful was taking the progesterone in the evening as it was making me quite drowsy.

@Rainbowchaser87 glad your new regimen is suiting you better. Did they say that steroids can make it a bit harder to get pregnant? Are you able to start TTC again after starting the hydroxy?

Update from me. High NK cell activity. Started the intralipids, progesterone and prednisone this week. Feel a bit crappy but not horrendous. I also had an inital appointment with my NHS recurrent miscarriage clinic. They will look into clotting factors but she said that there is usually no single identifiable cause for recurrent pregnancy loss and that I just need to keep trying. I asked her about reproductive immunology and she was quite firm that she thought it was a bad idea and that she felt steroids and intralipids in healthy people is not a safe thing to be doing without prooper evidence - rated red by the HFEA. She tried to steer me heavily away from the approach. She also said wonders why these RI clinics wont release all their evidence and research and is skeptical about why they still havent done so. So just another side to the coin. I found it really jarring actually, that 2 consultants could have such opposing views. That being said I am tired and after 3 MCs I just want to feel like Im doing something. Wondered if anyone else had sought a second opinion or had seen their recurremt MC team via NHS. It can feel overwhelming sometimes!

@pagey23 sorry love for my late reply! I have been on SO for like 7 cycles last year…It didn’t work for me but I think it was because of steroids l…they were too strong for me and that’s why I am on hydrox now. I am enjoying freedom from scans and intralipids tbh!
because of the injection u had u needed to take a month off from ttc right? Are u back on ttc now? Xx

@Auberginesky All the best with your treatment! I think Dr S is very good at what he does when patients have high or active NK cells. I got a second opinion, however, as I don't have an issue with mine, and did a retest with Dr Thum. We spoke last Saturday and he said I only need 5mg prednisolone from Day 10 of my cycle before the transfer, rather than 20mg as Dr Edge said, and no intralipids! Which is a relief, as I am intolerant of soya and allergic to peanuts! (I was on prednisolone for two natural cycles and did not get pregnant, whereas I always got pregnant quickly before). And I agree with @Deerdancer34 to take it first thing in the morning.

@Jecca88 How fabulous - Estepona is just gorgeous! And it is so special to feel the movements! Hope your GD test went well.

@Hopeandfaith1990 Yes, so much better to recycle and use second-hand stuff, and wishing you well for your consultation with Dr S :-)

@Deerdancer34 Enjoy Wales... A beautiful place to be! Wishing you so well for the next cycle.

@Waitingforthesunshine24 That sounds like a good plan. Dr S is really good on most immune issues, but unfortunately, the protocol can be too strong for others.

Unfortunately, it was bad news for us on this second IVF cycle: the 1 blastocyst tested had Trisomy 7 :-( We will be getting genetic counselling through the IVF clinic. Has anyone come across this specific trisomy before?

I have gotten the medication needed to do an ERA test (which is pretty much the same medication needed for transfer, so it's like a mock transfer). ERA test is in April and transfer of the euploid should be scheduled for May, as long as there are no issues... Very nerve-racking!

Last Saturday's consultation with Dr Thum went very well (I went to London to do NK cell and thyroid re-tests at the Lister on 17th March). He suggested 5mg of prednisolone on Day 10 of my cycle before the transfer, and no intralipids (which were prescribed by Dr Edge, and which I was concerned I might be allergic to). It is a much more moderate protocol, as I don't have an issue with NK cells (and didn't last July when I did the first tests with Dr Shehata / Dr Edge).

@Auberginesky I would say take the Prednisolone as early as possible to help with insomnia and have some good podcasts if you do wake up or have trouble falling asleep. I haven't had a problem with insomnia this time but Days 7-10, I often feel quite paranoid/heart beating fast etc - so try and be relaxed as possible, I often go on a brisk walk to help - I'm really bad if I've been cooped up! I also tell my husband to not wind me up during the last few days 🤣 Weight gain, may not affect you, when I took pred the very first time I blew up like a balloon but the 2nd time round and this time round I've been fine. I'd try not to worry too much about symptoms because they may not happen!
I think they give Utrogestan tablets now, probably because most people prefer tablets. I've gone back to Cyclogest pessaries for this cycle because I'm wondering if the Utrogestan made me feel quite sick, I'll let you know next week if I feel less sick this time!
I don't know what to say about intralipids...I can't help but feel a bit dubious about them but then I'm kinda scared to try without...I asked if I had to do them and the answer is 'We wouldn't advise treatment without them' - just guilt trips you in my opinion!
Good luck for this cycle 🤞💪🤗 xx

@Waitingforthesunshine24 and how are you getting on? Hope youre managing to hold your head above the water 🫶

@Jecca88 glad you enjoyed Spain, Estepona is a beautiful place, we go every yearas I am half Spanish.

@Hopeandfaith1990 hang in there, its ok to feel terrified after all youve been through. My mental health is honestly in tatters these days. My best friend just told me she is 6 weeks preg. She wont be doing an early scan and will wait til the 12 week scan. Feelings so sad as my last miscarriage was due 3-4 weeks ahrad of her. Also so envious (but simultaneously happy) that she is so un worried by everything. Im probably more anxious than she is about her pregnancy!

@Deerdancer34 so sorry about your neg test and feeling like crap on the steroids. Any tips for managing the synptoms? I start my prednisone and progesterone tomorrow. Do you know why Dr S prefers tablets to pessaries by any chance? And do you have any insomnia?

So update from me. Just had 2nd appt with Dr S. Confirmed high NK cell activity. Treatment is prednisone, progesterone tablets and intralipid infusions. I had 1 infusion (bloody expensive.. dies anyone know how robust the evidence is because at 400 a pop its eyewatering). I start the progesterone and prednisone tomorrow as I ovulate and can try asap. Im so worried about the potential insomnia, mood swings and weight gain. Is it really that bad?? Any tips to feel more human during these meds?

Love to all

@Hopeandfaith1990 Aww an expectant Mother's Day card, I love that 🥹
@Jecca88 I'm so pleased you had a lovely relaxing holiday!! Ughh I hated the GD test, apparently they used to use lucozade, would much rather have had that!

Really lovely you are both feeling movements 🥰 so special! When are you both actually due!? Tbh I only bought the big stuff 2 months before (purely because I got stuff in a summer sale!) and then I barely bought any clothes because you don't know how big baby will be & you'll be gifted stuff too. I got 1 pack of 0-3months babygrows & then a week before I was due I got some 'Up to 1 month' babygrows off Vinted (Vinted is incredible for baby stuff- highly recommend!)

I'm on my 8th Cycle...got that hope again but feel nervous... Going to see my parents in Wales on Sunday in hope its a good distraction! Lots of love to all 💓

@Hopeandfaith1990 that's good - about donations - always best to recycle too and saves you money.

Where will you look at going? might even be nice to do a staycation not too far?

I am seeing Dr S on Monday too - hopefully to be signed off from the clinic. But haven't seen him for over two years.

Got my GD on friday - not looking forward to it.

Hey @Hopeandfaith1990 yes you should look at booking something. I got the all clear from midwife and fit to fly letter. I did look at hospitals for sanity and got the GHIC card - as maternity care is free in Europe. Totally know what you mean about movements, tbh - the consistency has only really just started - so don't fret or track them till 28 weeks -32 weeks.

We have been given loads of stuff from Sister in Law, my mum kept loads from my nieces and nephews - the only things we need to buy are the buggy and my husbands work have very kindly offered to buy it for us. I know what room the baby will be in - but still holding off buying anything yet, but we may decorate it neutrally next month. Do you have people that will donate stuff to you? it made me feel a bit better rather than purchasing myself. Althought opening the boxes and going through baby clothes is kinda mad. We had our first gift from my husbands boss' wife on holiday - some little newborn babygrows and it just so sweet to be in the position that people are buying us stuff for once, but also there is this added pressure that people assume it will all go right. Still can't get used to the idea we are having a baby.

Hey ladies,

Back from my week away in spain @TammyinCork we flew into Malaga and spent a few nights there and then onto Estepona along the coast.

Had such a nice time away - felt proper relaxed for what feels like the first time in forever. Could feel him move loads and reached the third trimester. I am 28.4 weeks now. Had a scan with the NHS yesterday and got a 3D image of his face which is incredible to see the features - i honestly cannot believe i am here, feels so unreal and i am so grateful.

How is everyone? welcome to the new ladies, sorry to see you here but we are super supportive and this has really been a lifeline for me.

@Hopeandfaith1990 you have made it to 22 weeks :) Hope you're mental health is ok, totally know what you mean when anyone announces their pregnancy if triggers me. I don't think I will never not. Recently i have been supporting a good friend after a miscarriage which has been pretty tough and i want to be there for her but its quite intense and she is really leaning on me.

How are you doing @Deerdancer34 ?

ohh that’s amazing so happy for you!!
what was your diagnosis and treatment plan? Xx

I have started bleeding this afternoon so it’s all over rover and new cycle has begun. I am glad to be honest as tests being negative just wanted to get cracking. Did I read above right that you are pregnant? 🥰 congratulations and how many weeks etc? Hopefully you don’t find me too nosey and intrusive I am just interested in everyone journey but realise to read all of the thread I would probably be here all year 😂😂xx

if anyone has experienced this, after stopping progesterone how long did it take for bleeding to start? X x I stopped mine day before yesterday x

Hi there,
6-8 weeks I believe. Initially he told me to miss a cycle of trying so the medication had time to work. I should have expected this to happen it just still hurts when it does doesn’t it. Part of you still hopes it won’t happen.
The whole progesterone thing has fried my head a bit because now I know for sure no bleeding doesn’t mean everything is ok as the progesterone masks it. I would be interested how others manage this. I can’t imagine getting to the reassurance scan and being told there is nothing there. So do others do a test to see if they’re still pregnant or progression testing?
Sending you lots of love x x x

@Deerdancer34 thanks for sharing. It was really helpful to hear about your protocol and his rationale for super ov. Rooting for you you - rooting for all of us 🙏🩷 Ill let you know what my protocol ends up being

@Waitingforthesunshine24 thanks for sharing. How long does he usually want people on hydroxybefore getting pregnant? Im so sorry youre going through this and I can relate to the relief of seeing a negative pregnancy test before it all happens - kind of messed up really but knowledge is power 🥲 hang in there, I am in a constant black cloud these days and it is heavier immediately after my losses - its so so hard. One foot in front of the other 🩷

Hi all, I am new here! Hope it is ok for me to join. I started a post the other day on Hydroxychloroquine and was kindly sent a link to join here.
I am 38, history of Graves Disease (been in remission for 2 years) and now 3 losses in 3 years. I have one son who is 6, I saw Dr Shehata on NHS. I am on his protocol of Hydroxychloroquine, Cyclogest and Aspirin. All blood test were ‘normal’.
But he thinks some immune activity is causing the losses.
I had a positive pregnancy test 2 weeks ago but didn’t start his protocol until 2 days later. It wasn’t intentional it just happened that I was pregnant at the time I went to see him for the protocol but I didn’t know. I had hope but today did a test and was negative so I believe was a chemical pregnancy but the progesterone has been masking the bleeding. I haven’t had any bleeding yet.
I know it didn’t have time to get into my system properly so I can’t expect miracles but you know how it is. You get those lines and can’t help but dream. But realistically the medication needs time to settle in, so I shouldn’t be surprised this has also ended in loss.
In a way I am glad the test is negative today because it would have been worse to go to first scan in 2 weeks at 7 weeks to be told there is nothing there. After being hopeful due to no bleeding, oblivious that progesterone masks it and pregnancy still not progressing.
Thanks for reading, I know I should have expected it but I feel flat tonight and need to pick myself back up and carry on.
Sending love to you all and thanks for joining me to the thread x x x x

@pagey23 I'm not sure what to suggest, I'd be tempted to take the meds but then if they want your hormones to rebalance, maybe its best to take a break? 🤔

@Auberginesky Welcome and so sorry you have to be here. I'm so sorry for your losses, we're a very supportive bunch - literally been a lifesaver for me, so hopefully you can feel a bit of support here 💓
I'm not sure of all the different protocols but I can tell you what I followed if that's helpful?

The first time I needed to have 2x Humira injections because some of my NK cells were high - that meant I had to wait about 2 months before I was allowed to try - frustrating but Dr S is all about preparing your body for pregnancy... I then tried for 3 months with just medications (intralipids + Prednisolone) and then to help speed the process up they talked about Superovulation. You take letrozole Days 2-6 to produce up to 3 follicles, you then have a follow up scan to determine when to trigger and when to dtd. After years of losses it took a lot of stress away and basically boosts your chances as you usually produce just 1 follicle.
This time I didn't need Humira and have gone straight to Superovulation and doing intralipids, Prednisolone & Hydroxy.

I'm not sure how clear this is and tbh I still don't really understand all the NK cells etc. Do ask if you have more specific questions. Sending you so much love ❤️ It is such a dark place but the one thing that Dr S gave me was a plan and hope 💓