Immune/NK issues - aka Pred Thread no. 21!

[Tee4me]

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

Thanks for your reassuring message Harriet. I’ll wait to hear back from Dr S / his team and see what he says, and I was thinking of looking to get them elsewhere is possible. If not, will just have to pray it works without them. xx

Great news that the line is darker! You’re fully pregnant! I echo Harriet in that I totally understand you wanting to do everything you can.
I don’t know much about this option but you could ask at the hospital about the possibility of paying a private nurse to administer this. You just need your blood pressure monitored every so often and a saline drip after to flush it through.
I’m not sure how far you will get with this or whether it’s the same stuff/recommended etc- but may be worth investigating if you’re feeling really concerned xx

www.chemistdirect.co.uk/intralipid-20-100ml/prd-kee#

Another thought adrya regarding intralipids- healthcare at home used to be the company Shehata used. They come to your home to do it for you. Much easier. But he then decided they didn’t administer them how he wanted and started offering them at the clinic. Worth contacting them...

@ Seekingmiracle and @JustLa thanks both. I spoke to a couple of private fertility clinics and they are reluctant to administer if you’re not under their care. I have decided to stop stressing about them and and just carry on with what I have. I got a very nice positive line today (15dpo) which has cheered me up a bit!
Really appreciate all your advice and help lovely ladies! xx

Hi all - apologies for dropping off the thread and huge congrats to the new BFPs and successful scans since I last wrote!

Brief update from me: after 10 days' norethisterone, which ended last Monday, AF came on Thursday. Whilst a tiny bit lighter than usual, it is a definite bleed so I'm counting it as the start of the new cycle after mc and time to try again. Fingers crossed I actually ovulate - cycles were wonky for months after my last D&C.

Does anyone have any encouraging / motivating thoughts for 'getting back on the bike' to ttc again? Despite the CBT, which has been somewhat helpful, I'm just full of fear about it all going wrong, time and time again.

Harder still is the fact that DH isn't at all scared - I'm not saying it would feel better if he was suffering too. He's a GP and sees our overall success rate with pregnancies as an indicator that it's likely to work again at some point if we just keep going. My head partially agrees with him, but my heart just hurts and hates the fact that recurrent losses happen to anyone, including me

Hi @Schnitzel (oooohhh, schnitzel is one of my favourite foods, I can cook a mean one!) - I’m quite new to this thread, and forgive me but I cannot seem to find your story, but it sounds like you’ve experienced a few losses, so sorry to hear that...I have had 4 losses myself in the space of 18 months, 1 MC at 7 weeks and 3 CP at around 5 weeks, so I can understand how heartbreaking it really is, and how much you sometimes want to give up. I was very close to just giving up, as whilst we do want a baby, hubby and I have very happy lives as we are, so had to pull myself quite hardd together and try again on Dr S’s protocol. So all I can say is just do whatever you and your husband feel is right for you, as that’s what’s the most important. Sorry not trying to give advice, just sharing my experience and thoughts. Whatever you decide, I hope it works out for you.
PS. We have fallen pregnant on first try on Dr S’s treatment and now I am completely paranoid something will go wrong, I am the worst I have been with any of the previous pregnancies! Really don’t know whether I can start this over again if it goes wrong this time...
xxx

Hi ladies
Sorry,couldnt catch up.wow lots happened.my big congrats to hopeflower and adrya.early days are nervous , worrying.for me ladies here were very supportive.so dont worry keep posted.
Thanks poppy for asking.iam in 11 week.i had scan everything ok.Drs told i do have 98 percent positive chance for pregnancy.now anxious waiting for harmony test results.my morning sickness kick started for me afternoon and night sickness.little back pain,cope with accupunture.still worrying and fingers crossed.how its going for u.i hope u started ttc,u will be next one for BFP.
Luna how was your early scan?hope ur cramping bleeding settled.
Justla happy for 20 week.little belly pop on.
Harritem i guess u are enjoying second trimester.
Schintzel i took 2 cycles for me to get everything normal i mean ovulation.stay there dont worry.its shouldnt happen to anyone most painful thing .hope u get well soon.ur hubby gp can help out.
Seeking hope its going good for u.

Tee4me dont worry.i can understand your frustation after spending thousands.i have been through ,i had bfp after seven long months.next month will be yours and get bfp.

Hi ladies, heard back on Intralipids and you were right, not offered on the NHS, and would have to see Dr S privately to have them added...so have resigned to the fact that I’ve missed the boat this time, and should anything happen with this pregnancy, I will consider going private. Have decided it’s pointless to worry about it now!
Have been testing like mad, and I have been getting stronger and stronger lines, got a Clearblue digital showing 2-3 weeks on day period was due, so hoping that’s a good sign it’s progressing...waiting for my first scan date, a bit nerve racking! And also good that cramping and back pain has subsided quite a bit, so being cautiously optimistic at the moment!
How’s everybody getting on with testing, scans, etc, would love to hear updates!
Thanks all xx

Hi Adrya,

I am counting down till my early scan next week and not trying to get my hopes up. Can't imagine seeing a good scan! I have stepped away from doing pregnancy tests as I used to get rather obsessed with the CB digital ones. Don't feel too bad physically, apart from needing the loo all the time. I am hoping that's the steroids masking the usual pregnancy symptoms.

How are you? When are you having a scan? Xx

Hi Hope,

I’m sure the scan will go fine - how far along are you now?
Still waiting to have my scan booked, have been playing telephone tennis with the Early Pregnancy Unit (the joys of being under NHS care!). I’m actually feeling quite ok, sore boobs and some waking up during the night (I normally sleep like a log). Also needing more loo breaks but I suspect they are linked to drinking lots more water...must say steroids side effects not too bad, but still early on I guess...
I know what you mean about the Clearblue digita tests, and all the other brands, we could have gone on a weekend break with the money I spent on them, ha-ha!
Praying it all goes well for us both, it is the most stressful time I’ve ever experienced, much worse than any other pregnancies! Keep up posted on how your scan goes xxx

Bala I'm so pleased to hear you're pregnancy is progressing well and you've had such reassuring feedback! You and your husband must be getting ready to announce soon?xx

Congrats bala! Wow 11 weeks has flown! Yes thank you, cautiously starting to enjoy the second trimester - 16 weeks now - can hardly believe it.

And adrya it sounds like you've got a great attitude. I would say step away from the tests but I was exactly the same! I did stop after I got the 3+ on cv digital though (after I'd done about 10 frers...). Let us know when your scan is - hope you can get booked in soon.

I had a positive test 2 weeks last Monday. Not really sure how far along I am. I am finding the steroids have affected my mood and making me more 'glass half empty' person at moment. I have come out with a horrid rash all over me. The gp thought it was a reaction to the steroids, I emailed Nadia and she has asked Mr S and he doesn't think it is a reaction to them! Now rather worried about it. Also, does (sorry it tmi!) have more discharge after taking the cyologest pessaries? Seem to have more than normal and I have had it with v small amounts of brown/pink..trying not to panic about that either! 😱 Feel like big ball of worry xx

Hi Hope,
I’m not going to say try and relax, as I know it’s impossible at this stage - just try to take it a day at a time...
So sorry to hear the steroids are affecting you like that, did the GP suggest it might be anything else? Also, re: the discharge linked to Cyclogest, I’m not sure how much is actual discharge and how much is the pessary residue- but if you want peace of mind about the brown/pink you’re seeing, you should pop into A&E, although it might be just old blood?
Keep us posted, and feel free to PM me if you wanted a chat xxx

Hi Hope, sending you good vibes.
Harriet, congrats on getting to 16 weeks. Will you stay on pred throughout your pregnancy or start to taper off?

Hope -sorry you’re having a worry. The extra discharge could just be the cyclogest but increased discharge is also a very normal response to pregnancy. It’s your body’s way of keeping everything clean in there. The pink/brown could just be from irritation from the cyclogest so I’d suggest trying it up your bum. It’s far less messy and no irritation to your cervix.
If your worried see your GP, don’t go to a&e. He/she will refer you to your local early pregnancy unit if anything untoward is suspected. A&E is for emergencies and as much as I know how scary it is, they will not be able to do anything to stop a miscarriage from happening. Your gp is your best bet at this point. Be reassured that loads of us have had varying degrees of bleeding in successful pregnancies.
Can’t offer any advice regarding the rash I’m afraid. But if that gets worse, make sure you get another opinion from your doctor. It could just be that the pred has lowered your immune system and you’ve picked a big up.
Try not to panic Hun, I’m sure all is good. When is your first scan? X

hope I don't have anything to add to seeking's message - totally agree with everything she's said.

ferntwist thanks! I started tapering off the pred at 12 weeks and took my last dose a couple of weeks ago. Stopping the progesterone this week so will be drug free! (Apart from thyroxine and vitamins...)

Harriet thank you. Great news that you've tapered off now and all is going well. Exciting times.
I'm 4 weeks and 3 days now. Can't wait for the weeks to pass! Start my pred after our first scan, hopefully in less than 2 weeks.

Thanks everyone for your lovely messages.
Will try the pessary in my bum tonight! Rash not so bad today and on countdown to the scan next Thursday. Fingers crossed to us all. Never appreciated how stressful this could be. Lovely to find a group of girls that our going through the same thing xxx

Hi Hope, how are you feeling, hope better? I have been having right side cramps for the past couple of days, quite sharp at times, called EPU yesterday for advice and they asked me to go for a scan today, totally freaked out! ☹️

Hi Adrya,

I hope the scan goes well. Sure it will, these early days bring so many changes to our bodies and it doesn't help with our worry. Hopefully the scan will put your mind at ease xx

Thanks Hope, keeping everything crossed...how are you feeling, rash and pink/brown discharge any better? x

I am ok, thanks. At the moment the rash is better and so is discharge. How did the scan go? Hope all ok xx

So pleased you’re feeling better Hope! Scan went well, they ruled out ectopic, which is why they booked me in for the scan, they could see a clear sac (too early for anything else as I’m only about 4 1/2 weeks), going back for another scan in 2 weeks - they will be the longest 2 weeks ever! Hope your scan goes well next week, what day is it? xx