Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

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 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.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

@HarrietM87 I agree. I thought there was a link and still do but consultants disagree they say as long as it's controlled. And like you maybe I've just been unlucky :(
I've restarted meds this cycle. They've really messed me up though after having a break from them for 6 weeks. I've just been teary for the last couple of Days, no motivation and this weird symptom - a very sore nipple. Dr S has told me not to worry about it and will talk to me about it next week. Apparently it can be a symptom from the meds.
I hope you're pregnancy is going well xx

Thanks @Eeviee I'm actually wondering whether I should double up on the progesterone? I don't know if it'll do anything but this has been a bit of a characteristic of all my pregnancies and I don't suppose it can hurt. Yes, I guess you just have to wait to see what Dr S says. I guess if the tests say there was a chromosomal issue he might just say go again but I'm sure you could convince him to add the hydroxy if you really insist. I'm with you on IVF, if it doesn't work out this time for us, IVF with PGS and the kitchen sink of drugs will definitely be our next move. I need to feel like I've done everything I can. I hope you don't have to wait too much longer for the results, did they give you an indication of when it might be?

Welcome @Jorun I'm sorry to hear about your losses I hope you are recovering, it's just totally devastating. This group has definitely been a comfort for me. I'm with the others as you know the embryo was ok, it definitely sounds like something else might be going on. I'm not surprised you're frustrated with your IVF consultant if he's prescribing other things for non-NHS patients, that makes no sense at all. If you do decide to go with Dr S when you make the appointment he'll give you a list of the tests he does so you won't need to repeat those you've had and there are definitely some you can get done elsewhere which he'll take into account, although the NK cells is the key one which you'll need to get done with him.

@peperethecat glad to hear your appointment went well, hoping that the clinic reopens for you soon!

x

@Countrygirl220 Mr S always recommends doubling cyclogest if you have spotting/a bleed. I’m sure it can’t hurt.

@Countrygirl220, I have seen clinical trials which used 1200mg progesterone in 24 hours as a maximum. Having said that, I would urge not to increase the dose without checking with your clinician, it's a medicine with it's own set of side effects. Is there anyone you can call to consult??

thanks @HarrietM87 I think I'll do that.

@Jorun I'm sort of in a funny doctorless situation at the moment because my gynaecologist has basically shut down his practice to focus on the NHS (understandably). He's going to squeeze me in next week for a scan (if I make it that far) at his NHS hospital. I know that if I ring the EPU they'll either say come in and do the HCG blood tests or maybe a scan but if it's too early, then I'll literally be in a flat spin and really anxious for a week and I'll be no farther forward apart from more stressed and worried that I've contracted Covid from going to the hospital on immunosuppressants. Or alternatively, they'll say there's nothing they can do and I should wait and see what happens. So all in all I think I'm just going to wait and keep my fingers crossed.

As an aside though (and sorry if it's TMI), does anyone have a view on whether the front door (as it were) is more effective than the back door for the cyclogest? I've been using the back door because it's less messy but I'm wondering whether I should switch! Any thoughts?

@Countrygirl220, was he your doctor before covid? If so, I believe he still has duty of care despite the current situation. I would try to contact his secretary and ask him/her to pass on the message as a matter of urgency. Secretaries are usually very good to deal with.

Regarding your front or back door, it really doesn't matter. Use whichever way is most convenient.

I always use “the back door” 🤣 much less messy. It doesn’t make a difference re effectiveness.

@Jorun yes he was, I've managed to get through to his secretary and she's going to ask so we'll see, but I think I should do it anyway.

And thanks both for the advice re. the backdoor/front door. It sounds so ridiculous but things just keep popping into my head as to what could possibly make a difference. I think I've read to much on marginal gains theory 🤣

Fingers crossed you will get an answer soon! Keep us updated please 🌹

Regarding pessaries/suppositories: Cyclogest is formulated for both back and front, while Uterogestan pessaries more effective front, although I have seen nurses recommending them both ways. I totally understand what you mean..all I could think about when I was pregnant and spotting was what can I do to stop this...so I've done all of my research then 🥺

Ladies for those of you who are taking hydroxy, how much are you taking and how long before ttc did you start it? Also any side effects and did you get your eyes tested? Thanks

@Jorun welcome to the group (that no one wants to be be in 😞) I'm sorry to hear of your losses, this group is very supportive and everyone is lovely. X

@Countrygirl220 I think upping your progesterone may be a good idea, have you spoke to the nurses at the clinic? I tried back door once but never again as I found it painful 😣 But I suppose we are all different!

@Eeviee, thank you!. Also, if you want to read a little bit more on hydroxychloroquine, this is a good starting place: bnf.nice.org.uk/drug/hydroxychloroquine-sulfate.html. For more in depth info, can have a look at a manufacturer's summary: www.medicines.org.uk/emc/product/477/smpc
One thing I'd say, just don't freak out at the list of side effects, they won't happen to most people. But I'm of a thinking that knowledge is power, so it's good to know about meds you're taking. One thing I would definitely suggest is to check your eyesight (when able that is! None of the opticians are open)..

@Eeviee obviously I've not started hydroxy yet as he isn't prescribing but its supposed to be in your system for around 2 months ( I took it as 6 weeks from ppl earlier in the forum) and 400mg. Dr S said as part of it, you'd have to get your eyes tested every year you were on it.

Hope everyone's OK. I wrote a really long msg the other day and pressed back and nearly threw my phone across the room 😂.

Been thinking of you @FrannyAnny82. And I actually preferred the front door as back made me really uncomfortable @countrygirl220. I know that RMCs often say 400mg morning and night which is a lot. I dropped to 200mg in last pregnancy as the side effects were awful for me. Would much prefer clexane to that. Mr S said 200mg would also be fine.

Katy x

Hi everyone, thank you so much for all your support, your kind words really got me through this last week xx Nuchal scan at the clinic revealed lots of signs of downs so it's pretty much 100% now. The nurses were amazing, the whole experience was a bizarrely positive one. I guess it gave me answers.

Then the good old NHS came bumbling in. After they cancelled my booking bloods days ago, today they finally realised I cant have my planned CVS tomorrow without them. But I need it to happen because my tfmr is on Friday and we need to know which type of downs it is. I'm having to go to a clinic because the hospital wanted me to deliver!!!! I burst into tears and they're going to try to rush the bloods through.

Welcome @Jorun and sorry for what you've been through. I personally can't recommend Dr S enough. Once I've healed and saved up we'll definitely be sticking with him. Unless the downs turns out to be the inherited type in which case it might have to be IVF. I'm at the point where I would use donor egg and sperm. Xx

Hi everyone, sorry to butt in, I haven't posted in a while but I just wanted to update to say I had my little boy 💙 without the clinic and this thread there is no way he would be here, I hope he can bring some hope to you all too while you are still on this horrible lonely road 💐 For those who don't know my history I had 3 mmc and 5 chemicals (2 while on the plan). I was found to have high TNF alpha cells which I took humira injections for, plus high and aggressive NK cells which I took pred and intralipids for, along with the usual cyclogest, vitamins etc. DHs spermcomet results weren't great either, around 40% damage, but we got there in the end!

@FrannyAnny82 I am so sorry to read your news 😥 it was, and still is, my biggest fear that there will be something wrong with the baby, I am so sorry it is happening to you, I hope profA could give you some clear answers today and if it's not good news I hope it is at least definite news and you are not left with any horrible 'what if's' Thinking of you 💐💐

I wish you all best of luck and strength to keep going, you will get there in the end ❤️

Congratulations @Chickjen such wonderful news! You must be over the moon. ❤️ Prof A was amazing, he really helped reduce the trauma of it all xx

@FrannyAnny82 I’m really glad to hear you had your scan with the prof and it was some help. He is such a lovely man. I’ve been thinking of you lots.

@Chickjen huge congratulations!

@FrannyAnny82 thank you for updating us. You’ve been on my mind a lot. I’m glad that you have answers and that the clinic were so supportive. And I’m sorry you’ve had such a terrible time with the NHS...not what you need. Sending you love and strength xx

@Chickjen huge congratulations on the birth of your son!! Your story has really given me some hope today. My husband keeps telling me to be be patient & we’ll get there in the end & you’ve showed that to be true ❤️

@Countrygirl220 I have everything crossed for you!

And welcome @Jorun and sorry for what you have been through. To echo the others, I have found Dr S great so far and feel like we are finally in the right hands after 3 miscarriages.

@FrannyAnny82 I’d actually missed your longer message where you explained about the NHS cock ups when I commented last - that is so rubbish. Thank god you persevered - so you’re having the bloods and the tfmr will be under anaesthetic?

I hope it all goes as well and swiftly for you as it can and you have time to process it all and recover.

Evening ladies.

I've been busy with various doctor's appointments over the last few days. Both gynaecologists I saw identified a couple of missing elements in my patient file, so I need to be tested for the second MTHFR mutation and my husband needs to be tested for both, I need an HSG and my husband needs to do another sperm analysis to check for DNA fragmentation.

The good news is that the gynaecologist on Monday has pulled strings with the internal medicine doctor who is going to test for NK cells, and I now have a telephone appointment with him for next Wednesday. (The original appointment was scheduled for July.)

I don't know where I am in my cycle so I'm going to start temping again to try and work out whether I'm currently pre or post ovulation. My HCG was down to 23 this morning but I'm pretty sure I ovulated when my HCG was higher than that the last couple of miscarriages. I need an ultrasound and an HSG in the first half of my next cycle, and then apparently the biopsy needs to be done during the luteal phase so I'm really hoping the lab will be back up and running after my next ovulation.

I really want to try again and I'm gutted to have to sit a couple of cycles out but I also really want answers, so...

Thinking of you @FrannyAnny82

@FrannyAnny82, what an awful time you had...as for the NHS, I love them and work for them but it isn't perfect, especially when it comes to gynae/reproductive services..Coronavirus also massively messed everything up!! not what you need at the moment! Really hope it's all seamless from here 🌹

Wanted to thank everyone who recommended Dr Shehata, took the plunge and contacted his office today! Was debating last night about finding someone privately who would just prescribe some stuff empirically without having to undergo expensive tests (pred/enoxaparin/aspirin), but I think I need to know exactly what's wrong with me! Just hope he will be happy to support me despite me doing my fet and scans with a different clinic 😥

@Eeviee I'm taking hydroxy and I've been taking it forn7 months now. Apart from tasting very bitter I've not had any other side effects. I'll be having a check up for the eyes once it's been closer to a year.
Hi to all the new joiners and sorry for your losses

@Chickjen congratulations 💙

@Eeviee I have been taking hydroxy for 8 months now. You have to take it for 6-8 weeks before trying again. The normal dosage is 400mg but it’s been reduced to 200mg during the COVID outbreak. Dr S recommends an eye test after being on it 1 year. Like @Gooe I agree it tastes disgusting (although the clinic swapped them to a different brand for my second batch and they were yellow and didn’t taste of anything 😂) I don’t think I’ve experienced any side effects but since starting hydroxy I’ve yet to fall pregnant again 🤷🏻‍♀️ Xx

@Jorun I'm so glad you've taken the plunge. They're all really great.

I think it's just my local hospital that sucks. They refused to do the cvs today because of the cock up over the bloods and hadn't a clue when I asked about getting the remains tested. It was just awful. They disagreed with everything Prof A told me - despite the fact he's an NHS consultant himself, and then I just got left in a baby changing room for an hour while the poor midwife tried to find a pot for me to bring the remains of my baby back in.

Thankfully with help from the clinic we found another hospital in Kent that agreed to do the cvs and the staff couldn't have been more amazing.

Am glad you're making headway @peperethecat, it sounds like things are happening now which is good.

@HarrietM87 I've got the tfmr tomorrow under a general and am absolutely bricking it! I've never had an operation before. Just trying to remind myself that the alternative is to deliver at 13 weeks and I'm too much of a wimp for that xxx

thanks everyone for your advice

@FrannyAnny82 I'm really sorry to hear what a nightmare you've had, there are really no words. All I can say is that am thinking of you and hope that you are taking care of yourself ❤️

@Chickjen huge congratulations these stories really us hope

@peperethecat glad to hear things are moving along with all your appointments, something to focus on

Hope everyone is staying safe x