Immune/NK issues - aka Pred Thread no. 23!

[Chickjen]

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

Hi @chlo04 what tests are you using? If you are using FRERs they really are very sensitive and I'm sure would pick up even a very faint trace of hcg. If you really are worried I think the only way to tell for sure is a blood test.
It could so easily be the meds affecting things, the cyclogest especially is known to delay AF, and we all get affected differently ❤️

Hello All

What's everyone's take on visiting a Zika country? I need a holiday but worries about zika.
I don't want Mr S to say he can't carry out tests etc or I can't ttc if I've been to a zika country.
Life feels as if it's on hold 😭

Really worried that I've made a big mistake. Nipped into Boots today for my flu jab - I thought it would be best to have it now as the FET is at least two weeks away. Mentioned it to DH and he got really cross, asking if I'd checked with the clinic. I just never thought to - I get it every year and, tbh, I can't afford to go off sick: I work for an American company with American sick pay policy. Three days paid (I've already taken one because of a MC earlier this year) and then onto SSP. DH's point was that I'm going to be on treatment to suppress immune system soon, so probably not a good idea. Have I done something really really stupid 🙈

@HoldingOn2Hope With zika the risk is that you'd catch it and then the baby may have problems - micro encephalopathy I think it's called. Even if you stopped TTC for 8 weeks (I think it's that) men have to stop for longer as doctors think it can be transmitted a bit like an STD. Can you go somewhere where there's no risk? I had to sign a form for our fertility clinic stating that I hadn't been to a zika country for 8 weeks and DH for 6 months as they think the risk is too great, but obviously it's completely up to you if you're TTC the natural way.

@KittyKatSmile hi and thanks for responding. The RPL clinic at St Mary’s advised me not to even take low dose aspirin, as because I don’t have a blood clotting issue, it could actually have a negative effect on implantation 😕. Did you/ have you noticed any side effects? I’m also worried about it causing spotting if I do manage to hold onto a pregnancy.
@Eeviee dr Gorgy also said that clexane can work to further dampen the effect of high NK cells (on top of the recommended LIT, intralipids, pred & IVIG!) so it’s reassuring others have been told this too

@chlo04 it sounds like a weird AF as if you’re using sensitive tests they would pick up even a little hcg as chickjen pointed out. I don’t know why your AF is different though, I’m sorry I cannot shed more light on it. Bleeding for me has changed also. My AF lasted 7 days. I’m now getting bleeding mid cycle also. Plus my ovulation has come forward by a whole week (from CD19 to CD12). So I guess the supplements and pred I’m taking is having this effect.
Sorry I can’t be of more help. Try not to worry though as if it was ectopic there would be enough hcg for a hpt to pick it up.

Hello,

First time poster, hope you don't mind me joining in. I'm currently on my 3rd pred cycle after two MMCs this year, one at 9 weeks and the other at 11 weeks. Both measured one week smaller. Dr S has diagnosed me with very high NK cells activity, but all else seems OK.

DD is 5 and we are trying for number 2. We conceived her and the two MC pregnancies very quickly, but since starting the pred this hasn't been the case. Is it a bad idea to try a 15mg dose for the next cycle and go up to 25mg if I get a BFP? I'm still in my 2WW this month but I'm fairly sure this one hasn't worked either. I'm sure the clinic would advise against it, but surely it can't be a one-size-fits-all protocol? Has anyone lowered their dose before getting a BFP and gone on to have a healthy pregnancy?

@wewin So sorry to hear you're having a difficult time. I hope things work out for you.

Hey everyone! Have spent my evening reading through this board (after reading one from 2011 that I found on google. So glad the board has carried on to 2019!!)

I am 31, have had 4 miscarriages all at 6 weeks or before. Have only ever seen 1 heartbeat with my first loss. All my tests have come back fine, except for nk cells. I saw Dr S privately in desperation and have high/aggressive nk cells. Although, before the blood test I was extremely stressed after some family issues and a row with my Husband in ikea (lol) so wondered if stress can sometimes alter the result. I didn't really 'gel' with Dr S and sadly found him patronising and unhelpful. We struggle seeing him as it does leave us very stressed and unhopeful that he will help us, which was such a shame.

Anyway, after a bit of time after my appointment I saw him again on NHS (as we couldnt afford the £10k of treatment/scans privately!!) and got given the steroids, progesterone for the protocol to try.

Last month was my second month of taking the medication. I got my period 2 weeks early because I got 2 positive ovulation results and took the medication too early and had to stop. Anyway, it seems to have really messed up my cycles!

Has anyone else found that taking the steroids & progesterone from ovulation has changed/shortened their cycle? I'm wondering if it is the progesterone.

Has anyone had success taking from a very early BFP instead?

We were last pregnant in December 2018 also, so very worried about now having trouble conceiving too, as if RMC wasn't enough to worry about!

This whole journey has left me a totally changed person to be honest. I have depression, feel sad all the time and have lost all my confidence (not that I had loads to start with!)

Anyone out there going through the same would be great to chat x

@opalescentblue and @Lulu19881 I haven’t started on the protocol as yet so no experience to share but just wanted to say welcome and hope you find some info and comfort here while you’re on this dreadful journey. From what others have shared it does seem like the pred can delay conception and affect cycles but then you have others like @Chickjen who wasn’t affected by it. It’s def a concern of mine and haven’t even started on it.

Welcome @opalescentblue and @Lulu19881

You may have already read about my experience (I joined this board around March of this year, mid 4th MC) but relevant to both of your questions. I stopped the pred as I was struggling to conceive and had pretty rough side effects when coming off it as well. I got pregnant, took the pred from BFP, miscarried and was basically told by Mr S that it was my fault. It's got to be your choice. I know there are people on here who will say if you're going to go on his protocol, you need to stick to it. I get that. I believe he does sometimes advocate a break for a month, but maybe that should be on his advice. How old are you? Does the timing worry you particularly?

And @Lulu19881. I didn't really gel with him either. In particular after the conversation above. In fact he's never had a penny of my money after that day. That said, I did then change tack and go for IVF but ensured that they followed the same protocol at my clinic. Which they did, but in a much kinder way. I don't know, I am usually more results driven than emotional but there was something about him. His 'wolfish' smile maybe....

Good luck to you both.

@kittykatsmile Oh yes I did see you pop up when I was reading through the board Sorry to hear he said this to you - tackless! I was actually told last week by my GP to “give up and consider adopting”, so I know how hard harsh words can feel! I know that you do have to stick to protocols but I also feel like I don’t have 100% faith in it and I’m not sure why?! I have spoken to girls that have taken from BFP and it’s worked - so I guess like everything it just really depends on the person. Gosh I wish there was just an easy solution!

I am 31 but have been trying for almost 3 years, so I don’t feel like I have time on my side and definitely don’t want to go through another 3 years of all this!

Haha, the wolfish smile definitely doesnt help!!! We both found him really odd and just not who we want to deal with whilst going through this!

I do wonder if nkcells can also stop conception as we now havent been pregnant in almost a year, even before the steroids!

@Lulu19881 I believe NK can also prevent conception as it attacks and prevents the embryo from implanting. Is your NK extremely high?

@zoe16 I think my nkcell result was 220 but they were aggressive apparently. The previous 4 pregnancies happened quickly though, just this time that’s taking longer.

@Lulu19881 I have definitely changed as a person, since my mmc at the beginning of the year I have not been myself. I believe I have PTSD and trying to deal with that has been a huge challenge. Also as you can see from the time stamp of this message, I don't sleep well due to anxiety. I've become very ratty and I can sense with my husband that I am very uneasy to be around a lot of the time, as I tend to snap over the smallest things. I've cut off friendships, and have completely isolated myself so that I can avoid any baby talk.

I think being on the protocol doesn't really help with it all either. I would love to be able to just get pregnant without having to do the OPK's, as I think this stress me out more and makes the whole baby making process so consuming. I feel as though my life has become dedicated to TTC as it's all I think about.

I too am finding it hard to conceive in general. It took me a while to conceive the one I lost and nothing since so I'm feeling pretty deflated about it all. Hope this helps you in knowing that you're not alone. And I am happy to lend a ear if you're struggling and need to vent or get stuff off of your chest. X

Welcome @opalescentblue and @Lulu19881 I'm sorry you both feeling frustrated with the protocol. I do think the pred takes a while to take effect, as in, you are not protected the first day you take the first tablet, but over a few months I imagine it to have a cumulative effect so it might be safer to make a few 'tweaks' after you have taken it for a few months. But before making any changes ask yourself 2 questions: apart from the pred, has anything else changed since you were TTC successfully? Are you too tense, are you using opk's and trying to time sex now when you didn't before, is your OH drinking more, anything, any small detail. And secondly, if you were to try from bfp but miscarry would you feel worse than you do now? Personally I made a decision a while ago that I would rather keep having mc's than go through another spell of not conceiving, so if I hadn't conceived this time (month3) I would probably be thinking along the same lines and tried a lower dose (as I did have a loss when starting a few days after bfp)

@MairMum18 you are describing exactly how I feel. I recently did an online CBT course and it really helped, not so much what they teach you, but the chance to talk to someone about how sh1t all this is without feeling guilty or a burden, it has really improved things with DH, I'm much less ratty. It was IESO if you are interested, it's through the NHS but you don't need to be referred you just go to their website and sign up (although I think it might depend if they cover your area)
And re the opk's, I didn't use them I just tracked my temp, when the temp rises you start the pred, but you don't get that stressful build up to O.

@ginandtonicformeplease I think the NHS purposely give the flu injection to people with weakened immune systems as it is better to face the vaccine than it is to face full on flu while your immune system is low.

Hi @HoldingOn2Hope did you get an appointment in Coventry for the NK Cells endometrial biopsy?

I ovulated this week and have been given an appointment for Fri 1st. I need to book flights from Scotland, but should manage to get up and down in the same day. Like you, I'm nervous about what it's going to feel like and if I'll be okay afterwards. I'll be there on my own so am hoping I'll be okay to get back to the airport. I'm hoping to take the chance at the consultation to ask loads of questions about my rmc situation as well. Let me know how you get on. X

Hi @Chickjen thank you for your reply. I'm sorry to hear you've been going through the same emotional rollercoaster that I have, though I am pleased I'm not alone. I will definitely be looking into a CBT course, I didn't even know they existed online so to hear this has given me hope that I can start to deal with my issues.

I think next month I will not use OPKs and go from my previous months ovulation date (it has fallen on the same CD for the last 5 months) in the hopes that not having to obsess over and schedule TTC will make life a little easier. X

Hello ladies,

After a month of relentless travelling with work I am back. Thank God because my body cannot take it anymore. I want my routine. Thankfully not more traveling for me until next year (or at all if I am heavily pregnant! One can dream, right?) Not only that, my appointment with Dr S is tomorrow. I have mixed emotions. I have placed all my hopes to this appointment so I hope it goes well. My partner cannot come to this first one but I have all just test (DNA frag etc) so I hope it is fine. He is at a new job and he cannot take the time off. He is coming with me to the second one in 2 weeks.

@MairMum18 I am so sorry you have to go through this emotional havoc. As with @Chickjen I am exactly the same... especially the isolation part to avoid baby talk...

@Chickjen I am so happy everything goes well for you!! 😍😍

@Lulu19881 your message made me a bit worried. I hope the tests are not £10k expensive....

@MrsMargot Sorry to have worried you! Our testing cost was expensive (£1800ish) Paired with travelling, the medication and constant scans/drips, we worked out it would be close to £10k but of course everyone has different protocols to follow so I’m sure everyones pricing is different. I’m still paying off the nkcell tests from my credit card so we chose to see him on the nhs and just wait longer. Good luck tomorrow! Make sure you ask everything you want too whilst you are there too, as I had some questions I forgot to ask and they wouldnt let me email them over, instead wanted me to see him again... for another £195 haha

@WeeGi hiya, I also ovulated a few days ago so was hoping to call the Coventry clinic to make an appt for the biopsy. However I have an appt with Dr Shehata in 2 weeks and he is against the womb scratch and wouldn't consider it as part of his testing. He does the nk cells test through a blood test. Left me quite confused but I thought there's no point spending money on a test that he won't look into. His secretary said he used to do the womb scratch but doesn't anymore.
I have an appt with Prof Quenby through nhs referral so I thought that would be a chance to have it done then if need be. So much conflicting information it's difficult to know what to do.
On top of that I'm having to reconsider my holiday plans as this whole Zika virus is an issue for private consultants too. My nhs consultant told me to go wherever and not let zika be a worry.
It's so easy for some women to fall pg and have a baby whereas we know how it's such a draining and emotional process. Xx

@HoldingOn2Hope yes, I believe the NK cells in the womb are different to the ones in the blood, so the results probably wouldn't correlate.

I know how you feel with the Zika thing. It's my 40th birthday next year and I've been wanting to book a big holiday for it but some places I fancy have Zika so they're out. Lots of women live there having babies, but for me my anxiety would peak if I got a positive test in the time after the holiday so from that point of view I feel it's not worth it. I'm struggling to decide whether to book any holiday to be honest because if I got preg before it I wouldn't want to go. I've got to the stage of anxiety with everything that when I get a positive test I just want to take it easy and take no risks. It's taken over my life.

@Lulu19881 I know exactly how you feel. It's so tough isn't it. I feel a shadow of myself. I'm so weepy all the time, I have horrible anxiety, and I dont know how much longer I can go on doing this. If i was younger I'd definitely take a break as i feel my mental health is suffering, but I'll be 40 soon and I feel it's my last gasp. Trouble is, I feel I'm stuck between a rock and a hard place - to continue trying is fraught with anxiety and fear but to stop trying is filled with pain and heartache. Feeling so conflicted at the moment, not in a good place. Just started seeing a counsellor but not sure if it'll help. It's an awful place to be isn't it. Hope you're doing ok, sending hugs.

If anyone has any coping strategies they have, books that have helped, therapies or anything, please share, thanks.

WeeGi - Sorry to hear you are suffering too. I can totally relate to you and everything you said and I'm in the rock/hard place as well. To imagine no children in my future is TOUGH, but so is constantly battling this month after month. Thank goodness we have forums like this and can talk to people in similar situations - I often think of women who went through this before the internet and can imagine it was so isolating!

It's an awful thing to go through - when I had my forth loss I felt absolutely numb, from everything - hope, love, happiness and to be honest it's never really returned. I keep my chin up for my Husband and my parents, but I find it really tough when I'm alone. I have also been looking into counselling but I'm such a private person I find it hard to open up! Would love to know how you get on though as I'm sure it will help a lot! Always here for a chat and sending many hugs back :) xxx

Chickjen Thank you! Very glad to have found this forum, although I definitely wish none of us had to be here and in this situation :(

I have actually been having acupuncture this year and did wonder if that had hindered us not falling pregnant. Even though it seems to do wonders for other people, maybe it didnt agree with me! I have now stopped, as was getting worried about this. I've been stressed but no more than normal.

However, this month I am now on my SECOND period... which is frustrating! My OPK's said I ovulated early, so I took the pred and progesterone, then I did another OPK on my usual ovulation date a week later and it was positive again, so I stopped the pred and progesterone to ttc again. It seems stopping it made me bleed for a week (progesterone I'm guessing!) Few days after, another OPK positive and today I got my period - with a vengeance!!! SO that's a whole ttc month down the pan.

It's been a nightmare and seriously got me down. I think it's my fault for stopping the progesterone but I think I will try to get a BFP and take it from there. I test at 10dpo so could catch it early.

I just don't think I can even go and see Dr S, he was so unhelpful with me and I doubt he will be understanding tbh.

@Lulu19881 this is what I am expecting... it is not cheap but I really have put all my hopes on his treatment 😳. I hope everything goes well.

@WeeGi and @Lulu19881 I am sending you all my love. I know all about being tearful all the time but trying to keep chin up. I have not found one single thing that has helped. A combination of looking after myself, yoga and talking works sometimes. We are trying couples therapy ( so we can both keep on trying without going crazy) but it is not my favourite. I am such a private person. It could be that I do not gel with the therapist. It helps my OH though so it is good.