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

Hi @peperethecat God it was awful, so traumatic, I don't think it's something I'll ever get over. But at least I can start to work through it now. Thanks for asking xx

As soon as I feel well enough I'm going to commiserate with wine, soft cheese, uncooked meats and hair dye - living big.

Now the morning sickness has gone, I've not stopped eating.

Then if the CVS says the trisomy was the fluke variety we can try again. If not, who knows.

@KtAgs Haha, the bit about wanting a new womb and fanny made me chuckle - I really do hear you! Mine is a menace!

Again, thank you lovely ladies for your support. You're a fab bunch and none of us deserve what's happening to us. Sending everyone strength to keep plodding on xxx

Sending you lots of love, I'm sorry you had to go through that @FrannyAnny82 i hope your recovery goes well and you can enjoy wine, soft cheese and uncooked meat 💜💜

@FrannyAnny82 I'm going to break the miscarriage bingo rule about not starting any sentence with the words "at least" and say, at least it's done and you're not walking around pregnant but knowing you're not having a baby anymore. That period of limbo is so hard. Now your body will start to return to normal and you can take the time to grieve and process what has happened to you without having the operation hanging over your head. You've had such bad luck, and I really really hope that next time will be your time.

Never a truer word spoken @peperethecat That's exactly how I feel! I had quite a big bump and was so nauseous which was very distressing. I feel so relieved that I actually managed to get a booking - Dr S warned me there could be a backlog of up to a month.

Thanks @VenusStarr Rose and salami all round! X

@FrannyAnny82 I’m so glad to hear it’s over. God having to wait a month would have been so horrendous. Enjoy all of those delicious things and take time to recover. When do you get the CVS back? It’s all been so horribly unfair. A friend sent me some flowers when I had my third mc (mmc so had to have an MVA) and the message just said “better things are coming”. It meant so much that she didn’t try to find an upside in the shit that gone on but just had some hope for me for the future. I know better things are coming for you xx

Hi guys - been a bit quiet of late but keeping up to date with all of you lovely ladies.

First of all @FrannyAnny82 I am so amazed by your resilience and approach. I've thought of you often because when I had my late loss we had a frightening harmony test and I remember that week of waiting like it was yesterday. Take your time with the recovery - and like you say enjoy all the things you've been missing, I think you're amazing!

@peperethecat and @eeviee sounds good re. the new cycle - and a fresh start of course - have you ever heard anything about the idea that our cycles work in 'seasons'? It was something I came across when I was seeing a holistic fertility specialist and it was really interesting as it looks at how we should approach certain times like ultimate relaxation during week 1, which is 'winter' so your hormones are low etc lots of cosying up, and chill time, then when you ovulate its 'summer' and you're full of energy etc. Not sure why I'm mentioning it but just made me think. When I'd come out of MC's it really explained why I felt certain moods, lulls, or high energy levels at certain time's and may help you understand what stage you're at when things are a bit all over.

So I'm 2 days from re-testing on round 2 of pred/hydroxy and I'm getting the following side effects from the pred can anyone shed any light on whether they've had the same as I don't remember feeling any of these last month but it has to be the meds:

• huge indigestion after every meal, especially in the evening, like pacing around uncomfortable with a really gassy tummy.
• insomnia - like I can't get to sleep for a couple of hours after I go to bed and am having THE oddest dreams (I won't go into the one about the mouse sized donkey!)
• sweats - this is just today but felt like I was having a full on menopausal moment and then convinced myself it might be a covid temperature - it's not, I took my temp and it's lower than it was when I woke up
• irritation - like agitated, yesterday I wanted to rip off husbands head and feed it to the dog and today I'm mellow yellow.

Tell me these are all pred side affects mixed with hydroxy?

Have good sundays all xxx

@FrannyAnny82 I'm glad to hear the procedure is over, and you deserve all the wine soft cheese I cooked meats and hairdye possible. It's truly horrible what you've had to go through. Big hugs x

@peperethecat Thanks, i was so sure that my period was coming but I've had the most bizarre and horrible pain and distension in my lower abdomen since last night, ended up in hospital and have been sent home with cocodamol, no idea what's going on.

@hrtbrk2 I like your seasons analogy. I just don't know which season I'm in right now! From what I know, the side effects you mention are really common for pred, especially the insomnia, irritability and indigestion. I oddly had no side effects at all on the pred but I know it's harsh on the stomach (causing indigestion) , are you taking the omepraze? It also depletes melatonin which is our sleep hormone hence the insomnia. You could try drinking something called cherry active, it's tart cherry juice. Cherries are full of melatonin so it could help your sleep? x

@hrtbrk2 I didn’t have those side effects on pred (I just get raging hunger and a massive moon face 🤦‍♀️) but I think they are all classic side effects. Definitely insomnia is which is why we’re advised to take it first thing in the morning. Good luck testing!

@FrannyAnny82 I'm sorry to hear that it was really traumatic I can't imagine what you're going through, but I'm glad that it is over and you can start to heal. You definitely deserve all buckets of wine and cheese you like, sending you a virtual hug x

@hrtbrk2 I definitely have the insomnia, I wake up every night between 2 & 4am and it take ages to get back to sleep, and I also have the most vivid dreams although no mouse-sized donkeys as yet... I also am quite gassy but I actually thought that was the progesterone rather than the pred but I suppose could be either or both! Good luck for the test!

@hrtbrk2 I've not been on hydroxy but I've had every single one of those side effects from pred. That's why I find the 'trying' so stressful. I can't sleep and if I do I wake up at 4am and don't get back to sleep. The rage is strong and my stomach is a mess from the pred. And TMI but the cyclogest hurts the other end for me. I'm like an old granny with a bottle of gaviscon and senocalm. The things our bodies go through!

Also every month is different, it's like a pot luck of crap.

BUT acupuncture fixed loads of it for me, especially the sleep. Don't know if you do it but for me it was a god send. Good luck testing!

@HarrietM87 results come back tomorrow 😬 Your friend sounds ace and thank you, I am holding on to those words, they make me hopeful. I got the moon face too, such a treat!

@Eeviee are you okay? That sounds awful. You've been in my thoughts a lot lately after what you went through too. And now this. Sending you hugs and virtual soft cheeses.

Xxx

@Eeviee my levels of killer cell activity were very high when put in a pregnant state. Hence the hydroxy and pred from the get go.

@hrtbrk2 with the pred so far Ive got a really dry mouth, raging hunger and an upset tummy. I haven't had any side effects with the hydroxy..

@Eeviee hope you are feeling better.

Hey guys - thanks all for your hints, round 2 is a bust. BFN today and spotting already - on to the next, think I had so much riding on this month, not sure why. Onwards and upwards as they say :( x

@hrtbrk2 sorry to hear this, it's always such a downer but hopefully 3rd time lucky! A nice glass of wine is fully deserved later!

@Eeviee I missed your message about your hospital visit, are you ok? I hope the pain has subsided now! Are you having a post-op check up at any point?

@FrannyAnny82 hope you are ok

Hi to everyone else x

Sorry to hear that @hrtbrk2. Its so dissapointing get a negative test. Be gentle with yourself.

That sounds scary @Eeviee. I hope you're on the mend!

@FrannyAnny82 I hope you've had some news about the CVS. Waiting is horrid. I've been thinking of you a lot. Sending love. ❤

To anyone else on pause from the clinic ie not been prescribed meds, I've emailed the clinic today for an update as HFEA have said IVF clinics can open from the 11th May so hoped that may impact their decision. If I hear back, I'll post here.

Take care ladies. Sending all the and xx

Hi all

I messaged the Coventry clinic to see if they had a plan for reopening on light of fertility clinics getting the go ahead - nothing as yet and told they'll contact me if anything changes - got the feeling they're getting lots of messages.

I'm other news, I am 7dpo but might have shingles! I think I shared about a rash that I thought was eczema which mostly had died down but last week it suddenly flared up and by Friday I was quite unwell. Been prescribed antibiotics and an antibiotic cream. Just feeling like things are against us at the moment. Determined not to test early but can feel my resolve waivering. Can't help but feel that even if we have managed to conceive this month it's unlikely to progress due to the shingles :(

Sorry to hear your news @hrtbrk2

Hope you're OK @Eeviee

Sorry not to tag everyone, hope all is well :)

@FrannyAnny82 you deserve all the wine, all the hair dye and all the everything. I hope you’re not still waiting for your results.

@Eeviee you poor thing! Hope you are doing ok.

Oh I hear you @hrtbrk2. I convinced myself I saw a faint 2nd line appear when I POAS last week. My hands were shaking when I went back 3 mins later only to see a ghosty white space instead of a 2nd line. Gutting. Needed takeaway and wine after that! X

@hrtbrk2 so sorry to hear this. The gutting feeling of a bfn is so rubbish. Hope you can pick yourself up and onwards to the next cycle.

Hi ladies. I had my HSG this morning which went fine, the gynaecologist said everything looked great and there is no scarring from my MVA. I've got a telephone appointment this afternoon with the autoimmune specialist so we'll see what he has to say.

I asked whether it would be possible to to do the endometrial biopsy this cycle if the lab is open again in a couple of weeks and he said no because we shouldn't do it just after a miscarriage because we won't get good results from the biopsy.

So I thought we'd be waiting for an extra month before we can TTC again, but the doctor said he wanted to try Ovidrel this cycle and see if that does the trick. I'm tempted, I mean, God knows I'd love to get a BFP at the beginning of June and for it to work out this time. But I'm also worried that if I get pregnant and have another miscarriage (not on any meds) then we'll have to push the biopsy back for several more months.

What would you do?

@peperethecat why do you think you need the biopsy?

And would you be on the pred and cyclogest this month as well as the trigger? If yes, I think I’d go for that rather than waiting. I ovulate by myself but late in my cycle (day 21 usually, with an 11 day LP so a 32 day cycle). I suspected that the long cycles meant my eggs might not be as good for some reason (no basis for thinking this!) so for both my pregnancies I’ve done had ovulation induced and triggered with letrozole and ovidrel. It makes me ovulate on day 12 instead of day 20 so I also have more chances to try. It has worked well both times (cycle 1 for my son, cycle 3 for this one).

To me it sounds like you are fertile but potentially have autoimmune issues, which is why I’d prioritise trying over more investigations, but I’m not a doctor obviously!!

I would have the biopsy to check for NK cells, I think. I guess that's something to ask the auto-immune specialist about this afternoon.

I don't think I would be taking the pred because if I take it before the biopsy then it will interfere with the results. So I guess this cycle would be just the ovidrel and maybe progesterone if my doctors think I need it.

The doctor I saw this morning said that ovidrel helps support the corpus luteum to produce more progesterone and might also have a beneficial effect on the endometrium. He says he's seen a lot of patients have successful pregnancies after taking ovidrel.

But if my issue is NK cells and I get pregnant this cycle then there's a high risk of having another miscarriage and having to wait again for everything to return to normal before I can have the biopsy.

I also don't know what to say to my regular gynaecologist who doesn't know I've been to see someone else and will potentially be taking treatment prescribed by someone else.

She is local to me and is the only gynaecologist in my town with experience in recurrent miscarriage. He isn't local to me and it takes a long time to get to my appointments with him. If I get pregnant and need regular scans it won't be practical for me to keep going to him. But I'm not 100% happy with the treatment I've had from her. She hasn't been awful, I'm just...not sure.

In an ideal world I'd successfully get pregnant on his treatment and then go back to her for the ante-natal care, but I don't know if that will be possible.

It's interesting what you say about ovulating late. I usually ovulate between CD18 and CD22 like you, and I've wondered whether my eggs "go bad" during that time. Another question to ask the doctor. I'm having an ultrasound on Monday which will be CD11.

I guess its a personal decision @peperethecat. If it were me, I wouldn't want to risk another miscarriage so i would wait until you've had the biopsy. I've been waiting since January to try again and will be waiting a while longer TTC as they way I figured it is getting pregnant is not the issue - its making good embryos and keeping them.

Some good news re the clinic - they should be prescribing me the hydroxy (I've signed a waiver) but not the pred. So perhaps we can try in two cycles time! Hooray! X

If you wouldn’t be trying with pred this cycle then I agree, I think you should wait for the biopsy and rule some more things in/out so you can get a proper plan. I thought you’d already been prescribed pred but must have got mixed up!