Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

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 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.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

@zoe16 thanks for adding me!

I had a question but I think @HarrietM87 has answered it for me. I had my little boy after treatment with Mr Shehata in 2018 and now find myself accidentally pregnant (which feels so utterly ridiculous to say after the journey the first time!!).

I’m taking all the over the counter medicines he recommended last time (vit d, aspirin etc) but hadn’t booked an appointment with Mr S. I was hoping to hear some successful 2nd time stories without treatment but guess I need to prep for the worst.

@HarrietM87 I’m doing okay thank you - AF showed up this morning as expected 😢 and I had BFN everyday - I waste so much money on FRERs 🙈😂 How're you?

One more cycle before I’m back seeing Dr S after trying for 6 months since he added hydroxy in too and I’m thinking of asking to try Super O or just booking an appointment at a clinic to see about IVF 🤷🏻‍♀️ It’s been over 2.5 years (I truly appreciate that this isn’t long for some people) and other than 4 early miscarriages we feel like we’re no further forward in starting a family 💔 At 28 people keep telling me I’ve got time or I’m young but at any age this is brutal. We’ve been married 6 years this year, together for 14 and I always envisioned a honeymoon baby (although we made the decision to establish our careers first) and that I’d be a mum well before I was 30. But as it gets closer I’m realising that isn’t going to be our reality and questions of ‘why me?’ and ‘why is this so hard?’ weigh me down 😔

Sorry for all my Thursday morning ramblings, I hope everyone is doing okay? xxxxx

I'm currently experiencing my 3rd chemical on Dr. Shehata's protocol (pred and progesterone)
Has anyone had several miscarriages ON the protocol but still had a baby? Did you do anything different?

I feel so lost. Will I ever have a baby?

@user1469533576 I’ve not had several but my last miscarriage was under Dr S whilst I was on the Pred and Progesterone. He then added in hydroxy which I had to take for 6-8 weeks before I could try again and since then it’s been 5 months of trying and I haven’t fallen pregnant yet. Have you got a follow up appointment with him booked in that you could ask what he’d recommend?

I know exactly how you feel 😔 just hang in there. Sending love xx

@Wishing5tar I’m sorry - that’s so tough. I think you should definitely ask for SO. I just went straight in with it this time because it increases your chances of pregnancy so why not. It worked for me first time with my son, but I’ve responded differently to the meds this time and it hasn’t been so easy. Mr S said it’s likely the difference in my age (I was 31 then, I’m 33 now - didn’t think I was over the hill!) so now I’m feeling really panicked about it. Day one of AF here too.

Hi everyone, I’ve been lurking for a while as still trying to get pregnant, everyone was really helpful when I joined thread last year.

I’ve had 5 mcs (3 before my daughter & 2 post her) and saw Mr S last July & all my test results were totally normal. We’ve been on this journey for nearly 6 years...

I’m under my consultant in Bristol at the moment as he does a similar plan (hydroxy, pred, prog) but we have not been pregnant since last June & I’m starting to think about alternative options.

I talked about SO with Mr S last summer but wasn’t keen as we wanted to see how things went for a bit but now I’m wondering if I should try. Could anyone tell me how many times I’d need to go to Epsom in one cycle?

Sending positive vibes to all the pregnant ladies & keeping my toes crossed for everyone else xx

Hi girls, sorry was off the board a few days there as work has been so mental and just had no space left in my brain for anything else!

@Crystal2020 I know how you are feeling with the waiting, driving me mad waiting for these results, just want to know what is going on! You must let us know how you get on with yours?

@Eeviee I'm based just outside Glasgow, hopefully the journey up and down will get a little easier as time goes on and I know where I'm going? What about you? Have you been on the treatment plan for long?

Those whos husbands have had the sperm fragmentation tests - how is it they treat this? Is it just through diet/lifestyle? I have so much to learn! I think it's me that has the problem as I'm a not older than him, but thought it might be worthwhile having the hubby tested aswell just to be on the safe side x

Hi @Luckyducky2 I know, next week can’t come quick enough. Definitely keep us posted on how you get on & I will too.

I do think the DNA frag is worth checking while you’re getting everything else tested. Hopefully it would just be a case of ruling it out as a potential issue.

When we did our initial fertility tests my husband was given a pat on the back and told he was great because his standard sperm test results were so good. And it was really hard to get him to make lifestyle changes after that as he didn’t think he needed to do anything. However, his DNA fragmentation was high when we eventually had it tested.

He took an antibiotic initially as they wanted to rule out any sort of infection as a possible factor. Then it was all down to lifestyle. He was allowed 1 drink per week and started exercising again, eating healthily etc. It took a while to resolve but we got there in the end. X

Hi all,

Finally found the new thread :)

Hello please can I join? X

Just a question for anyone doing IVF - did you stay with Dr S for the immunology side of things or move to an IVF clinic that includes it? I'm so confused about how it works and I'm trying to avoid the cost of all the tests again.

Care London, the Lister, ARGC and CRGH have all been recommended but have no idea which way to go as we need help with the embryo AND implantation.

In the last year I've had two chemicals, a loss at 7 weeks and one at 6 but that never really got off the ground or tested above 1-2 weeks on CB digi. So far our only diagnosed issues are my over-active killer cells and husbands DNA sperm damage. We just don't seem to make good quality embryos. I'm 37.

My FSH is also between 10 and 12 so I don't know if ARGC would have me!

Any advice would be really appreciated?

Hi @elc19 So sorry you find yourself here, hope you're doing okay?

And can I just say how grateful I am for everyone on here and for all your help. I literally have no-one else to chat to about this stuff what with being in the crappy 1% and all. Being able to come here and share the hell and happiness has been such a lifeline. Thank you ❤️ xx

Hi ladies! Thanks for restarting the thread @kittykatsmile :) Sorry I've been very quiet for a while. I've been bogged down with work and trying to keep myself going with my strong pregnancy symptoms as I now find it hard to keep anything down. The tiredness has subsided. I'm not complaining though. I finally reached 20weeks and everything is fine with the little one. I think I can now relax although the little niggles are still in the back of my mind albeit are much further away in my mind. And baby has started moving which is reassuring.

I still can't believe I've made it this far after 6 losses as I couldn't have dreamt it this time last year and its nice to see other ladies pregnancies continuing on. @zoe16 and @Mairmum18 I'm still on pred but down to 5mg/2.5mg on alternate days. I was on 10mg for about 3weeks and I suffered awful withdrawal symptoms which really scared me but thankfully they have subsided. I can't wait to be off the stuff as my consultant's weaning programme is much longer than Dr S's.

I have seen we have some new members, welcome to the group ladies! It helped me so much knowing I wasn't going through this journey on my own and there is so much information for everyone all at different stages. My journey on pred started at the beginning of last year where I experienced 2 chemicals and then decided to start acupuncture due to altered cycles. This seemed to work for me as the first cycle on acupuncture got me a positive which stuck. I am still on acupuncture but rather then every week I'm every couple/three weeks. The talking also helped immensely as bottling made things so much worse for me and DH. This thread was a god send! And the mantra by @kittykatsmile "today I am pregnant" helped me in the early days of pregnancy.

I hope I haven't blabbed on too much! There are so many messages to catch up on. I can totally understand the heartache of negatives and trying to pick yourself back up. We go through so much as it is so bloody hard and feels so unfair! I found that I had to stop for a while to reset, went on a few holidays then was able to start again. Also started a journal which I still write in. Anyway of talking and letting it out made it easier to deal with although you never forgot you soon learn to deal (albeit battered and bruised!).

Its my birthday tomorrow, this time last year I was mourning the loss of my 5th. Wishing us all the luck 😘🍀xxx

@mezgaski for SO you have to go to the clinic once usually, CD9-12 to have your follicles checked and get the trigger shot. I think if you don’t respond/respond slowly to the letrozole they might want you to come again to check on progress, but that should only happen when they’re adjusting the dose, and it’s never happened to me.

@williteverhappen your post really made me smile today and for the first time has given me some hope that things can change. Happy birthday for tomorrow and all the best for the rest of your pregnancy.
@FrannyAnny82 My IVF clinics abroad will do steroids treatment alongside but I think I will ask Dr S for his protocol and pass it over for comparison or vice versa. One thing that popped into my mind is that I have read that a lot of woman who have miscarried on the plan where then prescribed hydroxy by Dr S ... I'm wondering if I should ask DR S if I should be given this now just in case. I also know it takes a while to kick in so now would be the time. Any thoughts on this?

@FrannyAnny82 I haven't seen Dr S but from what everyone says here my IVF clinic's protocol is very similar to his. I'm at the same one as @KittyKatSmile - Zita West. We can't conceive naturally so went there originally for straightforward IVF, but then After two MMC found we needed help with staying pregnant as well. Currently 15weeks, fingers crossed we'll get there this time.

And they accept tests from other places - we had a load of NHS results that they were fine with, we didn't have to redo them except for the HIV and hepatitis ones which are only valid for a certain length of time.

Thank you @HarrietM87 that’s really helpful. I’m taking a deep breath today though as just a faint bfp at 11dpo this morning. 6th time lucky after nearly 6 years?!!! I usually get to 6-8 weeks and then there’s no heartbeat on a scan so early days are so hard as not bleeding doesn’t reassure me at all. What does everyone do with exercising? I’ve been running regularly & I think it will be good for my mental health but maybe jigging up and down isn’t good? My last 2 mcs I stopped exercising so I thought I’d change approach this time!

Happy birthday for tomorrow @williteverhappen

Hi to everyone else xx

@FrannyAnny82 echo what @ginandtonicformeplease says. I went to see a few of the ones on your list as well as Zita West and went with them in the end largely because they were very laid back about taking the results from Dr S and replicating his protocol. For your own mental health I wouldn't go and see ARGC; they are horrible and really quite insensitive. They will also insist on doing all tests again and have been in trouble in the past for gaming their results. My best friend is pregnant after ICSI at the Lister and she liked them.

@williteverhappen hoping that your anxiety continues to drop. I felt a lot better after 12 weeks. 3 weeks to go now.

Lots of love ladies x

Hi ladies,
Please help! So I've ovulated early and wasn't due for trigger shot til tomorrow. What do I do? I can't do the trigger til tomorrow as I'm away for the night and left it at home.
CB digital is showing static smiley! Why does it happen to me on a weekend???

@mezgaski that's great news! I hope this is the one for you, sending losts of positive thoughts!! I stopped excercing once I got my bfp as I used to gym and run on a daily basis. My main reason for stopping was down to pain due to fibroids which really flared up in the first 12weeks, causing bleeding. They've now stopped growing so have upped exercising very gradually only recently (I've missed it!). I know a lot of ladies here have continued with their exercise routine so I really don't think it makes a bit difference. You could just do less than you used to? Lots of baby dust to you 🍀😘xxx

Thank you for the birthday wishes all! We are in Berlin for a few nights ☺xx

Wow!! @kittykatsmile I can't believe you've only got 3weeks left!! This is very exciting, hope your move back home has gone well (I think you mentioned you were heading back to Guernsey) xx

Thanks @Ultra26 @ginandtonicformeplease @KittyKatSmile Zita West is a good shout, I really don't want to have to repeat all those tests!

Everything crossed for you @ginandtonicformeplease 15 weeks is amazing! It sucks so much doesn't it when you think you've got one problem then discover there's even more to deal with!

@Ultra26 I'm definitely going to ask for the hydroxy and everything else he has in that armoury of his! I'm not seeing him until late March. Let me know how you get on.

Happy birthday @williteverhappen and congrats @mezgaski!!

When not pregnant I do standard classes - body combat etc. When on the steroids I down gear to ballet barre and swimming and when I'm pregnant I just take light walks because I get so scared. Obviously none of this is based on science, just my own paranoia!

Good luck, have everything crossed for you!

Thanks @williteverhappen. It’s helpful to hear what others do re exercise. I hope you had a fab time in Berlin! It’s a great place, I love the history.

@FrannyAnny82 thank you. Previously I’ve done nothing but I hope that keeping up with some steady running & body balance might keep my stress levels at bay.

I had my first ever intralipids today in Epsom. It was actually quite relaxing! Feeling positive I’m doing something different & also that I’ve got in early with them at 4 weeks 🤞🤞

Hope everyone else is ok x

Hi everyone

I don't know what autoimmune condition I have, have had lots of tests done all I know is I have chronic angiodema, I've lost 8 pregnancies and my last pregnancy was treated with Prednisolone, clexane, aspirin and progesterone.

Feeling really deflated xz