Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

Hello all, I recently had IVF plus Shehata's protocol trying to conceive number 2. Was on; metformin, hydroxy, intralipids and humira. I had an early loss at 5 weeks; the nurse geri suggested I may go on to prednisone; I wondered peoples thoughts on why, will all that suppression already and a top quality embryo that implanted, would it more likely be chromosomal issues, or could I need more suppression? Think I'm conscious that this protocol minus humira, worked on my son - and don't want to to too much in terms of suppression. Might it be that the environment was good, it was just the embryo? Or should I consider the additional prednisone? Any thoughts/ experiences appreciated!

Hi @MotherOfShihTzus I’m so sorry for your loss did you have the pgt testing on your embryo as if you had that it should have ruled out anything chromosomal . I’ve heard so many people say they had the best quality upload embryo but when tested was chromosomally not viable. 😢
I think when you have a loss with Mr S they tend to add something new to your list of meds till just to try that bit extra. I’m so sorry I know nothing more than that.
strange one for me this morning went to the loo and fresh red blood only I’m only 10dpo bit achey since it’s happened no idea what that is wonder if it is linked to the meds but no idea 🤦‍♀️🤦‍♀️🤦‍♀️my periods are always 28 days so who the heck knows

@Gizmo1983 ive heard of other people saying they aren’t able to get pregnant once on meds- they thought it was from starting progesterone too early. When do you start yours?

@Pupsandturtles ive only just done my first round. I get the same pain every month when I ovulate so I start them 24 hours after that x when do you start yours ?
its weird this the 1st month ive done them and just had a red gush of blood this morning like if you cut your finger and been very achy ever since no idea what this is about 🤦‍♀️.

@Gizmo1983 i got some bleeding from
them too- I read they can irritate the cervix 🙈 I start mine on day 18

@Pupsandturtles thanks so much for this it was literally a gush of bright red blood then nothing else but been having cramps literally all day. I’m having a hsg soon as have always wondered if something structural going on I’m praying not.
I live 5 hours away from Epsom so on top of intralipids it’s going to cost about another £300 to fly down or £250 for the train on top of intralipids price 🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️ hubby won’t let me drive all that way esp if having drip in case I feel funny on the way back. I’m I’m lucky enough to fall pregnant I’ll be there for them all but going every month for them to just try get pregnant is going to cost me £500 a month on top of the other meds 😢😢😢

@Pupsandturtles sorry to bother you do you take hydroxy on your plan? I’m a bit confused as mine says 2 different things so I don’t know whether to keep taking it constantly or do you stop taking it after a negative test and restart on cycle day 2. I’ve e mailed the clinic but had no response 🤦‍♀️

@Gizmo1983 I’m not taking anythjng other than pred yet as I’m still working out the details of my plan. Definitely harass the clinic- that’s an important bit for them to explain to you!!

@Pupsandturtles thanks so much I shall keep trying to get through. Good luck with sorting your plan everyone’s seems to be a bit different doesn’t it which I suppose is a good thing x

Hi @Gizmo1983 thought I'd jump in. I've continued taking hydroxy post loss, and ahead of next transfer. As I was on it continuously before my last ivf transfer, I've continued since my chemical x

@MotherOfShihTzus thank you so much the clinic also have just e mailed and said to keep taking it. I’m so sorry for your losses. It’s hard to keep going sometimes isn’t it xxx ( just thought I’d better explain when. I say hard to keep going I mean with all the meds and lipids as well as losses it just takes it out of you and seems never ending ) xxx

Ugh. Does anyone else find themselves really frustrated with different specialists saying different things?

I have one telling me that my immunes are very bad and that I’ll need to be on meds for a few months before it’s even worth trying to get pregnant.

and another telling me they’re not that bad, and I can get away just with pred from CD20 and nothing else.

can anyone share their numbers with me so I can get a sense of how far off base my #s are? My 50:1 NK cells are 22 (Dr 1 says it needs to be below 10, Dr 2 says below 20 is fine) and my TNF alpha ratio is 41.

@Gizmo1983 @Deerdancer34 @MotherOfShihTzus

@Pupsandturtles my total nk cell count was 230. Activation was normal. Nk cell 50:1 27% cytokines normal. I’m still confused by what all these mean a bit lol but is this the info you were looking for x

Thanks @Gizmo1983. I don’t think they tested my total NK, just the 50:1 and 25:1

@Pupsandturtles yes with reading on here it makes u wonder if taking the pred at ovulation prevents implantation. I think mr Shehata is the only one who does pred at ovulation but he does have a very good success rate. It’s just a minefield isn’t it xxx

@Pupsandturtles Back when I started before having the humira jabs my NK Cell 50:1 was 25% and my TNF-alpha IL10 was 36.8.
Tbh I was very sceptical and I don't really understand it but it kinda gave me a possible reason as I lost all my babies so early, I thought maybe these NK cells are attacking the baby...but I don't know. And compared to the NHS who said come back when you're pregnant & take progesterone at a positive test, I was grateful for a plan and a possible reason with CRP. With the NHS unfortunately I felt like I was cast adrift. I realise that maybe it would work with just progesterone but I wasn't willing to wait and see if it worked, they forget the emotional toll. The clinic also found out, that I probably have PCOS which the NHS missed. So I do sort of wonder if I could just do SuperO without all the meds, whether it was the PCOS that caused my miscarriages because of bad quality eggs but who knows....
I don't know if those numbers help? I have the results after my humira jabs and then the results also when I started again after my ectopic if you need.

@Deerdancer34 i was given exactly the same at the nhs, in fact wasn’t even given progesterone. Pretty much told me I was too old and not to expect much. My last loss was genetically fine so at least we know that wasn’t down to my age. We ended up doing 3.5k worth of tests at CRP and then husbands on top and literally the only thing that has come back is the natural killer cells. So if it isn’t them then I literally don’t know what else to do. Whenever I’ve mentioned nk cells to nhs drs they just clam up. I did my first cycle on the complex plan all was fine till 9dpo when I had a gush of bright red blood then spotting and now I’m bleeding but no where near as heavy as my usual period so I have no idea what’s going on. At least before I always knew where I was in my cycle now I don’t even know if this is a period or something else 🤦‍♀️🤦‍♀️🤦‍♀️
@Pupsandturtles how are you getting on xxx it’s so hard when different drs say different things you just do t know what to do for the best. I’m 40 so don’t have time to mess around and I think that makes things even worse as every cycle counts 🤦‍♀️🤦‍♀️🤦‍♀️

Thanks @Deerdancer34 - your numbers look very similar to mine. I saw a new consultant recently who I liked a lot. He felt like a middle ground between NHS (‘just bad luck’) and my other consultant who wanted me to do loads MORE tests (incl uterine biopsy) and take a very aggressive medication approach! This one said just intralipid ASAP and then pred + clexane from a positive test for me. I asked about Humira and he said it makes TNF worse for some women, so he didn’t recommend it! What a minefield! What happened to yours after Humira? And how are you feeling in general at the moment?

@Gizmo1983 i feel more positive after meeting this new consultant but nervous that his protocol won’t be ‘enough’… Is your bleeding still bright red? It could
still be the cyclogest, mine made me bleed a lot (it was alarming!)

@Pupsandturtles i totally agree with not knowing what to do for the best. My plan is to take meds before ovulation but I’ve now reading through this thread struggle to get pregnant even more than before. I never had an issue getting pregnant but since my last MC it’s been 8 months and nothing. Mr S said i may get pregnant quicker on the meds with my NK cells preventing implantation. I’d rather go straight for ivf but mr S and my husband want us to try naturally for at least 3 months. I need to get my intralipids booked ( think I’m going to fly down 🤦‍♀️)
i had a bright red gush, it went dark spotting and is now bright red again just like a period but but as heavy as I usually get but I’m thinking this is my period now ( definitely hoping it is ) it’s all so confusing

@Pupsandturtles ,@MotherOfShihTzus @Deerdancer34 and any lovely ladies on here hope your day has been ok I certainly know it’s not the easiest of days xxx
hope you’re all ok. Nothing much to report from me really I’m a bit stuck in limbo as had that weird bleeding, saw a lovely consultant as I was convinced I had another cervical polyp so he had a look and was going to remove it for me but there was no polyp which was good so I don’t know what bleeding was my period and what was from all the messing round down there but it seems to be finally stopping thank goodness. Due to not know what was my period I haven’t been able to take my letrozole this month so I’m on a natural cycle so not very happy about that.
I finally got my date to have my hysteroscopy, I have that on 8th April so I will be really glad to have that and if they don’t find anything there I have absolutely no idea why I’m not getting pregnant. I’ve stuck myself on a 2 week course of doxycycline just in case I do have any kind of residual infection haven’t bothered doing the Emma/alice test. And that’s where I am, I’m taking my complex plan meds and got my 1st intraliiids booked. It’s been a really traumatic week esp with thinking I had another polyp and not knowing where I am in my cycle but there we go. If nothing happens we are looking at starting ivf in June I think. Lots of love to you all xxx

Hi @Gizmo1983 - sorry you've had such a stressful week. It feels really tough to have what we perceive as a 'wasted month' as we get further into this process. How did you go about getting antibiotics? I'm keen to do the same; started pre and probiotics, added kefir to diet, but didn't feel enough! I'm planning to transfer an embryo again in April. I think Shehata is going to prescribe pre on top of existing protocol which I'm a little unsure about; can't help thinking my early loss last month was more likely due to the embryo. I'm turning 39 this year with pcos so it's a high possibility!

I hope everyone is holding up given the day ❤️

Hi @MotherOfShihTzus im 40 ( and a half 😬) time just creeps away doesn’t it. I’m sorry about your last embryo got everything crossed this one goes well. I think I’d just take everything mr S offers. If we do get to ivf we need to decide whether to test them or not. I’ve had 2 losses one was genetic and one wasn’t so it’s literally 50/50 for me. To be honest I went online and said I was going to a country with malaria and got them that way, not a great thing to do but loads of women in here have done it so thought why not I have nothing to loose ☺️. Hubby had the fragmentation test so he is all clear so the issue is defo with me which I suppose at least we know where we need to focus xxx

@gizmo I wouldn't feel disheartened, I fell pregnant on a natural cycle! I had 8 letrozole cycles and was so frustrated nothing was happening and then I was advised to go on a one month break to give the ovaries a break and I got pregnant!

@Deerdancer34 I always found the NHS brushed off my issues because of my age! I just always got told I'm old and my eggs are most likely no good which used to upset me. The consultant told me just to keep trying and eventually in 2 years time i should have a "take home" baby! When dr s told me I had PCOS I went back to my NHS consultant again as I wanted to know why after 3 years of scans and losses they were not able to detect that. He basically told me I don't have pcos! So I was very confused. I explained to him about dr s clinic and killer cells etc and his response was if I want to have a disabled child then go ahead with that clinic 🤷🏽‍♀️. Obviously I did go ahead with Dr S and have 2 beautiful healthy kids.

@Gizmo1983 @Sophi81 It makes me so sad because I have always championed the NHS but in terms of Fertility, they are not good and I personally feel it is lack of funding & research and they just fob us off. After that appointment I went back a year later to try & get steroids because GP was willing to try but hosp said I needed an appointment. After doing a year at Dr S, I felt far more knowledgeable but basically got into an argument with the consultant who said she wouldn't give steroids to her nearest & dearest and she has to follow NICE guidelines. No1 this isn't true when I went a year before they did say they gave steroids but had suspended over covid, one of her seniors told my GP they did give steroids from ovulation but thos consultant was having none of it & I thought what's the point. A lot don't believe in NK cells because its not NICE approved but I sort of think where's your curiosity? Medicine wouldn't move forward without people like Dr S thinking outside the box...They basically need more trials for anything to get approved & I just think well what are you going to do with me....nothing!? @Sophi81 I'm just shocked by what he said to you, do they not want to help!?
@Gizmo1983 I am so so sorry you've had a tough week, it is awful when a cycle is wasted, its disheartening. I had to change my midset (because I had a big thing about time) to think, right I'm doing this for 3 months and then I'll try this, which did help me month to month because before I used to feel just so so dark every month.

@Pupsandturtles My TNF alpha went from 36.8 to 27.5 which I had no idea if that was a good drop but he said I could start trying then. 9 months later after my ectopic my TNF alpha was 31.1, I didn't do another blood after the humira that time to save money and it had gone down last time so I assumed it would drop again.
I am feeling ok, 8.5 week scan went well which was good, think I'll feel happier after 10 weeks!

Sending lots of love to everyone 💗

Agree with you completely @Deerdancer34 unfortunately, acceptance of immunology treatment for fertility may never gain wide acceptance due to the ethics of testing on pregnant women, from what I understand.

@Gizmo1983 I haves ordered 11 days on doxycycline 😆 is there a best time to take? I'm conscious I'm hoping to transfer next month, so would I wait til I get a reliable negative this month then take - ahead of an April transfer? Or do I take it closer to transfer? Feel like a rebel 😂