Immune/ NK cells - Pred threat 27

[LaurenAB94]

@Bambii @Daffodil21 @Eeviee @Everhopeful35 @farfromperfect82 @Eeviee @Everhopeful35 @Hazlet2 @farfromperfect82 @HoldingOn2Hope @Jellystar23 @KtAgs @Lalaifa @LookingforAnswers86 @Marabouchoc @LRL12 @MrsMargot @Naticle @NessyT91 @NessyT91 @NICK7nick7 @rainwillmaketheflowersgrow @Rebecca9876 @Sophfr17 @Tinpo @VenusStarr @Wheresmyrainbow @Whyisthistakingsolong

Thanks @Daffodil21 I feel huge right now! I'm testing on Friday 🤞

Hi again everyone

So nice to read some success stories on here!

Did anyone have the uterine biopsy to test the NK cells? My current gynae has offered to do this for me and agrees I probably need to be on steroids when I get pregnant again. He’s also going to prescribe letrozole. He said he doesn’t mind me getting the test elsewhere as long as it’s the biopsy and not the blood test!

I’m confused as I’ve provisionally booked to see Mr S in April. If I go with my gynae I can get started sooner (and at 42 I’m worried about running out of time!) It also would be simpler in terms of staying under the care of the same consultant throughout.

On the other hand I know Mr S has helped lo of women.

Any advice or thoughts?

Thanks!

Hi @Badlydrawngirly I had the nk cells biopsy first after my 3rd loss but it showed a normal level of nk cells, so I wasn't offered treatment other than cyclogest. I then had my 4th loss and the doctor who ran the test (Coventry implantation clinic) said that it's possible I needed steroids, even though the test was normal, but it was at the height of covid, so he wouldn't prescribe it. So we went to Dr S and my peripheral nk bloods are a normal count but they are very active in pregnancy. So I'm on the complex plan now with hydroxy, intralipids and predisolone.

The doctor you're seeing might be different, but the implantation clinic wanted 2 biopsies, so at least 2 cycles off ttc and the results took up to 8 weeks. Would he just prescribe the steroids without the biopsy? X

Hi @VenusStarr

Thanks for replying. That’s really interesting.

He didn’t mention 2 biopsies and he knows I’m keen to get going. I have this strong feeling I need steroids as every time I’ve conceived it’s been after a course of steroids for my auto immune condition. I’m also back on hydroxychloriquine now and I think that’s what helped me fall pregnant in December.

There’s another Dr who will prescribe without all the tests, Amanda Tozer in London. She’s been recommended to me too.

It’s so hard to know what to do. I’m pretty sure my NK cells are going to be high because of my autoimmune condition but I guess you can’t ever be sure.

There seems to be a big debate amongst the Drs about the right way to test for NK cells and we’re just stuck in the middle!

This is all so frustrating!

Is Amanda Tozer prescribing steroids now @Badlydrawngirly? I know she wasn't but hopefully that has changed. It is possible with your other autoimmune condition - my ana bloods showed a positive but I don't have an autoimmune condition diagnosis (I think my rosacea is related, but Dr S isn't too concerned).

It's really frustrating for you. I thought my nk cells would be high, I guess until you have the tests you don't know. But everything takes time!

I just asked dh to look at my face to see if I had puffy cheeks / moonface and he said yes 😩😩 knew I wasn't imagining it!

@VenusStarr

I really feel for you! I’m not looking forward to the moon face and the insomnia!

I’m not sure how long ago she prescribed them to the lady who recommended her to me so maybe she’s not.

I’ve had a medium high positive ANA for about 10 years and also other symptoms of lupus. I tested positive for APS years ago but now they’re negative and I have a different kind of thrombophilia so I’m a bit of an odd one!

@VenusStarr best of luck to you on Friday!!!

My husband lied to me! He said he couldn't soo a difference when clearly there was one!! You might be lucky with the insomnia - I was. I even managed to get back to sleep quickly after getting up for the loo several times. Sometimes I found it harder to go back to sleep the closer it was to morning, but that's probably because I knew I had to get up soon!

@Badlydrawngirly I got prednisolone via a video app from a clinic in Manchester - do you want me to send you the details? I wasn't tested for anything so I don't even know if I need them, but something has been helping so far this time!

Well another perspective for the moon-facers... I’ve been on pred nearly 4 weeks now and have no moon face so I’m really panicked that it’s not working properly. I never thought I’d be wishing to plump up so much! Dr S also said it would mask pregnancy symptoms like nausea and fatigue, but it definitely hasn’t done that.

I am covered in horrible spots on my face and neck though so maybe that’s my pred side effect.

@Tinpo I don't think moonface happens for everyone. Actually on the side effect list in my leaflet I think it lists moonface as one you should speak to your doc about if you have it (I didn't because I know it does happen). I also had loads of spots on my face and all down my neck. Theyre finally going down now, so don't worry it's not forever!

Sorry you're having to deal with nausea, must be horrible!

My appetite has finally gone back to normal, actually probably less than it was before. I can't believe how much I could eat on the pred! It almost became a chore to eat 😂 so don't worry if you're experiencing that too, again it's not forever!

That’s good to know @Daffodil21! And glad the spots will go eventually too. My appetite is weird - it’s like I just want to graze all day but I don’t know if it’s real hunger or just a way to keep the sickness at bay. And after all my goals to be super healthy if I ever got pregnant again, my two main food sources are now toast and pick n mix jellies.

@Tinpo haribo has been my weakness! If you're feeling sick just eat what you fancy and what you can. I was eating ridiculous amounts but I'm glad that's not the case now. I wasn't feeling sick though thankfully

@Daffodil21

That would be great, thank you! I’m so pleased it worked for you.

I wish they would just try them on all women with multiple losses as so many can’t afford the tests. Pandemic aside, they’re a fairly safe short term treatment.

@Badlydrawngirly I've sent you a PM. I know, it's not exactly fun to be on but worth a go! I wish GPs would be more willing to prescribe progesterone too

One of the lucky ones with moonface 😂 interesting about the spots on the neck too... I have a patch either side of my neck, close to my hair line, been quite itchy today. I've been waking up at 5am sweating too (dh is so lucky right now!) and then not getting back to sleep... I had worried that it would affect my sleep more.

Hope you're doing OK @Tinpo

Hope you get sorted @Badlydrawngirly, I think the advantage of seeing Dr S is he'd be looking at your full history and the suitable meds, but sounds like you have a good idea about what you need, so hopefully @Daffodil21 's clinic can help you 💕

Thanks @VenusStarr - I’m an early riser now too. Keep waking up at about 5am (4:30 today!) too and then by 9am I’m ready to go back to bed. Luckily shielding means I can usually squeeze in a nap. Hope you’re doing ok!

I've woken up with the worst symptoms of a uti today and I've had some pink spotting when I wee (tmi, sorry) . Waiting for the GP to call me back as they won't test a sample until I've had an appointment. Feel generally a bit unwell today x

@VenusStarr I don't know why but I always feel weird about posting the clinic name on here?! But anyway it's called Nova Fertility based in Manchester but they do video appointments too. Happy to share any info with anyone who wants it. The appointments are £150 + the meds.

Sorry to hear you're feeling so awful today. Hope you feel better soon!

Oh no @VenusStarr, sounds rough! I had one a few years ago and found that drinking water with a small bit of baking soda helped take the edge off. Definitely worth seeing your GP too but in the meantime it might help with the pain. Get well soon!

Thank you @Daffodil21 and @NessyT91 I am definitely peeing blood 😢 my GP is treating it with antibiotics that are safe in early pregnancy - he wants to err on the safe side even though I haven't tested. I'll take a sample in as he wants to check my sugars, but the lab aren't operating as normal, so can't confirm it's definitely a uti, but he said it sounded like it. Joy. Do you think it's the steroids?

I've heard of Nova @Daffodil21 I'm glad they were able to help you ☺️

@VenusStarr I know the steroids can make you pee more - they certainly did with me. But not sure about the blood?!

Oh no @VenusStarr - hope you’re ok. Not what you need right now is it! Glad your gp is able to give you something for it.

Thanks @Daffodil21 and @VenusStarr!

You’re right, I’m still tempted to go to Mr S for a thorough review but I’m wondering if I need to spend over 2k to get the same treatment?

I hope the antibiotics help quickly with the uti Venus - I had one recently and it made me feel so rough.

The clinic have come back to me and just said they hope I feel better soon,, no need to stop or change anything. Tomorrow is my last day of steroids, unless I am pregnant. Hope its not a regular occurrence!

Just having a lie down, I don't think I've ever had a proper uti before.

Thank you all @Daffodil21 @Tinpo @Badlydrawngirly.

I know what you mean about paying out for tests with Dr S. If it's just the treatment and it works then it feels unnecessary, but (not to be negative, but as I'm struggling to conceive I guess that's where I'm coming from) if that doesn't work or you do struggle to conceive, would you then want to see Dr S for his opinion / support? As it might be better to already be in his system? What does your partner think? Xx

@daffodil21 congrats on the boy! I can't wait to find out. I've also put on over half a stone. None of my trousers fit at all, but I'm not complaining.
I've been feeling very sick and it hasn't entirely gone away at 13 wks, but again it's not something to complain too much about after everything we've been through. I also still can't stomach veg and only want plain beige food 🥴

I have lots of nosey friends asking how fertility treatment is going, but don't want to tell them yet.

I hope you feel better @VenusStarr and good luck for testing tomo. X

@Whyisthistakingsolong you're doing better than me! Almost a stone by my 8 week booking app and nearly 2 stone now at 18 weeks tomorrow. As you say, we can't complain. It is a small price to pay, but don't worry you are not alone!