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!

@star2022 thank you. It does feel good to know we don't have to be on a schedule this month. My face is still puffy from the pred as well so I'll be glad not to have to take it for a while.
I'm sorry you argued with your dh. The hormones can be horrible and make you irritable. Hope you're feeling better today.

@Ems123456789 hey, welcome. I'm sorry for your losses ❤️ are you going to do a medicated FET in June?

@comingsoon786110 I do find gcsf gives me leg aches, it's hard to describe, but feeling achey kind of flu-like. I really felt quite run down last week in the few days after taking it. Had horrible headaches too.

@SReyn ❤️ pleased to hear things are going well.

I had some random dreams last night again, about me taking pregnancy tests and seeing faint lines. I also dreamt I had 2 really tiny babies I was carrying round with me. Even though I slept better than I have in weeks, I feel really tired.

@VenusStarr @Lily1990 @SReyn @star2022 thank you lovelies 💗. My hubby and I went to see Kevin Hart at the o2 yday and so we at least had a few hours of laughter.
@comingsoon786110 yes bone pain is a side effect. I think it works by stimulating the bone marrow to produce more white blood cells.

@Lily1990 that doctor sounds horrible. What a cow. I find nhs RMCs so shit. They literally give you some progesterone and aspirin and maybe clexane and tell you to be on your merry way. Have they prescribed you anything? If they have, use them for the meds and ignore anything else they say as you're under Shehata. If they haven't and you feel strong enough, i would complain and/or ask to be referred to a different rmc or different doctor for a 2nd opinion. Xx

@SReyn glad to hear your success story 💗 and ugh re the timing of those announcements. It feels personal honestly. Not on the sender of the announcement but like the universe is having a laugh 🙃

Question for those of you whose partners have high dna frag..how far along did you get in your pregnancies.? Just asking as the main reason we are doing ivf is to put back pgs tested embryos. But obviously f all has made a difference so far. Which makes me think my immune system has been the cause for each of them.

Also does anyone else on here experience night sweats as a symptom in early pregnancy before it goes wrong? Someone on Facebook said it could be a sign of oestrogen dropping and I know our immune system can attack our hormones... I'm wondering if I need to ask for extra oestrogen next time. I wasn't on any this time as it was a modified natural FET. Xx

Aah I knew I missed some
@Ems123456789 I'm sorry you find yourself here too. Are you under a reproductive immunologist or is your ivf clinic doing everything.

@VenusStarr I often wonder what those dreams mean. If anything. Some of them are so nice I don't want to wake up from them! Always hoping it's a good sign though.
Also I totally get you with adoption. I used to think if I had to, I would. But like you said it's a complex system but also the children going into care these days are not like a teenage pregnancy or something. These children are often from abusive/neglected homes. If they're babies, they're often taken at birth because of parents history with their sibling and are often born addicted to drugs. Very sad. So for the people thay adopt, I think its better if they have a passion for that and it isn't because its their only option. Because these children are traumatised and will likely have emotional needs and possibly other needs as a result. Which, if someone goes into it, not being ready to support thay child with their trauma especially if they're traumatised from ttc ...then 🤯.
Would you ever consider surrogacy instead if you had to look at other options (hopefully you wont)? Not an easy route either but obviously different to adoption. Xx

Thanks for the welcome.
@VenusStarr i am doing a medicated frozen transfer yes, likely in June.
@Danni8 thanks, I’m so sorry to hear of your recent loss and also of the journey so far. I am currently under an ivf clinic in Brighton which do not particularly believe in immune issues but have been willing to consider them for my final transfer there. I seeked a second opinion from the Lister in London, Dr Thum who was very knowledgable. It appears that cytokines and natural killer cells are both issues for me on top of the low ovarian reserve.
I ended up down on a Google rabbit hole last night to find out what causes these immune issues. Some people (doctors, accupuncturist) have told me stress and lifestyle but I am very healthy and yes have been stressed with a number of things but I just don’t buy it! I also found some papers about how these immune issues can be genetically passed on and also how low progesterone can cause immune inflammation. Not sure if anyone else’s doctors have ever given them some sound reasoning behind it.

Morning all,

Hope everyone is good and sorry to keep turning to you all over and over again but no one knows of my struggles apart from my husband obviously and my parents.

Has anyone ever gotten to a point where they have stopped trying with all the medication and just tried naturally and had success? I feel like I'm at this point and all this medication is having the opposite effect on me. I'm thinking to try my next cycle completely unmediated, not even HCQ and see how that works out.

The reason I say this is that how many more medications can I add until I see success or at what point is it the limit?

I am also going to be asking my GP for a referral to a different RMC, anyone have any in mind better than St Mary's? I did think this was one of the best but clearly not- I've had such an awful experience with them.

I'm just looking for a solution really.

@comingsoon786110 sorry to hear you have had such a bad experience with your RMC. I haven't had a great experience at mine either all in all. Can't say they have helped me in anyway besides getting free cyclogest!

I haven't quite got time to respond and catch up with all the posts from everyone but I just saw your post come in and I think some of the things I've been looking at recently might be helpful/relevant - so thought I'd mention.

So I've been following the fertilitydetective on Instagram and she is about to start a MSOM course in May which might be something you might want to look into. Looks like she might be able to help you consider and think of other potential reasons and ways to help.

And then alternatively, I've also been following a lady who is a conception doula - Helendavenportpeace. Quite alternative and I think the service is very much a support service whilst you are going through this really shitty ttc journey. Someone else to turn to. She also does yoga and I think a lot of it is focused on healing the nervous system too, which makes sense to me - as I know mine is well and truly messed up now by all the trauma etc.

Both of these may not be what you were thinking at all and they are very different from each other. The fertility detective is very much about trying to find real answers and leaving no stone unturned and she seems to have a wealth of knowledge. The other lady I think is more about trying to let go a little and tackle things from a different angle.

I've been pondering about the latter one because at this point I feel so exhausted carrying the weight of ttc and losses and it might actually really help to have someone in your corner spurring you on somewhat.

Finally - I'm thinking more and more that I need to have a laparoscopy for endo with a specialist... I just feel in my bones that there is a reason why my body has gone haywire immunes wise - and whilst Dr Shehata has assured me that endo would not cause recurrent losses I've read so much information on the subject now and it seems it is a hidden cause for so many ladies fertility problems, for lots of reasons, in different ways and to varying levels.

I'm not sure I'd feel safe coming off the hydroxy completely but I'm tempted to give all the other meds a rest for a couple of months this summer.

It would be interesting to hear if any ladies have found success off the meds after everything...

@Danni8 my husband's dna frag is above average, but not very high (I dont think). It was 16.4% our babies have only measured 6+2 (4 mmcs and 2 chemicals - I think both chemicals were progesterone related). But we tested 2 of our mmcs and both were healthy.
Have you had any of yours tested? (Sorry if you've said and I've forgotten).

We've ruled out surrogacy. I don't think I'd cope well and our last ivf round didn't give us any blastocysts plus having lost so many pregnancies and the trauma that brings, I couldn't ask someone to take that on and have that risk. Dh isn't keen on egg donation either and I'm unsure how I feel about that too but even if I wanted to it's a moot point.

@comingsoon786110 we're going to ttc I think this month but will be on hydroxy and aspirin and im temping, so will test at 12dpo and start pred and gcsf if it's positive. I'm sorry you're feeling so low ❤️ I was under a Tommy's rmc but they gave us nothing. Not even progesterone.

@HopefulH I hope you can find an endo specialist. It's hard to know if you've definitely discovered everything and if you're concerned best to check.

@Zest11 I hope everything is OK, was egg collection yesterday? ❤️

Been to zumba again this morning - the instructor saw me in the car park after and said she loves how I throw myself into it and give it my all! 🤣 genuinely makes me happy and makes me smile.

@VenusStarr I'm thinking I am going to do the same as you. Are you not going to try intralipids at all and if you do get a positive (hopefully you will) will you go on to have your 4 weekly intralipids?

The reason I am so confused and down these past few days is because when I did my 11dpo test last week it was negative so I gave it a few days before I stopped my medication. I hadn't started my period yet but I thought it was because of the progesterone.

I called my early pregnancy unit and when I got there they decided to do a urine and HCG test. My urine showed a slight positive and my HCG showed up at 25 which meant positive for pregnancy. I did my second GCSF injection that same day and it was exactly 3 days after my 11dpo test. I was shocked but didn't call CRP because I knew it was going to be short lived. I didn't book my 4 week intralipids either because I wasn't prepared to waste the money because 25 was kind of low for being the DPO that I was.

At this point medication was stopped but I still hadn't started to bleed. They did repeat bloods on me yesterday evening to see if it had increased and they called me this morning and said it had dropped to 21 which means it's not a viable 'pregnancy'.

They asked me all the generic questions about shoulder pain in case it was an ectopic etc... and I don't have any cramping or bleeding or pain anywhere apart from bone pain from the injections. I don't know what to do now.

I have emailed the clinic but obviously as it's a long weekend I won't be hearing back from them any time soon.

Early pregnancy unit has asked me to another pregnancy test again on 2nd May to see if my test is still positive then contact them. They said they won't be doing another blood test as if it was a viable pregnancy my levels would have double within the 48 hours and mine obviously haven't.

So to sum up. Apparently I was pregnant this month but will have another miscarriage. 6th overall, 2nd with CRP. This one is with intralipids, HCQ, omeprazole, Pred, aspirin, GCSF. The one in January also with Dr S was the same meds but without GCSF. Don't know what to do and what's next for me.

Have never been this confused in my life. Oh and on top I got in contact with RMC for my heparin injections as well (even though I wasn't going to take them) to let them know I needed my prescription and they still haven't gotten back to me!

This sums everything up. Shit situation. Don't know what to do next. My last 2 miscarriages I started my miscarriage bleed even though I was on progesterone so don't know why it won't start now. According to my period I am 4+5 today.

I feel like I can't take anymore medication and I simply don't know what Dr S can offer me now. I was so hopeful he would have been able to help me but clearly not. I'm really pissed off and I don't know why this keeps happening. I just can't seem to get passed a certain point. I know the medication is working because this is the 3rd time I have been since since being on it since last November one of those times being Covid.

This is why I'm thinking to try an unmedicated cycle with maybe just HCQ.

Any advice would be highly appreciated and please don't be shy to give me your opinion and feedback 💜🧡. I really need it at this point. I have broken down too many times now and it's made me so numb where even this heart shattering news doesn't even allow me to shed a tear.

@comingsoon786110 yeh I'd do intralipids as well.

I'm so sorry ❤️ did you test positive at home, or was it just at epu that you found out? I think it sounds like you maybe had late implantation (I'm just guessing). Was your January loss a chemical too? Its very shit. I do think sometimes maybe chemicals are not chromosomally healthy but again we don't ever know so just a possible reason.

So have you not bled yet? I've always had to see Dr S after a loss. I am on a Facebook group and lots of people are under Dr S and some people have had early losses and not changed protocol and the next time it worked out. It's hard to trust things though xx

Hi

Just catching up on all the posts

@Danni8 I'm sorry with what you're dealing with. It's so rubbish and it's even worse when you invest so much emotionally and financially to still not have answers! And pregnancy announcements are so so tough. I'm really sorry.

@Lily1990 oh ffs, it's such an awful thing to go through and then some staff just really don't understand how insensitive and invalidating they are.

@Ems123456789 hi and welcome. Sorry to find you here. Welcome to the low amh club. Do you know if there are any other causes for you not conceiving? I am lumbered in the 'unexplained' category although Dr S did find high nk activation but then said he couldn't be sure that was stopping me from getting pregnant in the first place.

@star2022 thank you for your reply re lining. Mine has seemed to plateau at around 12 for this cycle so I think that's fine. I hope your period is calming down now. How are you feeling about this cycle?

@comingsoon786110 oh I'm sorry you're unwell on top of everything! So annoying. The first time I tried prednisolone a few months ago (naturally) I was gifted with COVID. Brilliant. I hope the illness goes away quickly.

@VenusStarr well done on the fitness!!your Fitbit is looking great! I have never done Zumba...the dance moves look so complicated! I am a regular at combat though! I think your plan is a wise one...it's so tiring month after month ttc, remembering to take the different medicines at the right times and yes, the commitment to frequent trips to epsom can be exhausting. I sort of factored that in when I thought I would just do 1 last round of IVF and see what happens rather than month after month of SO. I sort of want all this to end and I was put off when Dr S said it takes on average 4-6 months of SO.

Yes EC was yesterday. I feel sore, bloated and uncomfortable. But I suppose that's to be expected being on the highest dose of drugs and the shock my ovaries must have had. I forgot what it was all like. I'm trying not to think about how things will pan out. I'm still contemplating on freezing everything (if I even get anything!) to let my body heal. I have had 5 transfers in total and 1 wonderful boy but he was from a frozen (EC in 2019) so I am unsure about a fresh transfer. I want to be in the position that if/when it fails I will have peace of mind knowing I tried everything in following the plan.

@Zest11 I hope the soreness is easing. How dud you find the higher dose stims? I've got low amh and only done mild stims. I've got a low afc too. Are you getting a day 3 update? Keeping everything crossed for you ❤️

@star2022 how you feeling today?

Thinking of you @comingsoon786110 xx

@Zest11 at the moment I believe it’s down to low amh and immune issues! Though there are other tests I have not done like Emma/Alice and Sperm DNA frag etc. if my next transfer doesn’t work I’d perhaps look into these.

I am sorry to hear how sore you are. Egg collection is a bitch. Hope you can rest and take it easy over Bank hols

I started bleeding today after some brown spotting yesterday. So I guess this is miscarriage number 6 confirmed at 4+6 days.

Just had the news yesterday that my 22 year old sister in law is pregnant a year into her marriage. Not planned at all, just careless with her contraception and boom. Was so hard to hear just as I knew I was expecting a miscarriage bleed. No one in the room knew what I was going through apart from my husband and him and I haven't spoken since yesterday. He deals with things so differently and has kept himself so busy these past few days that he doesn't even know I have started my bleed yet.

I am thinking to call St Mary's on Tuesday and tell them I would in fact like to go ahead and have my hysterscopy done. I knew Dr S is against but to be fair he has never scanned me and doesn't know the shape of my uterus or if there is any scarring or polyps there etc. I have done A LOT of research since yesterday and I am starting to suspect Asherman's syndrome. I am just so sure Dr S's treatment should have worked on me and I can't seem to think why it hasn't. I am not okay with just being discharged like that from RMC and will be raising a complaint.

Because I refused it in the passed and now want it does it mean my GP will have to refer me again or I can go back to them and just ask for another date?

Oh and also I am thinking to try a completely unmedicated cycle this month. Literally not even aspirin, just progesterone maybe. It's a long shot but I have tried everything else but this.

How is everyone else doing?

I'm so sorry the miscarriage has started @comingsoon786110 ❤️ and that you're not speaking to your husband. It's so difficult. Do you feel like you want to talk or just be on your own?

I think a hysteroscopy is a good idea, just to check things out. I hope you don't need to go through the referral again. It's been a year since I had one at crp, it is good to check things out.

Lots of love xx

@Zest11 ahh i'm glad your lining plateaued and glad your EC went well, hope you're starting to feel a bit better! Hope your next few days aren't too stressful, I remember how anxious these days are after EC. I feel okay about this cycle, just always a bit of a headfuck going into a new cycle as on one hand I feel hopeful as this will be my first cycle after having the hysteroscopy done, and it will be my first cycle on 25mg prednisolone but then on the other hand my brain is saying 'who are you to get excited when its never worked for you in the past?!' and the fear and doubt creeps in. I feel exhausted already and it's not even properly begun. My scans in a few days when i'll find out about lining/follicles etc.

@comingsoon786110 I'm so sorry to read this. I really hope you're doing okay as can be. Can relate to the sis in law situation as the exact same thing happened to us last year when my sis in law announced their pregnancy after i had my 3rd failed transfer, 1 month into their wedding, weren't being careful and got pregnant at the drop of a hat. We're actually going to see the baby tomorrow and I just feel so bitter about it all but know that its completely normal to feel this way too so i'm not beating myself up too much. I really hope you get some answers.

@VenusStarr How are you doing? Is AF over? You restarted the steroids this month for SO after having a 6 month break was it? Did you notice the moon face appear even just from taking it for 10 days? I'm soo anxious about this side effect, I'm generally a slim person and I just don't want the round face so that people start to assume/ask that i'm pregnant. I know it sounds silly, but it's just going to irritate me in case i get triggered. My MIL in particular 🙄 Do you feel a bit better now knowing you've got a plan in place for this month?

@Ems123456789 sorry i forgot to say welcome and sorry to find you here! Have you had a medicated FET before? And are you doing it alongside dr s immune protocol?

Hi everyone, thank you @VenusStarr @star2022 @Danni8 and @Zest11 for your kind replies on my message about the shitty doctor, I really appreciate it xx
@Danni8 I haven't been prescribed anything from the RMC, but have now asked to be referred to a different one and after your advice I'll push to at least get cyclogest and aspirin, as have spent a bomb on private cyclogest prescriptions so far!
@comingsoon786110 I'm so sorry to hear about your miscarriage and the news your sister in law is pregnant, that sucks. I think it sounds a good plan to call St Mary's and ask for the hysteroscopy, so you don't leave any stones unturned. Even if there is nothing wrong, it's a piece of the puzzle you'll be able to rule out.
@Zest11 keeping everything crossed for you, hope you're able to rest and relax now - well done for getting through this.

I have the same question as @star2022 about the moon face side effect of steroids - I've never taken them before and nervous about it (although I don't even have my results or treatment plan yet!). TTC is hard enough without your face getting fat and people wondering what's wrong. Has anyone who's taken the steroids noticed a moon face or has it not been so bad?

Hope you're all enjoying the bank holiday weekend xx

Hey @Lily1990 I've only taken 10mg before for my 4th ivf transfer and was on it for about 12 days and I'm sure I noticed my face becoming rounder (not sure if it was me overthinking it though as hubby said I was fine) but i also had ravenous hunger with them, like crazy hungry so 25mg really scares me.

Also wanted add if anyone knows- how soon after you stop them does your face return back to normal? And do you have to wean off them at 10dpo or do you just stop them completely?

Apart from the round face, I genuinely felt so good on them, my body just felt stronger, no aches and pains and I had SO much energy so i'm looking forward to that part lol xx

My face gets rounder on steroids 😕 @Lily1990 @star2022 after my last mc I had to wean off as I was 8 weeks when we found out. That took months to go. You don't need to wean if no bfp, you can just stop all meds at test day if it's negative. But if you're on for 4 weeks or more you would wean off.

I was starving this last cycle, think the combo of pred and progesterone just made me hungry. I was drinking loads too so felt I was retaining water. I've been off pred for a week and still think my cheeks are puffy.

@comingsoon786110 I’m so sorry to read about what you’re going through. I’m very much in the same situation as you. I miscarried on 18/04 for the fourth time, second with CRP. We were told during what should have been our 9+3 week scan at the EPU that our baby’s heart had stopped. We were sure this was our time and with the support of Dr S, we trusted his protocol in helping us bring a baby home.

I’m well and truly lost and just don’t know how much more we can take, physically, emotionally or financially!!

In terms of medication, I’m on everything you are on, minus the GCSF, which I’m assuming Dr S will suggest next. We opted for MVA surgery with CRP so just waiting on the results. Tbh, I’m losing hope with Dr S but can’t help but feel we could be so close.

Sorry, I don’t have advice as such but just wanted to give reassurance that we’re in this together 🧡

@VenusStarr I saw that you mentioned a Facebook group, do you know what it is called? I’m always interested in reading about / connecting with more people who are under Dr S’s care.

@RJayne ❤️ it's called UK recurrent miscarriage group: storms and rainbows.
I hope you're doing ok and your results don't take too much longer xx

@VenusStarr Brilliant, thank you! Just requested to join the group.

I was just reading back on a couple of posts too, definitely agree with the puffy cheeks / face. Literally noticed this the other day.

Once I’m ready, I plan to take control over what I eat / exercise etc because the likelihood is we’ll take a long break between cycles x

Hi ladies.
Just catching up. Been a really emotional weekend. I was alone most of it which didn't help.
Bleeding started yesterday and passed sac today. Out of all the losses I've had, I've only seen that clearly twice. I've sent it off to be tested just incase but as it was pgs tested I'm expecting it to be normal.
I cannot believe I've been miscarrying pregnancy after pregnancy for nearly 6 years. What a nightmare.

@VenusStarr I've tried testing the tissue twice before but it hasn't produced results. Let's see what happens this time. I hear you re surrogacy. It's only immersing myself in that world that's helped me to kind of come around to the idea, but yeah you have to do what's best for you.

@comingsoon786110 sorry to hear about your loss. And gosh, the timing of these pregnancy announcements is just so cruel.
@Zest11 thank you 💗 I hope you're starting to feel better after EC. Hope you get a good number of embryos.
@Lily1990 defo. The NHS owe you at least cyclogest. I'm sure some NICE guidelines came out last year saying that if you've had 2 or 3 miscarriages your gp should provide progesterone. Can't remember thw exact wording of the policy but maybe look it up then book am appointment and wave it in their face.
@RJayne I'm sorry to hear about your miscarriage. It's really hard when you believe in a plan and it flops. Hopefully we're all just a tweak or two away from success. I'd also reccomend the reproductive immunology group on fb too. The ladies there have a lot of knowledge too.

P.s. does anyone know if ivf clinics will let you transfer again the cycle after a miscarriage. So the next time cd1 rolls around again?

Also does anyone know if an ERA is worth it for ladies with recurrent miscarriage or is it just for recurrent implantation failure?

Oh and I'm considering the AIP diet. Anyone here given it a go?
Xx

Sending you so much love @Danni8 ❤️ it's a very surreal nightmare.
I think your clinic might want a natural bleed (not mc) to go into a FET. Do you usually go back to your normal cycle after a loss?

I don't think you'd need an ERA as you are implanting, but have you done Emma and Alice? I havent done AIP (but bought the book 🙃) have you had a hysteroscopy?

Tmi, but does anyone know anything about lube and would you recommend any? We've got ky jelly but I know that's not ideal... I'm also debating a hyfosy. I had a hsg years ago but we conceived quickly after thar so tempted. Has anyone done it at crp? X

@VenusStarr preseed is supposed to be a good lube for ttc.

I've had the Emma, Alice, 4 hysteroscopies and a laparoscopy. 🙃

Why are you considering a hycosy and a hsg? What do those look at?

Thanks ❤️. Yeah they do usually go back to normal quickly. I'll see what they say. If they want me to wait I might to an egg collection at another clinic because I'm done wasting months!

Cool. Thank you, have ordered 👍 @Danni8 dh said I'm clutching at straws... yep!

The hsg looked at my tubes which were clear back in 2019. I think crp do the hyfosy which is with foam I think? But thought it might flush things out. Clutching again! 🙃

What clinic are you currently with and which one might you go to? I'd definitely save your money on an ERA.