Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

@Fletchasketch my partner also had his sperm tested, which all came back normal. We just tested everything to make sure we covered all basis so we didn’t have the what ifs !? CRP will accept bloods from previous clinics and NHS as long as within like 6 months to a year x

Hi all, just catching up.

@v60 gentle congratulations, and fingers and everything crossed that this is the one for you. I completely understand guarding your heart, after everything you and sadly most of us in this thread have been through it makes total sense. In my last pregnancy I genuinely thought pretending I wasn't pregnant was the healthiest way for me to cope - so ironic after YEARS of yearning for it lol. I hope you're doing okay xxx

@Gizmo1983 sorry you've hit another setback, absolutely not what you need. Its so frustrating when things just seem to go wrong for no reason. Hoping you are able to move forward this cycle. xxx

@Jecca88 glad your procedure went well and you don't have the additional worry of ashermans on top of everything else. Hoping you are feeling physically okay xxx

@Meg310532 I know its not the same but when I had my recent MMC at 9/10 weeks I weaned off the steroids and felt like complete shit. But similarly to @Jecca88 I was obviously not in a great place so it was most likely a combination of everything. But I've read that they repress sickness and symptoms so it makes sense that you feel crap coming off them. xxx

@Fletchasketch So sorry you're in this group but I recently found this thread and the shared experience is comforting in a bittersweet way. Re your first appointment - is it NHS or private? Once I was pretty deep into this journey I created a (physical and electronic) folder and started organising all my results/appointments/procedures so that I could try and get the most out of all appointments. Your first one will probably be a detailed history (general and fertility focussed) of you and your partner. I'd already had basic bloods like you but then went for a huge round testing a lot more - inc NK cells, blood clotting disorder etc. Those took a couple weeks to come back then I had a follow up. To get the most out of your appts, I'd recommend organising your notes/medical history as much as you can and going in with a list of questions. Also discuss with your partner the things you want to clarify/ask so that if one of you forget you can remind the other etc. Also ask for the cost of each stage. Good luck xxx

@Meg310532 That was my thinking too,I think we'll probably test for everything. Are you expected to decide what tests you want and have the tests there and then? I'll only be 8 days post ERPC on Wednesday so will probably need to wait until I'm testing negative.

@Hopeandfaith1990 thanks for the tips, definitely a good idea to keep a record as I'll be on my own too. Speaking of which, do most people take their partner for appointments? I'm still on compassionate leave, so no problem for me but harder for my partner. I'm going private as have 'only' had two miscarriages and at 41 I'm not prepared to wait. Thanks for the good wishes.
Xx

My partner has come to most of mine - its really tricky as I never know if they'll be 'important' or not (or specifically need him there). If I know its just blood tests or minor procedures then I'll go alone but tbh I like to have him there because he's good at asking questions I'd not thought of etc. For the initial consultation I would imagine you'll probably want him there. Has he had any testing done as they might ask about that too. My partner has had basic SA x 3 and DNA fragmentation and semen microbiome test too xxx

@Hopeandfaith1990 good to know. He hasn’t been tested at all yet, but I think it’s a good idea that he i too. Won’t be able to come to the first appointment, but will definitely think about it for future ones.

@Hopeandfaith1990 Ahh thats crazy isnt it that they can mask all the pregnancy symptoms. I am now down to 3 and I definitely feel more tired, so i rek the steroids were also masking the tiredness too.

@Fletchasketch yes hun they will do all the tests on the same day as the consultation, it just avoids the extra travel for you too if you decide on the day. I reckon you can go off and discuss it and then come back later that day if you didn't want to make the decision there and then? we went into the waiting room with the bit of paper and then we went through it together and ticked the boxes to the ones that we wanted.

my partner came to the first appointment, he didnt come for the follow which i had on zoom to find out the treatment plan, and then he has come to majority of scans, he didnt come to the 10 week one and wont be coming to the 16 but took my sister and my mum will come the 16 week xx

@Meg310532 thanks, really good to know. I am jumping the gun a lot here, but do they insist on all the scans? Having had bad news twice now and being pretty traumatised by them I’d rather minimise scans and not go before 9 weeks. I’m luckily only a 20 min drive away so not too bothered about travel time. Hope you’re doing well today and thanks again xx

@Fletchasketch they do unfortunately, and they will only give you enough of the medication to last you till your next scan as well. You have to go in for the infusion from a positive test too. xxxx

Oh well, good to know in advance at least. Thank you x

Hey guys lots to catch up on

welcome @Fletchasketch so sorry you are here, but you're in good hands. Good luck with DR Edge, they might not do all the bloods until you have had a period return as you levels may be elevated, but it will be great to get an idea of next steps and prices. I take my husband to every appointment as you do get over loaded with information and his work have generally been quite good with the time off, but i know its not the same for others :( I saw in the news for every miscarriage under 24 weeks - businesses should offer 2 weeks leave for both parents. Not sure if its defo approved but on the right step. I also know exactly what you mean about scans, they are horrible and the scaniexty beforehand is overwhelming, but they do insist on it.

How are you doing @v60 ?

@Gizmo1983 hope the migraine has gone and you're feeling ok/

@Hopeandfaith1990 really hoping this is your month :)

@Meg310532 how is the weaning off the steroids going? are you feeling any better?

Hello all, thanks again for the tips on what to expect, they were so helpful. The appointment went exactly as you said, Dr Edge was lovely and so reassuring. As expected, I need to wait a week or so before doing any tests, so will chat to my partner and then hopefully go back next week. Luckily she was happy to go with my previous hormone tests, so the cost is slightly less than expecting, but still almost 3K.

Feeling slightly more like myself today and the appointment has definitely helped with that, as have you all.

I hope everyone is having a good week and sending hugs to anyone who needs one. X

Glad to hear you had a positive experience today @fletchasketch. Makes all the difference when someone listens and is reassuring. And takes finances into consideration!

@Jecca88 I’m doing ok thanks, trying not to commit myself to the idea of being pregnant, it's helping so far. Yet another person at work has announced her pregnancy. She’s quite far along and absolutely tiny and perfect with it and I’m feeling totally blimp like with bloating and steroids. How are things for you at the minute?

Glad it went well @Fletchasketch and that you have a plan going forward, will be interesting to see what your results produce.

@v60 i am doing ok thanks, waiting for my first period and will resume the hydrox and then will start trying again in May and back to waiting game. When is your first scan? Where are you based again? ahh i totally get you with the perfect pregnancy. I watched real housewives of cheshire (shamelful guilty pleasure) and someone announced their perfect pregnancy, i nearly threw something at the TV.

@Jecca88 thanks for the kind words and glad to hear you're doing okay. I know what you mean about perfect pregnancies, my SIL announced at 6 weeks before she'd even had a scan- hard to imagine that level of confidence!

A qq for all, I've had the list of pre-conception supplements and seems my proceive max is woefully lacking. The list Dr Edge provided seems excessive though- especially the 600mg of coq10. Is everyone else going with the full list and if so, have you had any side effects? Any guidance welcome.

Hope everyone is doing okay and has a lovely weekend when it gets here

I’ve been taking 600mg CoQ10 for almost the entire time I’ve been TTC - no side effects (that I can notice) and I’ve conceived 5 times. CoQ10 is mainly for egg quality - do you have an ‘okay’ AMH level?

my other recommended supplements are [Inessa] prenatal, omega 3, 2000mg vitamin D and I also take probiotics. Obvs all the medication too but those are the main supplements xx

Thanks, good to know that you’ve had no side effects. My AMH is 11.3 which I’m told is good for over 40, but I guess that’s no guarantee of quality. I think it was more that in Boots the super strength is 100, so this dosage is six times super, but if it works then it works!

@Jecca88 im feeling okay hun, I’m down to two now, should be totally off them by next Saturday. Feeling a bit nervous about not having any steriods in my system !! When is CD1 due ? Are you feeling okay about starting everything again??… how are you feeling in yourself ?? I have been crying for the last few days watching Jamie Laing do 5 ultra marathons , have you been watching ?????? X

I take this one - each pill is 300mg so you only have to take two :)

Woops - link https://www.amazon.co.uk/dp/B08T12JK1T?ref=ppx_yo2ov_dt_b_fed_asin_title

@Hopeandfaith1990 thanks, that’s a really good price too!

Hi all, hope it’s ok to post. Have been following along for a while. I’m so sorry to read about everyone’s losses and difficulties- I’ve had 3 miscarriages in the last 18 months so can very much sympathise with how hard loss and conceiving after loss can feel.

I’m lucky to currently be 9 weeks pregnant- the furthest we’ve ever gotten as all previous losses were between 5 and 6 weeks. The only difference this time is I have been prescribed Prednisolone 20mg by my private consultant (not Dr Shehata, but had an appointment with him lined up in my mind before the surprise of getting pregnant this time!). My question is for those of you who have been on Prednisolone, at what point did you start weaning off? My consultant has said after the 12 week scan, but I’m certain when I first saw her she said to keep going until 14 weeks and wean off from then. I know it’s only 2 weeks, however given my previous losses I’m anxious to do the best thing- but don’t know if that’s at 12 weeks or 14 weeks! I’ve emailed her to clarify but really interested to hear other people’s experiences.

Sending lots of love and hope we all get our happy endings!

Hi ladies so sorry I went awol for a bit, at my last scan that bit of retained tissue was still there and my womb lining was very thick. They had me all set up for endometrial hyperplasia and the thought of that was just destroying my brain so I kind of just shut myself off to everything, I just couldn’t cope with even more setbacks. Anyhoo after a very heavy period I had a scan today and I’m soooooo happy that the thick lining and that last piece of retained tissue has finally gone. After 6 months I am free of retained tissue. I almost cried in the scan room 😂😂😂😂.
@Jecca88 hey sweet how are you doing xxx
I’ve just caught up on the post and am so happy to be back. Just had our Karyotypes tested today so will see what that brings although I’m very sure it will come back ok since our last 2 losses were genetically fine.
we have 4-6 weeks to decide whether to go to the donor route or some more normal ivf. Or by some miracle get pregnant naturally 😂😂😂.
@Jecca88 i actually had a mummy pig cup in my cupboard ( for Mother’s Day off my chihuahua 😂) and I told my husband to hide it as I can no longer look at her 😂😂😂.
much love to all

Hi @gingersnap2025 sorry you've had some crappy experiences too, but gentle congratulations about being pregnant now. I have everything crossed for an uneventful, boring, long and mundane pregnancy for you!! 💕

My plan says to wean off the Pred at 12 weeks. You wean off by 5mg every 5 days so I reckon you'd actually actually be more like 14-15 weeks by the time you're completely Pred free if that makes sense?

If you're anxious (if - who am I kidding!) I'm sure they would let you stay on it until 14 weeks for peace for mind as long as its safe for the baby. People who take Pred for other conditions (arthritis etc) I imagine would be on it (to some degree) their entire pregnancy. xxx

Welcome @gingersnap2025 and tentative congrats. Sorry can’t comment specifically re the timing of pred - I haven’t crossed that bridge yet

@Gizmo1983 lovely to see your name pop up and happy to hear about your lining. Progress. I’d have flung that mug in a rage, well restrained of you!

@fletchasketch I took coq10 until my positive test, I think it was 600mg. My consultant isn’t bothered and doesn’t advocate it one way or the other, I think I read about it in “it starts with the egg”.

@Jecca88 I don’t know much about hydroxy - have you been on it before? No idea about first scan, I’m not being very proactive, they just make me so anxious. I’ll have to get more meds in a week or so and I guess it’ll be then.

Just wondering if anyone has come across antihistamines on the protocol for reducing the immune response? Fallen down a rabbit hole and wondering if it’s worth throwing into the mix.

Hey ladies,

@Fletchasketch - i know the vitamins are extensive and expensive. I actually buy them myself rather than from the clinic as it works out cheaper. I do follow it and have been for the past year and a half. They don't specify how much Vit d to have or Omega 3. I take 1 pregnacare and 4000 IU Vit D, and 2000 mg of omega3, I take two 300mg of CoQ10 and then 75MG aspirin after dinner. I don't think i have had any side effects. @Hopeandfaith1990 i buy that Co-enzyme too :)

@Meg310532 yess watching Jamie was emotional, but anything can really set me off tbh, i saw a random dog i followed had died on insta and burst into tears - my husband was like what has happened?? I have just been away for the weekend and started my period and its finally a good heavy flow, so glad i am back to 'normal' Gonna start the Hydroxy today again and need to have it for 6 weeks before we try. So hoping to have my first intralipid pre ovulation end of april/ beg of May.

@gingersnap2025 welcome and gentle congrats. I was always told you start to wean off 12 weeks. I am told to be on it till 14 weeks as a couple of my losses have been later losses. But generally i think 12 weeks you start to wean off.

@Gizmo1983 yay to the lining and the products. I also have had a proper period now and feel such relief. have you got any nice plans over 4-6 weeks to have some time off to proper reflect on how you will move forward? maybe even a night away :) Ohh your karotyping tests - is that for everything? where did you get them done? We are still waiting on our results but they only tested for Trisomy 21.

@v60 yes been on Hydrox for almost the entire time since joining the clinic - so year and a half and i had zero side effects, except i didn't get ill much which is weird as they are immune suppressant. I listened to DR Shahata on this podcast and he said when he had covid he took Hydroxy and recovered well. Its the same drug that Trump was pushing in America during covid lols. Fair enough about first scan. At CRP the scans are essential and you can't progress unless you had had them at 6,8,10,12,16,20 weeks. I have read anything about antihistamines tbh :(