Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

Hi ladies!

I’ve had four miscarriages in the last 18 months. With the last one I was on hydroxychloroquin, aspirin and cyclogest under the RMC at Epsom / St Helier. They had mentioned putting me on prednisalone but were against it due to covid and it suppressing my immune system which I was upset at as I was willing to try anything at that stage. I finally now am allowed to try the prednisalone but am worried about the side effects. Please can anyone give me hope that this does work and did it work after first time use or did it take a few attempts…

@Everhopeful35 and everyone else hiiiiii. I realise this post is a bit old but I came across is after
I just had my second failed fet at argc but 16th failed cycle in total. Im still working my way through reading it all but managed to get some helpful info. We did ivig this time and intralipids in December. I think they will suggest humira next time so I saw that you mentioned buying humira for £250!! Can you please share where it was from as everywhere I have enquired is almost quoting £1000!!!!!! We are on our last embryo now and have no more money to afford a fresh cycle and with immunes it is so expensive I'm even more stressed out. I hope everyone else has been getting their bfp and staying strong x

@Obrienlk sorry to hear your experiences, it's so tough. I had my baby on Monday, after prednisolone and cyclogest. I didn't have any tests though so I don't know what the problem was, but this was pregnancy number 4 in just over a year so there must have been something going on.

You might not get all the side effects. I didn't - I was able to sleep well and the only side effects I got were wanting to eat everything in sight, rapid weight gain (which evened out after I stopped taking it) and a moonface, which again went down when I stopped taking it.

I don't know for sure if it was the pred that gave us our baby, but I strongly believe it was x

Hi Daffodil21! Firstly huge congrats on your new little bundle! Did you have a boy or girl? And Thankyou so much for posting and giving me some hope! Was it your first baby and was it your first attempt with the prednisalone? Did you take hydroxychloroquin too? Hope you are enjoying lots of newborn cuddles and not too many sleepless nights! X

Hey @Obrienlk I'm sorry to hear that treatment didn't work for you. I'm on the same treatment plus intralipids and my big fear is this not working and me not being allowed prednisone (I'm unvaccinated so far). I was referred to St Helier RMC in January but still haven't had an appointment through so glad we ended up going privately.

I haven't personally tried pred but lots of ladies on here have had good success with it, and I have a friend who miscarried on hydroxy and then went on to have a successful pregnancy with pred. She's due to give birth any day now!

I know they're not popular on here but I thiiiiiink I just found a heartbeat with a home Doppler! I took a little recording of it so that I won't feel tempted to use it all the time and stress out when I can't find it. Still dreading my scan and being told it's bad news next week but i possibly feel a teeny bit more hopeful after that!

@treesall How exciting, I didn't even know about home dopplers.

@Kelspj Do you know whether Dr. Tozer would also test level 2 immunes or what her general view is in regards to NK cells? Good to hear that she is not pushy. It's so difficult to decide who you are going to see.

I had another blood test today. I think they took ten tubes and the nurse said that she has never taken that many in one go. :D Can't wait for the results.

@Annabell1 - hey! Yes I do believe she tests NK cells and I think I read in another group somewhere that it’s around £505, I don’t know what her overall view on it is but she just encouraged me to start of with the more basic testing to save some money and she hopes I will be okay on this protocol, I keep thinking I should of done more and tested more but hopefully this protocol works out for us and we would of saved some money too x

@Kelspj Hey! :) Thanks for your feedback. Yes, it's difficult to say with all those tests out there. But hopefully you will be perfectly fine with the treatment she suggested. x

Hi @Obrienlk - yes this was our first baby and he's a boy :) no, I just took pred and cyclogest. I had taken them on the pregnancy before as well other medications (high dose folic acid, clexane, metformin) but I didn't start taking them until about 5.5 weeks and I think it was already too late by then x

Hi everyone,

I'm back at CRP for my 3 month review and more ovulation intralipids. I will need to rob a bank at this rate 🤣. We have always got pregnant straight away before which after 5 miscarriages was the one positive. Typical now we are paying huge amounts of money we are struggling. I was going to ask about superovulation tomorrow. It will be day 2 of my cycle and so hoping they will let me start the meds as I am aware its usually cycle day 2 in the morning? I am also going to ask about being prescribed clexane as with our 5th pregnancy I was on this and it helped implantation after a PUL and 2 chemicals previously. The only other pregnancy that implantation was our first. Had anyone else been prescribed clexane by CRP to help with implantation? Is there anything else anyone else can suggest to me to ask? Really want to make the most of this cycle.

@Venustarr fingers crossed you get your results soon 🤞

@treesall thinking of you today

I hope everyone else is ok

Xxx

@Rainbowdreams1983 I have just left CRP, perhaps I saw you there! I hope all goes on today.

I have just had my 10w scan (at 9+6) and all is looking ok. Just paid for the harmony test and neucal scan in 2 weeks and feeling bankrupt now!! They did put pics on my usb this time, yay!

Oh @treesall I'm so glad! 🥰 Did you see Mr S today? Oooh I hope you enjoy the rest of your day ☺️❤️. Will you sort your booking appointment now...? So pleased for you xx

@Rainbowdreams1983 argh the money is insane isn't it. What protocol are you on? I've always felt like a rabbit in the headlights at appointments, forgetting everything I wanted to ask then thinking I'd spent £££ on a 5 minute chat. It's good to be prepared with all your questions. I hope it all goes well.

Hope everyone else is doing okay xxx

Thank you @ginandoreos. I'm so so so pleased. I know we aren't out of the danger zone yet (and I can't imagine I will ever relax I again in pregnancy until I have a live baby in my arms) but I do at least feel like we have a chance of this working out now!

Yes I will do the self referral now for booking in. I feel like it's tempting fate but I am going to have to go with it anyway. 😬

Hi Daffodil! Thanks again and can I ask what Clexane and metformin are supposed to do? I’ve not heard of them…

So happy for you @treesall. I know what you mean it’s such a worrying time…

@Obrienlk the metformin was because I'm pretty sure I have pcos and the clexane was a blood thinner in case I had a blood clotting disorder. I had the NHS tests which showed I didn't have this so I didn't take it for this pregnancy.

@treesall so pleased for you! I felt like that too when I booked my appointment x

Hi ladies. I'm wondering whether anyone can help me out - I have a friend having ivf and she is with a terrible fertility clinic who have given her bad advice constantly. Last week she went in and they said she was miscarrying as the sac was being reabsorbed back into her body at 6 weeks.. so they told her not viable. She had a few drinks this weekend, went back in this week so they could see whether they needed to start medical management and lo and behold, she has a 'perfect' heart rate for 7 weeks but they're saying she's measuring too small and that she's still going to have a miscarriage but there is a 5% chance. The thing is, we can't find anything on the internet about strong heartbeat and slow growth, it just doesn't make sense... and given this thread has a lot of experts in I thought I'd ask whether people thought this was normal, or whether the clinic who have gotten everything wrong so far, might be wrong again? I hope you don't mind me asking for my friend, i just really want to help her - she's on her third and final round of ivf x

Hello @Lozfish. Your poor friend! What a stress. I don't really know anything about that I'm afraid, but my partial molar pregnancy had a heartbeat (albeit slow/weak) and slow growth. I hope she falls into that 5% x

Thank you @treesall. I'm really feeling for her, we all know the stress. Also congratulations on your latest scan; I'm so happy for you, it's brilliant news! xx

Hi everyone,
Sorry I've been off grid for a bit, just been struggling a lot.
So I went for the 6 week scan 2 weeks ago and all was fine. They measured me at 6 plus 5 and saw a heartbeat. I was so happy.
Went for the 8 week scan today and I knew as soon as he started that something was wrong as he was just silent. There is no heartbeat. I'm not sure how to get through this. I'm booked in for an MVA tomorrow at CRP. Apparently it looks like it only stopped yesterday or the day before. The emotional pain is like something I've never experienced. Has anyone else has an MVA. We're going to send it for testing. This is the 7th time but never got this far before. I just don't understand it. Sorry for the negative post and I hope I haven't triggered anyone, I'm just beyond broken xxx

@Tumby I'm so very sorry for you. That is just so heartbreaking x

@Tumby I'm so so sorry. I've had an MVA before - mine wasn't successful though but they told me 95% are, the doctor was quite junior. Is Dr. Jan doing it? My experience was that it wasn't too painful, there were a few moments of really bad cramping but the good thing is it's over quickly and you can leave almost straight after. Thinking of you xxx

💔😔
Thanks @Daffodil21 and @Lozfish. Yes, Dr Jan is doing it, is he meant to be good? Thanks for the info. I just don't know what went wrong, it feels like a nightmare xxx

@Tumby I'm so so so sorry. That is devastating news, I am so upset for you. Sending you soooo much love.

I've had 2 MVAs, though neither were at CRP. If I had to have another one I would much prefer it to be done there and I would feel really safe in Dr Jans hands.

I won't type it all out here because I know it could be TMI / upsetting for some but if you want me to share my experience feel free to PM me. I am so sorry you have to go through this. Xxx

@Tumby I'm so very sorry to hear this. It's just so unfair. Thinking of you.

I have had an MVA under local anaesthetic. Obviously these things are always traumatic but it was very quick and for me, only uncomfortable and not painful.

Sending you love xxx