Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

Oh my goodness @hrtbrk2 that's terrible news. I'm so sorry. I'm also sorry for my delayed response as I'm usually quick to reply.

I don't know much about the procedures you're going through but it sounds really hard. I wish things were different for you.

One thing I would say is give yourself some time to be upset. As much time as you and your partner need. Then, take stock of your options. You just need to feel right now rather than making any definite decisions. Sending love to you both. ❤❤❤

Just catching up ladies, for some reason I stopped getting notifications of new posts on the thread 🤷🏻‍♀️

@hrtbrk2 I’m so so sorry to hear that 💔 sending you lots of love! Be kind to yourself & take some time to process - life sure can be a cruel at times xx

Hi girls,
I am reading you everyday, and I wanted to let you know that I am with all of you, as you were with me after my last miscarriages.
I could see that some of you, too many of you, are still dealing with losses and bad news, it makes me so sad you have no idea :( I am sending you all my love. I wanted to send individual messages, but it was too hard for me to realize that, one after the other, we were dealing with shit, again and again.
As hrtbrk2 said, I also used to think that things can't get any worse. I believe now that this isn't true at all.
I had a surgery last week (for another condition), with quite some complications, but I am fine now.
My partner and I can try again in a few weeks, but the excitation is gone completely.
Be strong xxx
Sophie

I'm so sorry @hrtbrk2, be kind to yourself and give it a little time to settle. I would recommend to look up relevant surgeons online, and the reviews, and contact their secretaries for timelines and prices. You might find some are cheaper than others, perhaps a little further from the London area. NHS will probably continue putting on hold everything they possibly can. Once you've had a few days for yourself, research might help you decide on the next steps. Whatever you will decide to do, it is going to be ok at the end.

Sorry to hear you've had some complications following your surgery @Sophfr17, hope you're recovering well 💕lots of love

I'm still keeping up to date with this thread although haven't contributed recently and just wanted to send big love to all of you! I'm sorry to hear all your news 💛 It's so tough. I'm still waiting to take next steps but decided after a couple of months of researching / deciding we can't wait any longer, to bite the bullet - we are having a first consultation with ARGC in a couple of weeks. Will share any info if anyone wanted to find out more about the clinic in comparison to Dr S who I haven't seen. I know some of you mentioned Tor Sandford which made me look into ARGC - so thanks for that. Hope you all manage to have a nice weekend in the sun xx

So sorry to hear this @hrtbrk2 - life is so bloody unfair and cruel. I totally agree that just when you think it can't get worse, it can. I've been thinking a lot about adoption and surrogacy myself lately. I spoke to a friend who has adopted two kids and she said she's so happy now (she battled NK cells for four years and ran out of energy and money). Listening to her gave me hope and made me realise that families come in different ways, and also that things get better eventually - whatever you decide to do next. I just wanted to to send a positive story, even if adoption isn't on your radar quite yet. Also, if you need a counsellor, ARGC put me in touch with an amazing former nurse who specialises in fertility issues and she's helping me so much. Shout if you want her details. Take care of yourself.xx

I'm really sorry to hear this @hrtbrk2 i felt like this when i had my last miscarriage. A feeling of loss of hope. But in time I realised there was something else in store for me and that kept me going. Not sure that other thing will work out but time gave me hope and strength. I hope you gain strength and hope and in time make the right decision for yourselves. Feel what you need to. You will get there x

Oh @hrtbrk2 how desperately unfair 😥 any chance it will go down by itself once you stop the prognova? Get yourself on the NHS waiting list while you think things through, you can always cancel if something else comes up, but worth getting your foot in the door now in case you want to go that route. I know it's a terrible blow, but it is just that, a blow, the fat lady hasn't sung yet 💐

Good luck @Sophfr17 I'm glad you are on the mend ❤️

Sorry to hear about the difficult time everyone has been having :( recurrent miscarriage is crap!!!

Was wondering if anyone is currently being prescribed preds without having the NK test done? Xx

@Lovemylittlebear I was prescribed pred for my last pregnancy which ended at 14 weeks. I haven’t had any NK cells testing but was planning on going to Coventry at the start of the year when my consultant said he would prescribe them anyway (it’s a bit of a trek for me so he was saving me the journey). I was only prescribed 10mg though which I know is a lot lower than prescribed normally. I’m hoping the Coventry clinic will reopen soon because I’m adamant to have the testing/advice this time.
Just hope I can hold off ttc long enough - I have major anguish after every miscarriage, and want to try again ASAP just incase im missing out on a “good egg” 😔

Oh jellycat I’m so sorry that is really shit!!! Xxx

Were you supposed to shield whilst on the preds? I kept my youngest two whilst on clexane, preds and progesterone and i think that is what worked as when I haven’t taken preds and clexane I’ve lost four.

South Wales is a bit crap for rm help. I always have to read the research myself and then go to a private consultant with info but I would love to be under someone that knows there stuff.

Hi girls,
I must take aspirin, lovenox and progesterone while being pregnant due to blood clotting disease diagnosed only in June after 4 losses (it didnt work for pregnancy no.5 because it was probably a bad egg, so blood thinning drugs would not have helped). I asked my consultant to add prednisone for the next pregnancy, probably next month, because we never know, and because I am ready to do anything before starting ivf at the end of the year. He said he would normally give it to me but, because of the covid, he doesnt want me to take it for obvious reasons.
Do you have an opinion about that? Should I insist? Shield at home when on it? For you ladies who take it, are you careful ++?
Take care all
Xxxx
Sophie.

@Lovemylittlebear we were holding out so much hope for the pred, and when we got to 12 weeks - actually had a sigh of relief. It’s probably that fact that’s made this time so much harder! I was convinced that I was done and couldn’t try again, but after lots of research I’ve decided to wait for the results and have some genetic tests and NK tests and then decide from there when it’s all on the table. I’m keeping my fingers crossed it was an unavoidable problem this time 🤞🏻

Completely agree about South Wales! My consultant is lovely in all fairness (only found him by going private mind) but with no dedicated clinic, I feel we are very disadvantaged.

@Sophfr17 - I would say it really depends on your clinical situation. I didn’t have to shield because I was only on 10mg, and I worked in a public facing role throughout Covid. I was super careful, only went to work - partner did all the shopping etc. Constant hand washing and made sure I kept my distance from people.
If I fall pregnant again and Covid is still around (more than likely) I will push to have the full dose. Even if I have to take unpaid leave for safety reasons and completely isolate myself.

Sorry @Lovemylittlebear I forgot to answer your question - I didn’t shield because my dose was low. I think anyone over 20mg would have had to but there was no specific guidance issued by RCOG or NHS.

I’ve missed loads on the thread but just seen your last post @hrtbrk2 - I’m so sorry to hear this. Thinking of you and everyone on the thread.

Oh jellystar I’m so sorry :( i didn’t know you were South Wales too. I know the NHS consultant I’m on the waiting list to see is crap. Last time round we waited almost 18months and I was pregnant with my son by then. We went to CRGW and saw dr Amanda o Leary. She was great and prescribed what I wanted without all the expensive tests. She’s advised not to use preds this time but I’m convinced these must have helped due to the recent loss on no meds.

Which private consultant are you seeing out of interest. Is it dr Beatty? Financially we have had to find a lot of money for my youngest who has recurrent uti issues and had sepsis a year ago. We would need to borrow on another credit card to see any of the mega specialists but I know the nk test is reasonable but they aren’t open yet for private patients (as far as I know?)

I’m quite keen to try again soon. I’m a sole trader and working through zoom atm but once the schools re open I’ll be expected to travel and work with children again and it’s bloody awful miscarrying on trains and in people’s homes so I kind of thought that maybe it’s worth one more shot now whilst I’m home and then waiting and paying out for a mega specialist if it happens again. I just need to work out whether I’m going to push for the clexane and preds.

Xx

@hrtbrk2 I'm so sorry you're going through this 😔 is there any chance you can get an appt with you gp to be referred for the op on the nhs Asap? Or to have another scan in a couple of weeks to see if the cyst reduces. I say this only because of the conflicting info I was given re my 'cyst' / 'heterotopic' - I'll never know what it is but it went. As if this all isn't hard and emotionally draining as it is, I'm so sorry 😐 Whatever you decide, be gentle on yourself xx

Those of you who are on hydroxy what are the side effects? I feel a bit light headed at time's so my friend who is a nurse checked my bp and it was low 🤔 it is usually a little lower than average but lower today. And I'm getting a tingling sensation in my back/shoulder it's odd but only started since taking hydroxy.

@HoldingOn2Hope, I've been on hydroxy almost 2 years. I'm fine now, but for quite a few months I had slight nausea after taking it, and various tummy troubles. It did go away though and no side effects now. It did put my autoimmune illness into remission.

Thank you all for your lovely thoughts ladies it really means a lot and this feed is such a huge support. I am just so devastated I feel like I've got to grieve the loss of my own hope - hope that this would eventually work was all I had left at times and now it's all over I have to let go of that in order to move on. If that makes sense.

@HoldingOn2Hope I have booked an app with my GP, earliest I could get even for tel app was 2 weeks and then I'll see how long the wait is. There will be a wait for a referral and then a wait for surgery so it's all just more time that I'm not sure I have the sanity for - but to be honest I think we've decided to move on now anyway as even if I have the surgery it'll be months before I'm ready to start again and I'm not willing to do SO again after how quickly the drugs progressed my Endo.

@Chickjen I did ask that about it going down if I'm no longer on the progynova but Dr S shut me down on that and said it won't reduce in size but I'm tempted to monitor it before jumping into surgery because this too comes with its own issues and risks

If I'm absolutely honest ladies, and I'd welcome your thoughts on this (Dr S's patients) im feeling really upset with the care I have received from the Crp clinic. The money it costs to go through this process is not insignificant and yet I feel Dr S has no care for us as patients. When he told me I had to stop last week I was understandably upset and he couldn't have cared less, he just kept looking at his screen, in fact he clearly just wanted us to leave so he could do his next app... there is always an assumption you will just pay for whatever they tell you to do, there is never a discussion on risks, options and side effects it's just 'take this, do this, don't question' ... I understand that to be as specialist as he is that the science and the data are what he is interested in but I really battle with the idea that you can specialise in a field such as reproductive issues and not have some compassion for your patients, bedside manner counts for a lot. @HoldingOn2Hope this goes in with your problems I guess too - not necessarily feeling like you trust the advice they've given because it's not correct or mistakes are made that are quite substantial. At that level we should have ultimate trust in them surely?

I know it sounds like I just need to apportion blame somewhere but I've felt like this since we first went for our tests and felt like I was just part of a long production line ... time to stop and move on, I'm just not sure I'm willing to pour any more money into a clinic who's approach to my care is so blasé.

@Everhopeful35 thank you for the positive story around adoption - it really helps and since we've made the decision I've heard this a few times- perhaps adoption isn't something to fear anymore but something to welcome as the means for me to become a mother ... one door closes as another one opens

@Wireless77 will do, that's a good idea thank you and is what I did when I found dr quenby in Coventry so def worth speaking to a few

Good luck to you all ladies, I truly wish you all a positive outcome in whichever form it takes xxx

@hrtbrk2 I completely agree with you re his manner/the care you get. It costs so much and you end up feeling like you’re on a conveyor belt. It seems to have got worse between my first treatment in 2017/2018 and then 2020. I’ve noticed he pushes “extras” a lot more (like that flipping inofolic) and I never got the sense my care was personalised. They never responded to my last email to them which really pissed me off. Ultimately it worked for me and so I’ve just sucked it up, but there are other clinics that do similar things and if the plan hadn’t worked for me I’d definitely have considered taking my money elsewhere.

@hrtbrk2 I totally agree with you 110%, it's how I felt after my mc, there was no follow up call or email. Nothing. Tbh the only reason I'm back there is because my nhs consultant told me to give it another shot with the hydroxy and that way I know I've exhausted all of Dr S's avenues. Also he said it was no harm in trying again while I wait for tests/results to come back and for AF to arrive which did last week. Even at my appt last week he was just 'do this and do that' and when I asked what if hydroxy wasn't to work he totally shut me down too! It pisses me off big time! At the same his confidence gave me a little hope.
I think you're doing the right thing with monitoring your cyst, I'm glad I had mine re-scanned as he had definitely got it wrong - not that he admitted it. I know this sounds silly but what if you went to your GP or A&E with unbearable pain to see if they can get you seen sooner?
There was w few more consistencies with Dr S last week, he told me a few months ago I would need to reduce gonal-f dose but then told me last week it was the correct dose. Progynova has been reduced and I don't know why so need to call clinic today - I mean if we are paying £££'s at least check the notes before a patient goes into the consultation. I didn't want to have a moan about him as I understand it's negative talk.
We are all here to support you, I know I would f have got through these lat few weeks without this forum. We have also looked into adoption last year and I had some paperwork sent to me earlier this year so it's also something we are thinking about. Virtual hugs 🤗 xx

It's interesting to hear your thoughts on Dr S. I had my appointment with him last week abc found him quite abrupt and arrogant, if I'm honest. It's hard to know who to put your faith in, isn't it. As someone who is new to this thread, does Dr S generally have a decent success rate? I've read so many glowing reports online but I also have a friend who was treated by him and had three more miscarriages. Also - separate question - I've been feel so low since my miscarriage three weeks ago that I'm considering asking my GP for antidepressants. Has anyone taken them while following Dr S's regime or when doing IVF?

@Wireless77 thank you for replying, it's just making me feel light headed but I don't know why it would cause my bp to be low. Hate pumping all these drugs into my body 😣

@HarrietM87 Hope you and bump are doing well xx