Immune/NK issues - aka Pred Thread no. 23!

[Chickjen]

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

@WeeGi this is exactly how I feel! Not only are the losses devastating but I’ve also given up everything I used to love out of fear I’ll make my situation worse. And I’m so scared that the treatment won’t work and then I’ll be too old to try anything else. Hope everyone is doing okay this weekend. I’m trying to convince OH to let me get a dog Need something positive to focus on!

We got one too. She’s only 7 months and is in heat already 😮

@Wewin she is gorgeous 😍😍 this is the little girl I'm campaigning for...

Awww she is sooo tiny and so cute!! 😍😍@FrannyAnny82

Hello everyone.. anyone with Dr S on pred - were you asked to repeat the usual blood tests after two unsuccessful cycles on Pred? I was asked to repeat the tests today..

Hey @PGJV I’m not seeing DrS but my doc has me on a similar protocol and he indicated that he would like to repeat the NK test to see if pred has lowered the values (if not pg after a few cycles on treatment). Hopefully I won’t have to cross that bridge as it’s so costly! Will you be repeating the tests?

I was wondering if anyone on here has had the hidden infection test by serum ivf in Athens? I’ve heard a lot about it and considering having it done.
@PGJV sorry I’m unsure as I haven’t been on it long enough. He wants to repeat the NK cell tests or just the normal bloods?

Hey @zoe16 and @Eeviee it’s not the NK cells test it’s just the regular blood tests. I did get them done straight away after my appointment.. but just wanted to see if everybody is asked to do these as I wasn’t given any specific reason for this..
In other news still waiting for AF - 16dpo today.

Hi @PGJV no re bloods and I'm in month nine (or so) under Mr S

Hello everyone,

I am reporting back from my appointment with Dr S. It seems that I have normal levels of NKCs but the number I have has high activity. He put me in the complex plan (pred, progesterone for 10 days etc) and when I fell pregnant I have to do intrlipids.

I really hope it works. He seemed to think that this was the reason for my miscarriages and that I will be fine. Let’s see.. I know that it is not that straight forward. He did ask to see me again after 2 cycles.

I have 2 questions:

• do you take pred and the rest on 10dpo and test day 11 or you take pred and rest until 9dpo and then you test the 10th?

• any idea how much it costs for the intralipids?

I should have asked both this questions but I was not in a great form when I saw him. 🙄

Thank you!

@EmsIMO thank you for your reply. I just feel i didn't need these tests and I should have questioned him more about it but its done now so I guess I need to stop thinking and beating myself about it.

@MrsMargot you take pred and progesterone starting from the day of ovulation and continue to take it till 10 days and then do a pg test 10 dpo if you are pregnant continue to take it and make an appointment to see Dr S. if not stop taking it and do the same in the next cycle.
I am on the same plan as you with Dr S.

@PGJV I don’t know why he’d want to re run the tests unless maybe you showed elevated Thyroid antibodies or ANA and he wants to see if the medication has changed the levels? That’s the only reason I can imagine.

@MrsMargot, that sounds the same as me, not high numbers but they were borderline aggressive and my cytotoxicity was slightly raised.
I believe the intralipids are £350 each time, he has a price list on his website, you can dowload it. www.miscarriageclinic.co.uk/how-we-work-and-cost/

@Eeviee I can email them to ask the question but I am just not in the right frame of mind at the moment. Just feeling so teary and irritable. I've just been told that all my results came back normal though. I've asked for a copy of the test results for my record.

@MrsMargot I also forgot to say that ever if you have a question you can always call Dr S's clinic and ask to speak to a midwife or you could email them. The midwives / nurses are usually pretty good at answering any questions you might have.

@PGJV sorry to hear that you aren't feeling good. When I went for my results he gave me all my test results printed. Hopefully someone at the clinic can help explain to you why they want to rerun the tests. x

Thank you very much @PGJV and @Eeviee .Much appreciated! Good we can ask the nurses. My only (kind of) worry is that I started on 10 mg pred on the first 2 days and then I went to 25 mg as suggested. I started lower because it gives me some side effects. I will do 25mg every day next cycle. That would be fun. 🙄

Out of curiosity, do you all use Cyclogest pressaries? I told him that I have quite a bit of utrogestan (progesterone pills) at home and I much prefer them and he was very happy for me to use those. He actually said ‘all progesterone is progesterone’. My previous doctor was not keen on the pressaries. It was other the pills or injections. What is your experience on the pressaries? My stock won’t last forever so I want to see what I can do!

Hi ladies, can I join you? I'm new to mumsnet and I've been reading all the threads over the last couple of days. Its so nice to see the support everyone has for each other and how far back the thread has be running.

A little about me:
Mmc - Mar 2017, found at 12 WK scan measured 8weeks
Mmc - Sept 2017, twins, no HB on 6wks scan, confirmed on 8 week scan
Cp - May 2018
Mmc - Sept 2018. HB at 6week scan. No HB on 8week scan - stopped at 6+3
Cp - Jan 2019
Cp - April 2019

To add to my complications of TTC, I also have fibroids (largest about 4x3cm) in which I had 2 smaller ones removed in Dec 2018 via camera through the cervix. All other NHS fertility tests were normal. For the last 5 losses I was on aspirin from BFP. I bought the book by Alan Beer - Is your body baby friendly? and took it to one of my appointments and found that my NHS consultant was an advocate and had used a similar treatment plan to Dr S for other ladies with some success. She doesn't carry out the uNK cells test but is in that mindset that trying won't hurt and benefits out weigh the risks. I tentatively decided to start the plan (wished I had done so for my pregnancy last Sept) at the beginning of this year. 25mg prednisolone from ovulation, progesterone from BFP, 25ug vit d, 75mg aspirin, high dose omega 3, pregnacare, 5mg folic acid and heparin injections from positive scan at 6 weeks. Like some have mentioned I swear the prednisolone messed with my cycles when I used to be like clockwork! So after 2 CP at the start of the year and starting acupuncture in September I am now pregnant but I am absolutely petrified that this isn't going to work out again. I had a scan at 6weeks with a HB and felt a sense of relief for like 5mins then the worry set back in. They also found that my fibroids had grown back (another thing to worry about!). I'm now 7+5 with my 8 week scan due on Thurs. My pregnancy symptoms are so confusing! I feel nauseated and sick but then I want to stuff my face with food at the same time. I also keep getting light cramps and back pain and wondering if its to do with my fibroids? Does anyone have experience with fibriods? All I was told was "if you managed to fall pregnant the chances are you'll be fine". Although Dr Google (i know bad idea) can says otherwise!

Are there many on here that have gone past 12weeks? And what were your symptoms like? When did you start weaning off prednisolone (my consultant has said to keep taking until 13weeks then wean off - if I get that far!)?

So sorry for the long essay!

@williteverhappen welcome and I wish you all the best! This pregnancy will be sticky one! ❤️

I know nothing about fibroids I am afraid and I haven’t managed to pass the 12 weeks yet ( I am hoping next time) but I thought to send you some good vibes! 😘

@MrsMargot the pessaries are fine. I would very much recommend using them up the back as they cause a lot of mess in the front. This is something I only started doing with my IVF round, not my Dr S ones so you may want to check if he's happy with that, although I am pretty sure there is no difference in efficacy, just the whole process is a lot better when it's done that way. And don't worry too much about your pred doses. It builds up in your body pretty quickly and he'll be pleased you took something x

@williteverhappen welcome lovely and congratulations. Remember the mantra: 'today, I am pregnant'. Today I am pregnant too and it's actually my viability day today (24 weeks) after 4 miscarriages in 15 months. @Chickjen and @DaniMERL are pregnant as well and a number of others who actually may have now had their babies.

The first trimester is so terrifying. I do know exactly how you feel. I couldn't relax. Especially, like you, after having MMCs, when I knew I wouldn't even necessarily bleed. Regular scans helped so you only ever have a maximum time period to get through before seeing that heartbeat again (I, too, found out about my last loss at the scan when there was no HB). I had scans at 7, 9 and 10 weeks, although the last one was part of the Harmony test and 9 was given to me free after my clinic messed something up. I've read in a FB group that some people see how they go and then book a scan for the next day when their anxiety gets out of control.

Re the pred, I weaned off from 12 weeks and I guess was clear from 13-14 weeks. I know some people get anxious, I couldn't wait to be shot of the stuff! I was also on clexane, progesterone and oestrogen and it all stopped at or before 12 weeks.

Best of luck to you, keep repeating that mantra. Message me if there's anything specific you'd like to ask. Take care x

Thank you guys so much for your kind words, it really means a lot! @KittyKatSmile I love the mantra, I will definitely be using it to help me get through each day. Congratulations to those currently pregnant, I wish us all the best of luck. Also to those currently TTC we hope it all will be worth it in the end and we will get out lovely rainbows 😘 x

@MrsMargot I also use cyclogest pessaries but up the front as I had problems with my back passage (TMI!). The front is messier so I use pantyliners but would prefer to use the back if I didn't have said problems!x

@KittyKatSmile congratulations on reaching your viability day! Its nice to see that your situation is similar to mine and you are progressing well, thank you for the advice. As you may tell from the time I'm awake at silly o'clock (the joys of pred!). Gonna try and get back to sleep now x

@PGJV I had to repeat bloods after 1 month but Dr S suggested I do this at my GP and send him the results. I’d had a high reading in respect of my liver function test though so he wanted to check it had sorted itself out as otherwise he wouldn’t recommend the Intralipids. I also had more blood tests done a couple of weeks ago after I’d been on the hydroxy for 3 months ‘just to check everything is still okay.’ So I think he sometimes runs them as a precaution, albeit an expensive one at £70 per test!

@MrsMargot I start the Pred on my first temp rise after ovulation so 1dpo (I use ovusense so I know when this and then take it for 10days, test on day 11. When I asked Dr S about this before he said to start it around ovulation and that it didn’t have to be exact so try not to worry ☺️
I also use the Cyclogest pessaries (up the front) and find them okay. Sleep with a liner on and expect a bit of a mess in the morning but other than that they’re okay.