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

@Countrygirl220 that’s great news at your scan. I hope the next 3 weeks goes quickly although time does seem to go quite slowly in lockdown doesn’t it. Such fantastic news x

@HarrietM87 how many weeks are you now? I completely understand how you feel & I’m the same - knowing I should be so happy but also convinced that baby’s heart will stop at any point & I won’t find out until a scan. My husband is more medically minded than me & just says to look at the fact I’ve had x number of good scans, no ones flagged any concerns & you’ve done this before (which you have) and just to try to be rational about it. It’s so hard though & my rational part of me disappeared a while ago!

@KtAgs that’s great news about the hydroxy. I haven’t found it had any side effects and I’ve been on it since September last year & I’ve just come off it on Sunday. I had my eyes tested at the beginning but apart from that all fine although I was only on 200mg. They are doing a massive study on it aren’t they so I do wonder what that will show.

@peperethecat if it’s any help I had loads of tests and there was nothing wrong with me & I was considering ivf but in the end tried steroids from ovulation & hydroxy & it seems to have worked. My husband also had sperm fragmentation test too & his sperm was so good he could donate it! I found it hard with nothing coming up on the tests but 4 mcs x sounds like you are getting lots of support though from the doctors

@Eeviee that’s hard getting that result back. I just hope Mr S is helpful on Monday & you can get trying again asap xx

@Jorun good luck for your appt on mo day x

Hi to everyone else! Not much news from me save to say I had my 16 week scan with the professor at Mr S’s yesetday & it looks like the leaky heart valve has fixed itself so feeling really relieved! X

@Eeviee thank you, hope so. I think sometimes it helps just getting a pep talk from somebody else. My other doctor did that as well, he was like you haven't come this far and gone through so much to give up now. So I hope Dr S gives you that on Monday, let us know how you get on! Ok that blows my theory totally out of the window then, is it a telephone apt on Monday or are you having a scan? As a scan would tell you whereabouts you are in the cycle or certainly whether you've ovulated since the op. Have you taken your temperature as that might also give you a clue esp if you've had a negative test? Yes, I conceived literally the next go (which has never happened). I didn't have a normal period (which I know is not typically the advice) but it was such an early miscarriage that it was a bit more akin to a period so we were a bit like why not.

@mezgaski congratulations to you, that must be such a relief and brilliant to get to 16wks! And thank you, I'm literally counting the minutes at the moment. We are building a kind of BBQ/outside kitchen thing this weekend, so I'm hoping that will take my mind off it a bit.

Hi to everyone else, hope you all ok and manage to enjoy some sunshine x

Hi,

I’ve been lurking on this thread for a few months. I had one successful pregnancy on pred back in 2017 (worked first time). My Ds is now 2 and I got referred back to Dr S, started the pred but had a mc at 6 weeks in January. They said they were going to put me on hydroxy but then covid happened and I was told they’ll get in touch when it’s over. Does anyone have any idea when we’ll allowed to start treatment again? It seems Dr S’ private patients are being given different rules to his NHS patients.

Hi @tiggykate. I'm a private patient of Dr S' and have just been put on hydroxy (two days ago) after a month of being told I couldn't have it. I saw the IVF clinics were saying that treatment could start from next week so I msgd the clinic on the chance they would prescribe and they did but only after I signed a waiver. No pred though

Thanks for the kind messages @mezgaski and @KtAgs.

@peperethecat that chat with the gynaecologist sounds interesting - personally I prefer straight talking for this kind of thing. Are you going to go with ovidrel and progesterone then? And are you taking letrozole as well?

@Eeviee I hadn’t seen your update about the testing - it’s good you found out and know there’s nothing that you could have done. I can totally understand the fear re egg quality but as far as I know these things are totally random and could have happened at any age. When you’ve lost chromosomally normal ones before presumably you weren’t on any other treatment?

@mezgaski I keep getting moved ahead in scans so 14 weeks now and fully weaned off the pred. Had awful withdrawal going from 15-10, some from 10-5 but then I’ve been ok. We’ve started telling people and I can’t bear to hear their congratulations as still convinced it won’t work out for some reason. Hope I can get over it soon.

@HarrietM87 No, no one has mentioned letrozole to me. What is it for?

Hi ladies,

I went for my follicle tracking appt on Monday and for once it was good news! I finally had some decent sized follicles and all I good hear was Dr S shouting 'Wow' everytime he found one! My last 4 appts have been disappointing and although I know it doesn't mean I'm getting a bfp this month I feel like I'm closer to one 🤞🏽 He said the change in follicles from my last scan was amazing and in fact maybe I had over stimulated a little.
I'm on the pred now but the reduced dose and self isolating. Does that mean no walks either?
I've been soaking up the sunshine in my garden and although a bfp would be amazing, I'm just happy I've responded to the meds.
I hope everyone else is doing ok.

@Eeviee sorry that you've been through so much in this last week or so, I hope you've been extra ind to yourself.

@HarrietM87 did you say your current pregnancy is a result of super ovulation? I'm on round 5 and just hope it works soon for me xx

That’s brilliant news @HoldingOn2Hope!! I am on my 2nd round of superovulation and really hoping for a better scan this time around. Would be really interested to know if you did anything different this time around that you think might have contributed to the change? Wishing you the very best of luck. X

P.S. I think it’s fine for us to still do the walks @HoldingOn2Hope. I told Dr S that’s the only thing my husband & I have been doing & he seemed happy enough with that. X

Can someone tell me what superovulation is?

Hey @peperethecat it’s where you are induced to ideally release more than one egg in a month to improve your chances of conception. Dr S prescribes letrozole which you take from either day 2 or 3 of your cycle for 5 days. Then he scans you to track the development of your follicles and advises you on a day to do the ovidrel trigger and tells you when to have sex & when to start the pred, cyclogest etc from.

Does it increase your chances of a multiple pregnancy? And does he prescribe it to all his patients or just some?

I don't have any problems ovulating but this new gynaecologist wants to give Ovidrel a try anyway.

@peperethecat the letrozole stimulates your ovaries to produce more follicles so you have more chances. Mr S won’t trigger if you have more than 3 or 4. I had 1 follicle the first time I did it (resulted in my son!) and 4 good follicles this time and still only one in there!

@HoldingOn2Hope yes I’ve had 2 pregnancies from SO - worked first time with my son and 3rd cycle this time (though was on wrong dose for 1st 2 cycles - I needed to go up to 7.5mg this time). Fingers crossed for you!

Yes it does increase your chances of a multiple pregnancy. Although at this stage I think I’d be pretty happy with that!!

In my case Dr S just gave me the information on it at my initial appointment and I chose to go ahead with it after 2 rounds of taking pred from ovulation. I imagine that he gives it to everyone as an option. I don’t have any problems ovulating by myself but decided to go ahead as I’m getting impatient (my last miscarriage was Jan) & I’m hoping that this will improve my chances.

PS @peperethecat I ovulate by myself too and have never had any issues conceiving. But my DH is away a lot and I liked the certainty of getting the timing exactly right plus I felt like producing the eggs earlier in my cycle (which is what the letrozole does) made them “better”. If you’re just on ovidrel I guess you’d trigger around the time you’d ovulate naturally?

The multiple pregnancy chances go from 2% in general population to 7% I think on letrozole, so it’s still rare. Much less likely on letrozole than clomid.

That's interesting, thanks @Crystal2020 and @HarrietM87.

I'm on CD8 so I'm guessing it would be too late to try letrozole this cycle but I might mention it to my gynaecologist on Monday and see what he says. I'd like to ovulate a bit earlier in my cycle.

Definitely worth asking your gynae about it @peperethecat. Like @HarrietM87 said, I feel like it’s speeding everything up & making me feel less impatient. I ovulated on day 11 with letrozole as opposed to day 16 the month before. And it’s great knowing exactly when you ovulate!

@Crystal2020 thank you! I was dreading going to the clinic almost didn't go, one because it was the first time I'd been out since staying home and secondly because every appt has been disappointing. I was on letrezole for the first 3 cycles but it just wasn't working even when I was prescribed 10mg. Then Dr S introduced gonal-f and I didn't have a great response to that either. The 2nd cycle of g-f his colleague scanned me and said it was not a bad response however Dr S told me on Monday it was completely useless and not what he expected. So when he scanned me he was just amazed - I was put on a much higher dose and had 4 really good follicles and a 5th almost ready too. He did give me option to abandon cycle as risk of multiple pregnancies but then when I said I didn't want to he replied 'of course you wouldn't as you've come a long way to get to this point' - it was almost as he couldn't advise and had to give me that info but wanted me to carry on as he had the trigger shot ready!
I didn't do anything different this time I was on a higher dose so I guess that worked and if I'm honest staying home has allowed me to rest. I'm always on the go, always busy and have a demanding job so my husband is convinced it's because I've had time to rest, I've been cooking loads and eating well, I've also not had any red meat at all which is just something I read a few months ago. I usually have a cry on my journey home and almost did this time but happy tears. I hope you have a good response, when is your tracking scan?

@peperethecat @HarrietM87 I ovulate on my own too and in fact when I had the blood tests to show this the numbers were super high but maybe I just don't have big enough follicles? I don't know.

@HarrietM87 I had 4 dominant follicles and the 5th was almost ready too so the choices Dr S gave me were

1. to abandon cycle 2)take trigger on that day to stop 5th follicle developing any further
2. no trigger and carry on with cycle

I went for option 2.
The nurse cane and said to me while I was waiting for meds that I'd definitely made the right decision and because of covid Dr S isn't able to advise as he would normally, I guess he had to cover himself.

Oh my god @HoldingOn2Hope I’m so pleased for you! I would have had happy tears too. How nice to get some good news for a change. Like you, my job can be pretty stressful and it had actually got to a ridiculous point pre-lockdown. My husband was going crazy about it. Things have calmed down now and I’ve had time to cook and do lots of exercise and meditation so I’m really really hoping it helps me too. Regardless, I’m enjoying feeling good and I’m going to try and keep a lid on the stress. My scan is Monday so fingers crossed! X

@Crystal2020 Sounds just like my life! The lockdown was making me very anxious, I think weeks 2 & 3 were the worst but now I just feel I'm in a routine. I have a good nights sleep since lockdown, 8-9 hours a night whereas before I'd be lucky if I got 5! I don't generally eat a lot of takeaway and haven't had any for 6 weeks and generally just eating a lot more fruit and veg particularly because I was trying to keep my immune system healthy as petrified of the virus!
I hope your scan goes well on Monday. What meds are you on? Xx

@KtAgs that sounds promising about the hydroxy. Hopefully they’ll be ready to prescribe it to me soon. Putting everything on hold is starting to affect my mental health. I’m not getting any younger.

Thank you @HoldingOn2Hope! Not long to wait now. I’m on the letrozole and then the omeprazole/pred/Cyclogest combo from ovulation. Really finding it a rollercoaster being on & off the pred. I don’t seem to sleep at all for the first few nights after I start re-taking it which hasn’t exactly been doing wonders for my mood!

Hope everyone is doing ok today & managing to enjoy some of the sunshine.

Hi all - I hope you're having nice bank holiday weekends or as good as possible under the circumstance.

@pepperthecat - one thing my acunpuncturist mentioned to me when I ovulated later a few time's (day 23) and had the same worry as you was that rather than thinking of the eggs going bad, think of it as a bit longer for your endometrium to build up a nice thick lining for implantation so can be a good thing?

@Countrygirl220 great news about your scan!!!!

@eeviee sorry to hear about your results - it's such a tough one to get your head around with trying to decide whether your relieved or not that they are healthy or not. Another thing to have to battle with mentally!

@ktAgs - I hear you with the 'rabbit hole' im the same - those scientific papers I read and think I've come out with a new understanding and then something else comes along to contradict it and you think 'here we go again, none the wiser' - also I read the guardian article, a long and thought provoking read that offered some hope that what ever treatment we may or may not be having - we may just get lucky with one!

@jorun good news that you are seeing Dr.S the only thing I would say is be prepared to feel a little bit 'rushed' -he is very forthright, quick and 'scientific' and on my first appointment I remember bursting in to tears in reception having felt like I'd just been kicked off the end of a conveyor belt. This is not personal - he clearly knows what he's doing and I'm sure based on the other ladies experiences he's great later down the line but he can be very matter of fact and there is an assumption that you will just pay all the money for the tests, and so take the time after to digest what he has said - it's a lot to take in in a short space of time!