Immune/ NK cells - Pred threat 27

[LaurenAB94]

@Bambii @Daffodil21 @Eeviee @Everhopeful35 @farfromperfect82 @Eeviee @Everhopeful35 @Hazlet2 @farfromperfect82 @HoldingOn2Hope @Jellystar23 @KtAgs @Lalaifa @LookingforAnswers86 @Marabouchoc @LRL12 @MrsMargot @Naticle @NessyT91 @NessyT91 @NICK7nick7 @rainwillmaketheflowersgrow @Rebecca9876 @Sophfr17 @Tinpo @VenusStarr @Wheresmyrainbow @Whyisthistakingsolong

Thanks @LaurenAB94 and @Tinpo. We’ll see what tomorrow brings I suppose!

@NessyT91 fingers crossed for you! X

@Tinpo so sorry you have been feeling rubbish the last few days, be kind to yourself, you've been through a hell of a lot and I would imagine may have ptsd after what you've been through? I think we all must have it, I know I get terrible flashbacks to my miscarriages at 11 weeks so I can only imagine the pain of being much further along? We are all here for you and rooting for you and your little one! And I definitely second the projects at home, last year I redesigned the garden, this year I want to try panelling in my hallway, husband thinks I'm nuts but hey at least it keeps my mind busy?!

Thats me all booked up for my intralipids down at Epsom on Friday, have a lovely 14 hour round trip down and back so thought we would break it up with an overnight at a luxury Premier Inn haha! Its going to feel like a holiday with not being away anywhere for so long! Xx

@NessyT91 my fingers are crossed for you, its still early days! Xx

@Luckyducky2 thank you - yes I definitely think I do have ptsd relating to pregnancy and scans. I remember once I caught a glimpse of a pregnancy scan on telly, and it put me in a state of panic for the rest of the day. I was talking to my counsellor (through an amazing organisation called Petals if anyone is interested) and she said it’s as if this time my brain is protecting itself by feeling so flat about this pregnancy, because it’s so used to being let down.

I feel like it’s a mini holiday when we get to go to Epsom too! My next appointment is meant to be in London next Monday, but today they’ve moved me to the end of the day which is really inconvenient so I’m going to have to see about moving it later in the week. Much prefer seeing him at Epsom than London.

Hello ladies!

I hope you are all well. Apologies for the slightly random question but I was hoping you can help.

I was wondering if Dr S has mentioned anything about the Covid vaccine. I have had treatment before for overactive NKC (that resulted to the birth of my daughter) and I want to go see him again in September to start treatment again.

In the meantime, I would very much like to know what his view is on the AstraZeneca vs Pfizer vaccine. I was chatting with a friend that lives abroad ( she has a few mild autoimmune conditions and she was also treated with prednisolone) and it was suggested she does the AstraZeneca.

Has anyone heard anything from the clinic? I will call them to ask but I was wondering if you knew.

Thank you very much!

@MrsMargot I know he recommended that keyworkers who aren't pregnant yet get the vaccination. Hope that helps. Congratulations on your daughter , lovely news that you've come back to Dr S

@LaurenAB94 Thank you very much. That is very helpful. Did he say anything on the types? I guess not. I am wondering why a different doc for the same issues recommended one vaccine over another. 🤔

I am about to go talk to my GP about the vaccine (which I want to do desperately), I have no idea whether I would be given the option to choose but it would be good to know Dr S view on the types and whether it makes any difference.

@MrsMargot not that I know of. you could always drop him an email?

@LaurenAB94 And thank you for your wishes!! 🤗❤️ Gosh my brain is fried lately... 🙄

@LaurenAB94 I was thinking of calling the clinic to speak to one of the nurses. I will also send an email. Good idea! Thank you!

@MrsMargot I had my results appointment yesterday and got diagnosed with high NKC.

I also have other underlying autoimmune conditions and had my first vaccine at the start of Feb. When I spoke with him yesterday he said pfizer is the best luckily thats what I had and he advised me not to TTC until 3 weeks after my second vaccine x

@Wheresmyrainbow thank you SO so much!! 🤩

I hope everything goes well with your treatment. I am now reading all the past posts so I will catch up but if it makes any difference, I also have overactive NKCells (and multiple losses ) but his treatment worked and for that I will be eternally grateful. ❤️❤️❤️

Hi everyone

I’ve been catching up on the last thread and reading all of your journeys and I’ve found it really comforting that I’m not alone in this awful journey.

I’ve just had my 7th loss (4 miscarriages and 3 ectopics). It was a missed miscarriage and I had an ERPC last week.

I’ve spent a lot of time reading up about NK cells and have just booked in to see Mr S but the earliest he has is 14th April! I know it’s not long in the scheme of things and I will use that time to lose weight but I am struggling with the idea of putting off ttc as I’m nearly 42!
I really believe I need his help as I have mild lupus and thrombophilia and pretty much every time I’ve conceived it’s been while I’ve been on a course of steroids. I’m already on hydroxy for the lupus although I only started it again last September so I believe this helped my most recent pregnancy stick.
We saw a heartbeat and then five days later it was gone. We’re having cytogenetic testing as the yolk sac was 10mm and the sonographer said this could be due to a chromosome issue.
I really need to feel like I’m doing something positive and so I know I’m going to struggle with the 2 month wait.
I’m also considering seeing if I can get the same tests with New Life in Surrey. Does anyone have experience of their treatment protocols?
I am under the care of an NHS recurrent miscarriage clinic and I sometimes see the consultant privately. He’s a lovely guy but when I asked him about prescribing steroids he said no. I’m seeing him again next week so I will ask him again. My rheumatologist on the other hand said he had patients who’ve had multiples losses who have had success after being treated for NKC.
I really am the most impatient person and I don’t know whether to wait for Mr S or look elsewhere.
Thank you for listening to my ramble!

@Badlydrawngirly I’m so sorry to hear what you have been through. Like you I was 41 (just!) when I saw dr S then had my daughter age 43. I can’t recommend him highly enough. Is the April appointment in Epsom or London? I was willing to take a cancellation so my first appointment was in London thereafter in Epsom. Absolutely definitely keep the appointment in April and ask to be put on the cancellation list if you can travel at short notice. (I had a miscarriage whilst on his plan and so hydroxy was then added so fingers crossed you’re one step ahead in that respect) x

@MrsMargot your welcome, I love reading people's good news it gives me hope ❤

@Badlydrawngirly I know how you feel with the waiting, I feel like I wish the days away until we can start TTC again. I only got my results this week so I won't know if the plan will work for me yet but by seeing Dr S it has made me feel so hopeful for what could happen so I would 100% wait to see him x

@Naticle thank you, that’s so reassuring! Did you do SO? I’m hoping we can pretty much start that straight away once we get our results.
The apt. is in Epsom and I asked to go on a waiting list but she said to ring every Monday and see if they’ve had any cancellations. It’s so hard to get through on the phone though! She also said they tend to release any cancellations for patients undergoing treatment rather than new patients so I guess I’m going to have to just wait and use the time wisely!

@Wheresmyrainbow
I’m glad Dr S has made you feel confident! I’m sure it will be worth the wait, I just can’t get my head around not trying. Like you I will be wishing away the days!

Welcome @Badlydrawngirly! I’m so sorry for your losses but hopefully you will get some answers from Mr S. I completely understand how you feel about not TTC. I had to hold off for three months while waiting for my appointment and results appointment. It drove me a bit batty but I feel a lot more confident having started TTC again with a treatment plan to follow.

@Badlydrawngirly I didn’t do SO. I firstly had steroids alone for c4 months then an empty sac seen at 6 week scan. After that hydroxy was added and it took c 6 months (longest ever) to get a positive. I saw him a month or so before and he wanted me to try SO but I wanted to give it one last try without. I got lucky.
He has a fantastic reputation for getting results and so I’m sure he’ll prescribe what is best for you . Ring every Monday-at least you’ll then be in the back of their mind if a cancellation comes through. Good luck x

Hi @Badlydrawngirly and welcome, I'm also nearly 42 so I understand the pressure you feel inside to ttc as soon as possible! I would definitely recommend waiting to see Dr S, I've had 6 losses (2mmc, 1 ectopic aswell) and my last was on hydroxy after ivf. Hes putting me on prednisolone aswell as hydroxy for my next embryo transfer and hoping that works. I felt so lost after each loss and I definitely feel a lot more confident having the treatment plan and knowing I can say to him right what do you recommend now? Otherwise it just feels like you're doing the same thing over and over and getting nowhere fast? I would use this time to get fit, start taking your vit D and prenatal vitamins, omega 3 (he recommends everyone takes these) and to get in the best shape possible so you're ready to hit the ground running when he's got your treatment plan sorted for you! Have you taken co-enzyme q10 before? I took that for 3 months before my ivf (supposedly helps us older women produce better quality eggs) and I got a really good result with my egg collection (must be good for natural conception aswell?). Might make you feel like at least you are doing something, I know how hard the waiting is, I am the least patient person ever!! Xx ps I am so sorry for your recent loss, it never gets any easier 💔

@NessyT91 thank you and I’m sorry for your losses too. Batty is exactly how I feel! I’m glad you have your treatment plan, that must be a relief. I checked and it’s 7 weeks today until the appointment, not actually that long to wait but I’m going to be counting down the days I’m sure!

@Naticle congrats on your positive but sorry to had to endure another loss. I had an empty sac in 2017 and it was so cruel as I had to keep having scans before they could make a definite diagnosis.
I will be making a nuisance of myself every Monday!! They’ll be sick of me I’m
sure!

@Luckyducky2

I’m sorry for your losses too, you’re right, it never gets any easier. That’s interesting that you’re doing ivf as that’s what we were thinking we would do because of age and the fact I only have one tube. Did Mr S suggest you try SO at all? I’m trying to second guess what might happen and it’s annoying the hell out of my husband! I think in some way it helps me to feel prepared and I do like to plan. I’ve looked at NewLife clinic in Surrey just because it’s easier for us than getting into London for multiple appointments. So I guess MR S is happy to work alongside IVF clinics? I just want to do whatever is going to be the quickest route to having a baby and avoid any more losses but I know there’s no guarantee of that. The stress of this last loss nearly ended our marriage and we are both worried about facing another one but I am not ready to give up just yet.

Thank you for sharing your stories with me and I feel a little better about my age now!

@Luckyducky2

Thanks for the tip on the co-enzyme q10. I’ve heard about it but not taken it so will get some! I’ve got omega 3 and vitamin D and the clinic I spoke to in Greece recommended melatonin and serrapeptase. I started on melatonin so not sure if that helped me conceive this time. You’re right, it will make me feel like I’m at least doing something before the appointment.

Hi @Badlydrawngirly yeah I did SO with Dr S' plan, though mine was a bit more complicated. I'm up in Scotland and was already doing SO with my local NHS assisted conception clinic so he allowed me to do that with them and follow his treatment plan alongside it as the travelling up and down every month is difficult. SO worked for me when I had my son nearly 4 years ago but I tried for 6 months last year and got nothing so I moved straight onto IVF as I dont want to waste time. I got a really good result with 5 embryos which the clinic were pleasantly surprised with so I feel like it's eased the pressure a wee bit (for the moment!). Dr S was a little bit curt when I mentioned I was going to start IVF and said I could follow his plan but he wouldn't prescribe me the medications without having intralipids at his clinic aswell. My ivf clinic wouldnt prescribe pred or hydroxy so it was a no brainer for me? But ive heard there are other clinics in London do offer it? I totally get the stress on relationships aswell, my husband would have been quite happy ro stop with the 1 child but I just feel so strongly that someone else is missing from our family and its hard making someone else understand those feelings when I cant guarantee a baby at the end of it? God I hope this works!! 💕 Xx

@Luckyducky2

Thank you so much for your reply! That must have been hard travelling so far every month. Are you still having to come down for intralipids?
I’m going to be honest that we don’t have years and years so we will try SO but for 6 months max. My husband is 45 in September and doesn’t want to be nearly 59 when we have a child! I totally understand that and we need to draw a line under it at some point. I hope Mr S might be flexible as I only have one tube. I guess SO might work if I ovulate from both sides! Can you tell I am driving myself crazy with all the possibilities?
That’s a great number of embryos! When are you planning your next transfer?
You’re right, it’s so hard to get someone to agree to expensive and invasive treatment that might not work. I am worried that if my husband asks what the chances and it’s less than 10% are he will say he doesn’t want to risk it.
I really hope it works too! Keeping everything crossed for all of us x

@Badlydrawngirly I'm sure he will understand the urgency and get you right on the superovulation, are you quite close to the clinics? Hopefully won't be too bad for you if you are, its such a pain going up and down from Scotland but needs must. There's no-one up here that offers the same treatment, not even the ivf clinics, I feel like we are so in the dark ages! I did SO on and off for 3 years, had my wee boy quite quickly but after that it took longer and longer after each loss to fall prego, last year it just didn't work for me. I'm not sure if the body stops responding to it after a while? Anyway fingers crossed it will work quickly for you!

I'm back down to Epsom tomorrow for intralipids and then embryo transfer hopefully in 10 days time....so scarey!!! Scared of another loss, scared how much money we are spending....aah! Fingers and toes crossed for us all xxx