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

@Jorun forgot to say, glad your appointment went well. The tests are expensive but are really worth it, so much better having that information. X

@Eeviee Are you French? I'm not but I live in France so I get the same thing when I type on my phone. That's why I noticed.

@Eeviee I'm glad your appointment went well. That's pretty much what he said to us. And good he said he'd move you to the Hydroxy, can you get started straight away? This is such a hard journey between couples, we have a slightly different situation in that I've turned into a nervous wreck and am anxious and OH really struggles to deal with my anxiety and thinks I need to be more relaxed, so we struggle with that sometimes. I think we've best managed to resolve it by having a big deep and meaningful where we both get how we feel out on the table - with the intention of making a plan. Although for me it's one of those where you have to pick your moment! Driving has often been a good moment as there's no other distractions. In fact, one of our best chats was a 2 hour chat in the IKEA car park.

@Jorun glad your appointment went well as well.

@Hippo20 welcome but sorry you find yourself here. We (or I) just felt we were running out of time so wanted to keep going and the initial pred is only 10 days, so we just totally self-isolated for that. I then found myself pregnant, came off the pred (because I was scared) but then went back on it and we've just not left the house as we both can wfh and are getting online food deliveries, so I think it's about how much you are able to isolate yourselves.

A little update from me I'm feeling a bit crap as I have had some brown mucous'y discharge, just can't believe it a few days after the scan :( I rang the EPU but they said they can't see me unless I'm referred by a GP and that I should monitor it for a few days. I'm already on double the progesterone so I'm not sure what else I can do? Has anyone else had anything like this? I'm literally so anxious, it's so hard to concentrate and I feel like I need to go to the loo every 5 minutes... ahhhh.

Hope everyone else is keeping safe x

@Countrygirl220 I just had this exact thing at 12 weeks and got a private scan that night which showed the baby was okay. Dr S advised double cyclogest and to stop the aspirin then wanted to see me himself four days later. Despite what happened in the end, the baby was absolutely fine.

I'm okayish thanks @Eeviee. The shock is starting to wear off and the heartbreak is setting in but just got to give myself time. Keep getting panicked about having so much time off work but my brain won't function.

This mission has all but killed our sex life! We only dtd when we have to, we're too traumatised the rest of the time! I'm constantly asking him if he still fancies me. I can't remember what it's like to sleep together just for the sake of it. What a depressing thought. X

@Countrygirl220 I had that in my last pregnancy and all was fine. Are you still on the aspirin? I’d stop that if so. I had a really big bleed with this one at 10.5 weeks that was accompanied with awful cramps and I was devastated but it turned out ok. It’s so awful having to wait - can you get a private scan? My EPU sent me to A&E who then wouldn’t scan me, so I booked a private one. The reassurance was worth the covid risk to me - if it had been bad news I could have weaned off the pred.

@FrannyAnny82 you’ve been through the tough first trimester and then a huge trauma - it’s so not surprising that you might lose libido for a while. And never mind the truly weird scenario we are all living through on top of that. The most important thing is recovering and getting yourself back, and then you might feel like sex again. It will happen. You’ve been so brave xxx

@Hippo20 re the pred, I agree it’s about how much you can minimise the risks. My DH and DS completely self isolated with me so I felt like the risks were minimal. Apparently 25mg of pred up is considered a high dose/where patients are advised to shield (I saw some NHS advice), so if Mr S is saying 15 now then I think the risks are lower anyway.

Thanks @FrannyAnny82 & @HarrietM87 that's a good idea, I think I'll investigate a private scan place tomorrow if I can't manage to get a referral to the EPU. It is just total torture, I just keep googling and it seems to be some people are ok and some not. Still I suppose there's nothing I can do except wait it out...

@FrannyAnny82 I'm so sorry about your loss, you've been in my thoughts. I can't imagine how painful it must be for you but as much as it's a cliche I think time is the only healer. It's actual grief and you deserve the time to go through it, without any other pressures. Hopefully, your boss is understanding and has said to take all the time you need, it's really all about what you think is right for you now, sod everything else x

@Countrygirl220 It's in any reassurance my friend had similar brown discharge/mucus at around 10-11 weeks and was told if it's brown it's just old blood and she was absolutely fine. I know what you mean they when you google it's always 50-50 with peoples experiences so maybe a scan will reassure you.

I'm having quite painful cramps and sharps oains on my left side, bum and now leg - almost like sciatica. Is this normal because of the 3-4 follicles on that side? I'm about 6dpo.

@HoldingOn2Hope thanks for sharing that, positive stories definitely help, it would be great if I could be one of them for once. Its just such a nightmare every little thing that's a bit outside the norm just raises the anxiety levels and now coupled with the fact that I have to run around, jump through a 1000 hoops trying to convince people to give me a scan whilst on the other hand being scared to actually go to the hospital or anywhere with other people is not really helping :( Anyway, just need to breathe I think...

Ref. your pains I've not done the super ovulation programme so I'm not super familiar but I have had it a couple of times when I've had sharp pains on one side after I thought I had ovulated which subsided within a couple of weeks. I actually thought it could implantation pains, but it wasn't all the time, is your pain constant? Maybe it's a worth a phone call to the clinic?x

Thanks very much @Eeviee. You are so knowledgeable! I actually felt a bit overwhelmed by what to do/take for the best given that I'm on the baby asprin and now the progynova so I luckily managed to get a phone consultation booked in yesterday morning with a nutritionist that I saw earlier in the year. She told me to start taking NAC and Alpha Lipoic Acid right away and to focus more on 'eating the rainbow' than having animal protein until tomorrow's scan. She also gave me some meditations to do several times daily. Pending how tomorrow goes, I'm going to speak to her again on Friday to come up with a plan. Hard when you're on meds as you don't want to do anything that will cancel out/damage anything else.

Partner-wise, I think this whole situation is very difficult @Eeviee. We have always had a tough time after miscarriages. I feel like he doesn't know what to say to me/how to be around me and eventually he ends up getting annoyed when I can't snap back to being myself after a number of weeks have passed. And the whole thing is a passion killer. Now we only really have the timed sex which makes me so sad when I think about it! You are definitely not alone.

@Jorun that's interesting that you have the opposite issue with lining. Such a bloody minefield isn't it. Happy to hear that your phone consultation with Dr S went well.

@Hippo20 my husband and I are both lucky enough to be able to work from home at the moment and for the forseeable future so I felt like it was as good a time as any to start superovulation given that we are not seeing anyone (apart from Dr S!). Also if this continues for the rest of the year, I'm not happy to put TTC on hold for that long given that I'm 37.

@Countrygirl220 I am thinking of you and can only imagine what a faff it is trying to beg for a scan and worry about going to the hospital on top of already being worried sick. Keep us posted.

@HoldingOn2Hope I hope you're ok. I have obviously only done the superovulation once and had lots of side twinges and then a painful ovulation. But nothing in my bum or leg. The nurses have always been lovely when I've had a question so I'd definitely give them a buzz.

Just realised I've written an actual essay. Hope the rest of you are doing ok. X

Hi ladies,

The pain seems to have gone, my legs still feel achy so I think I might be out for this month as they always do when I'm due on. I'm 7dpo no symptoms and no cm.
Hope you're all well this eve xx

Morning all, I hope you're all OK.

I'm keeping my fingers crossed for you and holding on to hope @holdingOn2Hope.

Welcome @Hippo20 but sorry you find yourself here at all. From reading the messages, I'm sure you can see these ladies are quite awesome 😁. This thread is and continues to be quite the lifeline for me.

A belated welcome and glad your appointment with Mr S went well @Jorun. I found mine exactly the same if that helps?

@Countrygirl220 outrageous they wouldn't give you a scan. I hope you get some clarity soon lovely. Horrid waiting.

@Eeviee I am quite lucky in that my partner is quite talkative but I also took myself to places where I could talk. And told my partner about those which also pricked his interest on occasion. We've thought about writing a book as there's really nothing out there from the male perspective so I'm not surprised it's hard for him to talk about it.

For anyone interested I'm booked for the covid antibody test at the clinic in just under two weeks' time. They might give me the pred if I've had it then as only on hydroxy for now. Here's hoping.

How are you feeling @harrietm87? You must have your scans soon.

I hope you're as OK as you can be @FrannyAnny82 ❤. I really felt the pressure to rush back but it was imagined by me alone. Take as long as you can.

Katy xx

Morning ladies. Just been for blood tests to check my estradial and LH levels, and this evening I have an ultrasound to see what my dominant follicle and lining look like. If they look ready then we will do a trigger shot in the next few days. Eek!

@KtAgs Thank you, I feel perfectly normal and the no cm has made me thing it will be a bfn this time round. But here's to hope!
I didn't realise the clinic were offering the covid antibody test, how much are they? Dr S prescribed me the pred last week without any hesitation. Ok on a reduced dose though. I'm sure it's made my skin feel better and a lot clearer ;)

He would not prescribe it because lockdown happened before we got my blood results so to put me on immunosupressants during a time of infection risk seemed a bit dangerous. But for those already on it, he continued prescribing. I've only been on the hydroxy for a week or so after signing a waiver.

Good luck with your scan later @peperethecat. Exciting times!

@HoldingOn2Hope I’ve had ovarian cysts in the past and got leg/bum pain with those so almost certainly related to all your follicles! I don’t think you should read anything into symptoms/lack of them at this stage - in my bfn cycles I had loads of symptoms and nothing at all this time when I did conceive. I was so shocked to see the lines and then convinced it would be a chemical.

@KtAgs I’m 15 weeks now and should be seeing Mr S for a scan and intralipids next week but think I’m going to cancel. I basically don’t believe that the intralipids do anything, certainly not at this stage, and I live so far from the clinic and have to get a taxi there etc and just don’t think the risk/benefit comes out in favour of going there. I’m sure it won’t go down well.

Hi ladies, sorry for the lack of posts. I’ve been reading them all but it’s difficult to remember everyone’s journeys and/or know what to say 🙈 I hope everyone is doing okay?

I’m sharing this as it was news to me as of 2 mins ago that we no longer have to reduce the hydroxy to 200mg, we can go back to the usual 400mg per day. Someone on Facebook mentioned that the clinic’s policy had changed and when I checked the website there was an update on 7th May. I’ll post the link here incase anyone hasn’t seen it - www.crpclinic.co.uk/coronavirus-update/

I’ve booked a telephone appointment with Dr S on Monday to ask to start superovulation. I’m convinced that I won’t have fallen pregnant this month so just want to focus on what’s next xx

@HarrietM87 Actually that makes sense in my last pregnancy I had quite a large cyst, Drs weren't worried about it and said it will jus go.
You're right I shouldn't be looking into symptoms so early on, I've been quite good and positive for the last few weeks but last couple of days got me down. I think it was my best friends pregnancy announcement. We try our best with fertility diets, vitamins etc and they are both smokers, her partner smokes weed too 🙄 and she told she doesn't take vits as they are a Waste of money. She been txting me for the last 2 days about how hard she's having it with morning sickness and nausea.
How many intralipids have you had? Are they monthly?

That makes sense @harrietm87. I think the intralipids are a complete waste of time anyway. I know the braverman clinic don't use them in the US. They came out with a statement about it earlier in the year. Its never a good sign if the US don't offer a treatment. How are you feeling? X

Eek, I am having intralipids tomorrow. Oh well...

Oh gosh - I didn't mean to make anyone feel bad. And to be fair I will still take them @peperethecat. You don't get much of a choice with Dr S - at least in the first trimester. You either do his treatment or not at all. But evidence wise IVIG makes more sense but so expensive!

That's so hard @HoldingOn2Hope. People have no idea what we go through do they? It's the same with some of my pals too. And family. We have a big Irish fam and we were on a family zoom the other day and several people were complaining about their children. My husband funnily/spitefully (you pick! 😂) said: 'OH. Moaning about your kids are we?' They all shut up after that. Quite amusing. I'm not surpirsed you're symptom spotting considering that from your friend. It just doesn't feel fair does it? X

@peperethecat I had them at 4, 8 and 12 weeks. The reason I’m not convinced is that Mr S‘s NHS patients don’t have them and from what I’ve seen (in the unscientific study of the pred thread over the years!) they have just as much pregnancy success as his private ones. As @KtAgs says, you don’t really have a choice early on as a private patient but if I’ve got to 16 weeks and have been fully weaned off pred for 4 weeks and the baby is fine I just don’t see why they’re needed at this stage.

Why are you having them?

The internal medicine doctor who I'm seeing tomorrow has suggested it. He and the gynaecologist think it would be good to try one cycle with Ovitrelle and intralipids and if I don't get pregnant this time we'll do the endometrial biopsy to see if I have high NK cells. They seem to be just trying stuff out to see whether any of it works, but they don't want to try everything at once. Frankly I'd paint myself green and dance naked under the full moon if they said it might help!

Just waiting for my ultrasound now.

Just wanted to say thanks for all the support this week. I’m back from scan number 2 and the lining has gone up from 4.98 to 8.2 so feeling much happier. And they did the trigger shot in the clinic so it saves me a job. @HoldingOn2Hope @HarrietM87 hope you don’t mind me asking, but do you/did you try and do the timed intercourse more than once a day? Trying to figure out what’s optimal...

Also, I’m being moved off the steroids and on to the hydroxy in line with the changes that @Wishing5tar mentions above. I start the hydroxy tomorrow and will take along with the pred this cycle. And no more pred from next cycle onwards. Can’t say I’ll be sad to say goodbye to the hunger and the sleepless nights! Dr S said the hydroxy has less side effects, have others found that to be the case?

Hope you’re ok @HoldingOn2Hope - it’s really hard to keep the chin up sometimes...esp when you’re getting texts like that from your friend. One of mine goes on constantly to me about how her partner only has to look sideways at her and she’s pregnant..and she knows everything that’s happened me as well! X