Immune/NK issues - aka Pred Thread no. 22!

@ginandtonicformeplease thanks! I'm on it!

@KittyKatSmile First pregnancy I was constipated as anything, the nutritionist at the clinic recommended soaking linseed in prune juice overnight - if that doesn't work nothing will!

@summertimehere it's light and fuzzy like a little peach

I am taking some sort of children's laxatives (actually it's for adults too but it just tastes of sugar). It has no effect for days and then clears me out (charming) then I go back to nothing. Will try your tips, thank you!!

Keeping my fingers crossed for you xx

@KittyKatSmile is the hair on face bad? Did it come dark or light? I’m a wax specialist so if get that will whack it off lol, what symptoms does the pred give you? If you constipated try a ripe conference pear on an empty stomach and fizzy vit c... I think the gastro tablet I take before breakfast helps too are you on those?

Thankyou wed will be 10dpo

@summertimehere jeez I wish pred gave me those symptoms or that pregnancy symptoms included running to the loo.....! I haven't been in about 6 weeks I'd estimate Pred has just made me fat and fuzzy faced. As confirmed by a dear bitchy gay friend on Friday.

Glad to hear you've got a plan in place. It always feels better once you know what you're doing I find. Good luck for Wednesday; how many DPO will that be?

Hello all apologies not replied since I posted in July was very grateful for your advice @Chickjen and @Naticle it was all a bit of a whirlwind and I’m glad I read your opinions on his bedside manner lol and knew not to take it personally. Naticle stories like yours inspire me.

Results wise I have thyroid antibodies and anti nuclear cells but clear on NK cells (already knew had factor 5 Leiden and mthfr although Dr S said they are not relevant).

He said he was not surprised I’d had miscarriages with my treatment plan previously.

I was all over show after seeing him but it all clicked into place and I decided to put my faith in him and do all he says.

Tomorrow my last day of pred etc and test on Wednesday (although I did a sneaky Frer an hour ago was negative)

Did any of you find the progesterone gave you pregnancy symptoms? Sore boobs and running to loo?

It’s been a roller coaster on the pred but not as bad as thought majority of time I’ve been like the superwoman version of me and I’ve lost my appetite which is a winner lol I’ve a fair bit of chub to lose.

But right now I just want to lie on the floor and sleep.

Next step is super ovulation we’re skipping straight to that cause of my age.

Any side effects of it I should be aware of?

Thankyou for all your help

@kdd1980 welcome! Scroll down a bit. There has been plenty of chat about pred withdrawal in the last week or so. Good luck to you.

@EmsIMO when I ran out I used push doctor (an app) to prescribe me some more. It costs maybe £30 to use them but significantly less than seeing Mr S! I think progesterone supports a pregnancy so probably worth taking but of course it's up to you x

Hey @MrsMargot Sorry to hear about your MC - I think the Ladies @KittyKatSmile & @Naticle have answered your questions perfectly X Good Luck X

Hi @kdd1980 I think I had headaches the first round and definitely insomnia but I seemed to have these symptoms whilst taking rather than when I stopped. Good luck X

I have a Progesterone Question for you lovely lot please, if anyone can help! We go away next week and I've only just realised I don't have enough Progesterone (doh) I would potentially just miss say 3 days worth right at the end around test time. What are your thoughts re missing just a few days worth of the lovely pellets??!! Are they just a back up to support our immune system if any pregnancy occurs?Any input appreciated XX

Hi there, please can I join?

I am just finishing my first cycle on Pred, aspirin etc with Dr S. I've been under his care for a couple of years now having had 6 MC's since having my son 4 years ago (conceived him with no issues!). I'm 38 have PCOS and Endo and feel time is ticking!

All my bloods have come back normal but I do have an auto immune disease so Dr S thought it might be worth me trying 5 cycles on his plan. This is our last ditch attempt after 3 years of trying.

I feel pretty awful having stopped the pred so abruptly after 10 days and wondering if anyone else has felt like that?

@MrsMargot I am with Zita West and the doctors have been really good with the protocol. They got me pregnant first time and so far, I've stayed pregnant (I hope that won't jinx things but I've got 50% further than I've ever been before). That said, I haven't had to change the protocol etc so I don't know how they'd be with that but they seem to know what they're doing.

Like @Naticle I had mixed feelings towards Dr S but in the end his manner was too much for me, especially when diagnosing my last miscarriage and I do feel like I spent too long sort of stagnating on his protocol.

Why don't you book an initial consultation with the IVF clinic, take your test results (one big thing for me was that they would use your previous results rather than repeating which some other clinics would do) and ask how they would see things progressing and what they would put you on both initially and if that didn't work?

Very best of luck to you x

@Naticle You are giving me hope. I was thinking of booking an appointment with him to see how I get on with him. To be honest I like an honest approach. I have done a million tests (all privately paid) and I really do not mind repeats if he can put me in a protocol that is appropriate for me.

I currently have 2 different private doctors. Both VERY different but they agree on the protocols which is good. However, I am on these ‘just in case’ and I was told that ‘next time we shall try heparin injections just in case’. I really do not mind taking any type of drugs but this ‘just in case’ it kills me. I shall research the hydroxy for sure and I will see how quickly I can see Dr S.

Thank you 🙏🏻

Hi @MrsMargot
Why not book an initial appointment with Dr. S. and ask if he will accept the upcoming tests? He'll explain (bluntly!) what you need to do.

I had numerous tests for recurrent miscarriage via axa ppp. These were then repeated by Dr S when I started seeing him appropriately 9 months later. (9 months was deemed too long at my age (then 42).

I had had 4 miscarriages prior to seeing him when like you I was prescribed pred, aspirin and progesterone. I became pregnant on this schedule and had yet another miscarriage.

I returned to him and similarly to @Wishing5tar hydroxy was added to the treatment. With success.
I had mixed feelings regarding dr S. throughout the treatment and now know I should have trusted him implicitly. I could kick myself for being so negative.
I saw him in both the Harley Street and Epsom clinics so if you have access to both I'd book the first place he can fit you in.

Thinking of you.

@KittyKatSmile thank you very much. Actually this is a good idea. I am based in London but I would go ANYWHERE. Would you mind sharing your clinic?

@MrsMargot so sorry to hear your news and sorry for your loss. If you are going to go down the IVF route then you could find a clinic that will sort of treat your recurrent miscarriage at the same time. This is what I've done this time and their protocol is very similar to that of Dr S without having to pay twice. Where are you based? Hope that helps. Take care and don't lose faith.

Hello ladies,

Apologies I have been MIA. Unfortunately I have just suffered my 3rd miscarriage. I am not sure how to process this. This mc is awfully similar to the first one I had a year ago (almost identical) and back then I was not taking anything. This time I was on pred ‘just in case’ 2 baby aspirin and progesterone. I really do not know what makes sense and what does not... I am determined to do genetic testing to the embryo this time in case we can find out more.

What I need now are some leads as to what to do next... I have started reading the tread backwards and I find interesting things. If anyone has any insights as to what is best to do next please do share. I will be eternally grateful.

The set next step I know I have is a meeting with the NHS recurrent miscarriage specialist in September. My DH is determined that the embryos are chromosomal abnormal (we do not know) because of potential abnormalities he is carrying ( his brother has a syndrome) so the best step is to go for IVF. We had karyotyping done and it was normal for both of us... I really do not know.

Do you think it is worth paying privately for Dr S? I have normal NK cells but positive ANA hence my consultant prescribed pred...

Lots of good luck to everyone!

Thank you Ladies @Chickjen & @KittyKatSmile really helpful XX Yep I started Pred today and will take for a few days. The first email I had yesterday from nurse Geri wasn't that helpful, but a follow up from Nicola that I had after messaging on here put my mind at ease. She essentially said that the steroids give you an element of immunity i.e. I should be fine. I didn't know that re his NHS patients ... basically phew and relax! Thanks again XX

@EmsIMO If it were me I would start the pred now and book for intras if needed when you are back from your holiday. Try not to stress or beat your self up over this ❤️ Remember MrS's NHS patients don't get intras at all and there are plenty of Dr's/clinics who only prescribe pred from BFP. If you start now you are still ahead of the game. Our own sunshineblonde1 only started pred from BFP and didn't have intras till a week or so later and she must be around 7 months now. 😀

@EmsIMO it really depends how you'll feel based on the various potential outcomes? There's no harm in starting it now, especially if you're not going to be able to get the intralipids straight away if it has worked for you. And then stop if necessary to try and avoid the Beast type side effects.

Fingers crossed for you x

Me again - I'm panicking slightly now and could do with some input from anyone please! We opted to just try naturally this month as holiday dates fall mid cycle, and we had decided that I wouldn't take Pred, but the clinics email just now (from Geri) has thrown me a little, she says they wouldn't recommend we try naturally without taking medication.

I'm currently on CD 21 and ovulated last week and haven't to date taken any Pred. Should I bother taking it for a few days, then test? But we're then on holiday next week so if by magic things had worked, I can't go into the clinic (we're only away for 8 days)? Or do we throw caution to the wind and not take Pred (given it's not worked naturally/at all for nearly 4 years now).... ARGH!

Any advice appreciated X

Hi Ladies

@Belarita Pleased to hear you got Ovusense! The information it gives you is brilliant I think so good luck X

Hi @ginandtonicformeplease Thanks for the info X

Great news @DaniMERL X

A general brain dump - I was having the pains right at the start of my cycle so before even thinking about not taking/stopping Pred. I've messaged the clinic and they advise 1, not to just stop pred because we've tried naturally this month - unhelpfully they've not told me whether to just start taking it from tomorrow (I'm on CD 21 and ovulated last Weds/Thurs) Any thoughts? And they advise 2, that they're not sure what the pains are from and to chat to them next time we're in. I'm probably just rather unlucky and have just had some weird side effects!

@Wishing5tar sometimes I count when I have trouble trying to stop thinking, but mainly I just try to keep my mind empty for as long as it takes to fall asleep. It kind of feels if you are counting then you are still actually thinking about something - the counting! I'd be interested to know if it works for you, or if I am just weird! 🍀😂

@DaniMERL wonderful news ❤️ Do you feel movement yet? And if so, does it help reassure you?

@Wishing5tar I'm 9w5. Harmony test at the end of this week.

This isn't perfectly relevant but I've been using an app called Mindful IVF and it's really really good. I am generally hugely sceptical about these sort of things but I've found it a real support. It's free to download I think and there are loads of sort of modules, including one on anxiety and sleeplessness which may help... worth taking a look.

Good luck to you. And great idea about taking a holiday. Yasss.

@DaniMERL fantastic news! As if you’re almost half way already 👏🏽 I never even thought that it could be the hydroxy giving me headaches and/or the Pred - they haven’t been as bad the last couple of days so I’m hoping I’m over the worst of it 🤞🏽 As much as I’m frustrated by having to take a break I do honestly think it’ll do me good! I think we’re going to book a holiday for next month & I’ve started trying to focus on what I’m eating again as doing personal training 3 times a week takes it toll when your running on 90% bread and cheese 🙈😂 oops!

@KittyKatSmile how far along are you now? ☺️ & I bet you do NOT look like chewbacca 🙈

@Belarita aww I’m sorry to hear you’ve had such a bad time coming off the Pred 😣 hopefully it was just a one off and you don’t have to go through the same again 🤞🏽 I’d be interested to know what you make of the ovusense? I was looking at getting one before and might now invest so I can track ovulation/ learn more about my cycle during the next 6-8 week wait.

@Chickjen that’s a really good tip about emptying your mind. I’ve definitely found sleep a struggle lately so I’ll be giving that a go tonight ☺️ Might be a silly question but do you set an actual timer? Or just count to 60?
I’ve also done CBT too and found it really helpful - I’m pleased your noticing improvements! Colouring in really helped on the days when I just couldn’t shake that ‘sadness hangover’

Xxx

Sorry; I'm not really winning at life this week am I?!