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Immune/NK cells - pred thread 29

1000 replies

StillTrying10000 · 19/02/2022 20:14

Starting a new thread as the last was full.

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6
Amy00 · 11/08/2022 14:15

Hi everyone
Thank you for your messages of support yesterday, it means a lot just knowing I'm not alone in this awful experience.

Update - I've been completely thrown by the scan at EPU this morning as they saw the same thing as yesterday, a tiny 4.1mm baby that they measured even smaller than yesterday (was 5.5mm yesterday) but they said the heartbeat looked strong and everything "looked perfect" but there is a discrepancy with the dates. I should be 7+1 and it measures 6 weeks. They were just really positive about it all and turned the screen round with a flourish to show us the heartbeat, and didn't seem concerned by the size. I'm to go back again next Thursday for a rescan.

I'm feeling in a bit of a state as I spent yesterday grieving the loss and mentally moving forward, thinking about booking a holiday etc, but the EPU have now instilled some hope in me that I really suspect is false.

Our last loss was the same thing, we saw a heartbeat at 7 weeks but it was measuring 6 weeks, there was still a heartbeat at 8 weeks but measuring 6+5, then 9 week scan finally showed it had stopped at 7 weeks. EPU were consistently optimistic that time as well.

Feels like I'm just waiting for the miscarriage to be confirmed so we can move on with our lives but there is a tiny sickening little pea of hope lurking as well now which I wish I could just squash as I don't want to have to keep hoping and grieving at the same time.

Tgrf55 · 11/08/2022 14:19

@Sophi81 @Ralowi the Q10 improves egg quality so i personally wouldn't stop taking it! It is expensive from H&B I'm not sure how much the clinic charge for it but might be worth asking.

Amy00 · 11/08/2022 14:44

@VenusStarr it's so hard to have losses under the protocol. It's like where else can we turn to? Do we start to consider adoption? Is surrogacy an option? I don't want to do either of these things but I don't know how to contemplate life without children.

Our plan once this current situation is resolved is to get PGT testing done on any more embryos before transfer, we didn't do it on this one as we only had 2 and I had read bad things about it identifying mosaic embryos as abnormal when actually they may be viable but legally you can't use them in the UK once labelled abnormal. But obviously now regretting not doing the testing as maybe it could have avoided another miscarriage. What are your thoughts on PGT testing?

I also plan on purchasing some doxycycline as this is what they do on Prof Quenby's trial.

I've not been on aspirin as I had an off putting bleed from my bum (!) last time I was on it right at the start of treatment last year but that could also have been the Humira (which I will now be due again as it will be a year in September).

So a few things to do differently even before a potential protocol change which I feel positive about.

@Sophi81 that's so nice to hear you had a positive outcome! Dr S can be quite blunt at times can't he 😂 I have emailed the CRP clinic with my scan reports just to see what they say. I expect them to be negative/realistic. Sorry this cycle hasn't worked for you 😞

From reading around, IVF protocols can vary depending on your situation and the clinic, you'll get a better idea once you have an initial consultation (if you do decide on this route). My protocol didn't change for IVF, stayed on pred, intralipids, cyclogest although they did add in daily fragmin injections to thin the blood even though I don't have any identified clotting issues I think there risk goes up slightly with IVF so it's just a precaution. Then on top of this from CRP clinic, the IVF clinic give you drugs for about 10 days to stimulate the ovaries and to mature the eggs and stop you naturally ovulating. Normally the IVF clinic would also prescribe progesterone as well, I didn't need any extra as we were on enough from CRP. Once the eggs are collected there isn't anything different from the usual CRP protocol I don't think. Just timing of when you do stuff with the transfer.

I was terrified and quite depressed about the idea of IVF at the start but once you get going it's fine, some physical discomfort around egg collection but totally manageable. I'm a total convert now 😂 I also think we have all been through so much already that is much worse. IVF is only a positive for me now. Apart from the financial side 😬 the price can vary between clinics as well.

Have a look around your local clinics as sounds like Epsom would be a bit far for you to go. Take a look at www.hfea.gov.uk
for a list of them. You can search by location and see their success rates.

In terms of diet yes I have changed it, been making real efforts to eat plenty of dark green veg, very little red meat, reduced (but not none) carbs, increased protein, more olive oil, more fish. I buy a big bag of kale each week and shove some in every dish. I'm so sick of kale. We still get takeaways every other week as that is basically our only "fun" thing as we've been isolating since May.

@Ralowi I've been struggling to sleep as well I think it's partly the pred and partly the progesterone. I've been doing sleep breathing/meditations from my yoga teacher that have helped me sometimes. I woke up at 4am today and didn't get back to sleep 😴 Ubiquinol is supposed to be a key thing you can take to improve egg quality though so keep taking it if you can!

Ralowi · 11/08/2022 15:11

@Tgrf55 I'm really thinking this is the end of the road for us. I've had a week of poor sleep and feel like I'm verging on depression. I cant imagine feeling this way with 2 children. At the time we decided to start trying I was in a really good place and positive, but that's all changed. I was prepared for the pred side effects and we decided to give it one shot. My husband basically cleared his diary for that 10 days and if it worked I would put up with insomnia but at least I'd be pregnant. But if I can't even deal with the supplements it's not going to happen. Which is annoying having spent all the time and money but at least we have an answer for all the miscarriages

@Amy00 so sorry to hear about your scan.
I know exactly what you mean about epu. It's so annoying because they see a heartbeat and think that's it, even if the dates are out. I think they either just don't trust your dates or don't know enough about it. I used to sit on mumsnet for days on end between scans trying to see if anyone had a positive outcome. You just can't help be hopeful and yes I did find some stories where the baby had 'caught up' but for me sadly that never happened. Like you I've started to wonder about surrogacy but the costs are extortionate and it's technically not legal in the uk?!! It would be a strange feeling to have someone else carry your child wouldn't it. I said to my husband I bet one day way past our life spans they will be growing babies to full term in labs! X

Tgrf55 · 11/08/2022 15:22

@Ralowi that's a shame but you have to fo what's right for you. I didn't have any side effects from CQ10 at all, are you sure its that causing it? I don't think its known for side effects.

Ralowi · 11/08/2022 16:17

@Tgrf55 I'm not sure but I feel like it something I've changed fairly recently and the only other thing is the vitamin d. Apparently some people can be really sensitive to the co q10, but that's obviously me just googling and finding the worst as usual. I know what will happen is I'll get my sleep back on track and I'll forget how bad I actually feel right now. I'm just imagining the worst which is either we will go through it all and not succeed or we will be successful and then I'll feel like this with 2 kids. I know I shouldn't moan about that on here but I don't know if I've got it into my head that 2 children is the be all and end all when for me maybe it isn't

Tgrf55 · 11/08/2022 17:05

@Ralowi i do think you need to believe in the plan if you're going to spend so much money and it doesn't sound like you do? Maybe try and get in a better head space and have a break before starting it. I know you're worried about pred side effects but you really wouldn't get many, if at all from 10 days. If you're taking it for longer it would mean you are pregnant and that would be the most important thing so you wouldn't even care about the side effects if you get them. I would have a think about it though as you seem really negative about the plan in general but obviously we all need to believe in it a little.

Ralowi · 11/08/2022 17:08

@Tgrf55 I know sorry I didn't mean to be negative on here, I was just hoping I could work out what was causing my issues. It's probably not a good idea to post I suppose when feeling low. I believe in the plan, I just don't believe in myself!

Sezmarelda1 · 11/08/2022 17:33

@Ralowi what time of day are you taking your vitamin D? It's caused me sleep issues in the past and I've found it's something I'm better off taking early in the day.

Ralowi · 11/08/2022 17:44

@Sezmarelda1 I was taking all the vitamins at once around lunch time as I take my thyroid meds in the morn. Then realised it says to take the coq2 at 3 separate times not all at once so I changed that and maybe was taking the third one too close to bed. I have noticed some stomach type pains and wondered if that was from the vitamins (or one of them). Its hard when you start taking more than one thing to work out which is causing the side effects. All I've read about vitamin d is the more you have the better you sleep!

MrsMargot · 11/08/2022 19:55

Hello all,

I have not been here in a while. It has been a bit of a rollercoaster for me but to make a long story short, I fall pregnant (was under the exact same protocol I was with my successful pregnancy 3 years ago) but we sadly found out this week that the baby did not make it. This is my 4th miscarriage and the first on Dr S protocol. I was away on holiday and I did not have a scan in 3 weeks. I did have a drop of spotting around 6weeks so that was the end.
I am currently waiting for a D&C at the Dr S clinic. (It is super expensive but they said the testing can be done quicker than the NHS)

I am so defeated. In a way I hope this baby had a genetic abnormality because if it is not the case I do not know where to go after that.

lots of love to everyone!

Sezmarelda1 · 12/08/2022 08:41

Big, big hugs @MrsMargot , I'm so sorry. I hope the cytogenetic testing gives you some answers. I felt similarly about my last miscarriage, hoping there was a genetic abnormality, as that would mean it wasn't a treatment failure. I hope the D&C goes as well as it can x

MrsMargot · 12/08/2022 09:19

@Sezmarelda1 thank you very much. Much appreciated. I am sure it is needless to say as you know the feeling but the numbness and the sadness is something else… I was hoping I would not have to go through this another time 😕

what happened with yours if you do not mind me asking? Was it genetics? I am trying to see what the next steps would be for me. I am already on the complex plan…

Sezmarelda1 · 12/08/2022 09:43

I totally understand the feelings @MrsMargot , it's so difficult. Especially if you say your successful pregnancy was on the same treatment plan I think that makes the frustration even greater. For my successful pregnancy I was on just Aspirin and I was convinced it was the answer to my problems at that point, but then I went on to have 3 more miscarriages on Aspirin so clearly it wasn't the answer after all. With my latest miscarriage we sent some tissue off for cyctogenetic analysis but the miscarriage was so early there wasn't enough there for them to test in the end, so we didn't get any answers. My hcg was very low and not rising properly in that pregnancy, and I miscarried very early (5 weeks) compared to my others, so we've just assumed on that basis it was probably a chromosomal problem. That made it a lot easier for me to accept and try again, even though we don't know for sure. I'm under the NHS and we've added heparin to my treatment plan but otherwise kept the rest of my meds unchanged (progesterone, prednisolone, aspirin) for now x

Sezmarelda1 · 12/08/2022 11:46

Does anyone else keep having issues getting hold of Cyclogest? My GP surgery has it's own pharmacy and they would normally dispense it for me, but for the third time now they've been unable to get hold of it. My local Boots has some in stock thankfully, but they say they can't currently order any more as it's out of stock with the manufacturer. I don't want to panic anyone as each time this has happened I have managed to get some after ringing around, but make sure you leave plenty of time to order more in case of issues!

VenusStarr · 12/08/2022 18:44

Oh @MrsMargot I am so sorry ❤️ I have also had losses on the plan (no success yet) and its just heartbreaking. My first was a chemical and I think progesterone issue, but my second was a mmc after seeing the heartbeat. Mine wasn't a genetic abnormality, so Dr S has added gcsf to my plan, but I'm yet to try it because I'm doing ivf and struggling to get my lining up to scratch to do a transfer.

When are you having the procedure? I had a hysteroscopy with them in April and they do really look after you. Lots of love.

@Sezmarelda1 I hope you're doing ok.

@Amy00 When's your next scan? I hope it's not the news you're expecting.
With my ivf protocol, he added in fragmin injections even though I don't have clotting issues. Apparently it helps implantation and I have been pregnant twice through ivf after not conceiving naturally on the plan. Who knows it there's a link.
Other than that, my protocol is pretty similar to my natural ttc plan. I'm pretty much on all the drugs! Plus lots of hormones.

My update is I'm still limping on with this frozen embryo transfer cycle, scan today showed some progress, but my lining is still on the thin side. I've got estrogen patches now as well as oral meds and back next week for another scan. I'm preparing myself for another cancellation but maybe I'll be pleasantly surprised! 🙏

Hope everyone is doing ok 💕

Amy00 · 12/08/2022 20:09

@MrsMargot so sorry to hear your news 😞 I am in a similar position having found out on Wednesday the baby is measuring a week behind and almost certainly a miscarriage, but we have to wait for the heart to stop before they can progress things. There may be a slight glimmer of hope that it will catch up but in my mind it's 99.9% over. This is my first loss on DrS protocol as well. I am also hoping it will be a chromosomal issue otherwise it does feel too overwhelming. Obviously there would be other things to try like Venus has said they added GCSF for her but I was so optimistic we were addressing the issue with the pred and intralipids! I think I'm going to do medical management with the pills at home again, I've never had a D&C. Hope you're doing ok xx

MrsMargot · 12/08/2022 20:20

@VenusStarr thank you very much ❤️ I am sending a hug back to you. It really is heartbreaking…. I keep on thinking that I must have done something wrong this time. I know is not the case but I am in the thick of it at the moment.

My procedure is the 18th because they could not do it earlier but I think I won’t make it until then. I have started spotting so I am expecting things to move during the weekend. They have given me instructions to try and catch ‘things’ at home but it sounds too far fetched…

what is the gcsf if you do not mind me asking? I am aware of hydroxy and possible intralipids on ovulation (which I am hoping to avoid because I really do not know if we can afford it 😬).

Amy00 · 12/08/2022 20:20

@Sezmarelda1 how are you doing? I hope you have some more positive news as it feels a bit miserable round here at the moment! Yes there is a shortage of Cyclogest and lots of IVF drugs right now. I've seen a lot of frantic posts from people on the IVF message boards. People are getting their rounds cancelled because the clinics can't get hold of the drugs. Make sure you get what you need well in advance ladies!!

@VenusStarr my next scan is Thursday back at EPU. I also have the 8 week scan at CRP and intralipids scheduled in for Friday so I emailed them to let them know the situation with all the scan reports etc asking their advice but just got a message back from the nurses saying Dr Edge said to book a scan appointment as she wants to scan herself. I'm obviously not going to travel down for a day to Epsom for a miserable scan - especially when I am booked for Friday anyway - so I found that response completely useless and irritating!

The difficulty will be if there is still a heartbeat at EPU on Thursday I will feel obliged to go for the intralipids on Friday (and might as well do the scan at CRP as well) just in case. If it hasn't grown at all I won't go. But if it has grown a bit and is still going I'll have to go even if I know its a complete waste of time! 🙄

That's interesting about the fragmin and implantation! They are horrible injections - I keep doing them each day even while I know it's pointless now!

Really hoping your lining sorts itself out this time for you!!

MrsMargot · 12/08/2022 20:29

@Amy00 Mu Gosh I am so very sorry you are going through this. I sucks… having said that, I have a very good friend that their baby was always a week behind. She was born smallish but healthy. I do not want to give you false hope because it can very well be the opposite (one of mine was measuring behind but the heartbeat was not strong either).

I need to find out what this gcsf is 🤔. I have had 2 D&Cs (one after medical management because it was needed) and a natural mc. I definitely prefer the D&C (if you can really say you ‘prefer’ something in this situation) but I find it less traumatic….however it looks like that I will pass everything in the next couple of days on my own.

VenusStarr · 12/08/2022 20:35

@MrsMargot I have managed to catch my pregnancy and we preserved it overnight and home and got results from cytogenetics. So if things do start over the weekend, it is possible to collect. I used a sieve and a bowl and we kept him in the fridge. I'm sorry, its such an awful thing to go through ❤️ but don't worry if you don't manage to. I always remember Dr S saying to me that he didn't think I was losing abnormal pregnancies and recurrent losses are rarely chromosomal. It doesn't give comfort I know, but I would think he would look at protocol changes.

So my loss was on hydroxychloroquine, prednisolone, intralipids, aspirin, cyclogest, lubion and fragmin (feel like I've missed something!) Gcsf is new for me. It is similar to neupogen which is to boost white blood cells. Dr S told me it's anti-miscarriage. So I would do an injection from 5 days before transfer and every 3 days until 10 weeks. It is pricey though.

@Amy00 they said similar to me when I'd had a scan at epu and they'd seen the heartbeat but no yolk, but like you I couldn't face travelling all that way for probable bad or inconclusive news. Its awful being in this limbo.
Thank you! I'm hoping these patches give my lining a boost! X

VenusStarr · 12/08/2022 20:38

@MrsMargot there's not lots of found on Google about gcsf, but if you look up neupogen, there's more information. I don't fully understand it, but am willing to try it. X

Sezmarelda1 · 12/08/2022 20:53

I'm doing okay thanks @Amy00 , I had a scan on Monday and we saw a heartbeat and the measurements were what they should be. I've been here before though and still gone on to MC so it's hard to feel much relief at this stage. I started Clexane after my scan and am finding it easier than I expected. It does sting a little bit but doing the injection slowly helps, and I keep telling myself if it works it will be worth the pain.

Today I found out my potassium level is low (I have had issues with prednisolone in the past (when not pregnant) making my potassium levels plummet dangerously low, although I thought it was a drug interaction then but it seems not to be...) and by the time my results came through (online) I wasn't able to get hold of anyone to speak to about it, and now of course it's the weekend so my GP surgery is closed. I'm hoping I can speak to someone at the EPU tomorrow morning as it needed quite aggressive treatment with potassium replacement last time and I ultimately had to stop the course of pred which I don't really want to do this time around if I can help it. Never a dull moment! It would explain why my heart rate has been high on and off this week - it was 136 at one point on Monday and I put it down to being nervous about the scan and starting the Clexane injections!

Amy00 · 12/08/2022 20:58

@MrsMargot I also managed to "collect" my last one at home and put it in a pot in the fridge, took it into EPU the next morning. It is grim. Take care of yourself and let yourself be looked after. It's just about survival at this point really. I wish we didn't have to go through this 😞 My last one was a trisomy issue. It wasn't under Dr S but we started the ball rolling before we got the results back and I've had 7 losses now so there is something else going on - I don't think 7 in a row can just be bad luck chromosomally.

Having just said that, I've been reading about people doing PGT testing ( testing embryos in IVF to check they are normal chromosomally before they are transferred) and there are a surprising amount of stories of couples having a shockingly high percentage of abnormal embryos. Like 18 out of 19 embryos abnormal for instance. Now not all of them would have implanted but you can easily imagine going through multiple miscarriages where that is the reason.

Amy00 · 12/08/2022 21:04

@Sezmarelda1 that's great news all is on track so far. Totally understand it's not much relief for you at this stage though. Just keep taking it day by day! Fingers crossed for you. The potassium issue sounds awful, typical timing of results too, hopefully EPU can sort you out tomorrow morning. Would A&E help? Doesn't sound like you'd want to wait until Monday really if you can. Let us know how you get on xx

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