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

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

@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.

@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?

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.

@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 🙏🏻

@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

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?

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

@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

@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.

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

@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?

@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 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 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!

@ginandtonicformeplease thanks! I'm on it!

So I've just had the results of my NK cells retest after having had 2 lots of intralipids - the activity level has actually gone up, not down. It was a different doctor I spoke to this time, and rather than throwing out choices he actually recommended a treatment path. Apparently 10% of women don't react to intralipids and I happen to be among them. Next treatment is humira injections, then retest levels again to see if that's worked. Slightly worried that he didn't mention a back up option if humira doesn't work - does that mean that's it?

Has anyone got any experience of humira? Against DH's explicit instructions I googled it and the side effects sound pretty potent, but I can't tell if that's if you've been on it for years rather than just two injections.

Hi @ginandtonicformeplease, i havent got any experience with the humira injections, but just last week at my review appointment with Mr.S, he mentioned i might need it if the tnf-a results came back high.
Did u do a test for tnf-alpha? or u hav jus been asked to take humira instead of intralipids? I know many ladies in the other forum take this for their raised tnf-a..and heard that humira is very expensive. i m hoping my results come back as normal!!

And for ladies taking hydroxychloroquine, has anyone had any side effects like ringing in the ears or eye twitching. I have both for quite sometime now and so worried. When i spoke to the midwife, she s jus asking to stop taking the medication and then come and see Mr.S, he seems to be on holiday till September..I dont want to stop hCQ after taking it for 8 months now..want to try with it once..

I hope everyone else s doing good..

Hi @ginandtonicformeplease sorry to hear your NK cells are going up 😟 I have taken Humira and no side effects whatsoever, it was 2 pen injections I did at home and didn't even feel the needle. I took it for TNF alpha cells rather than NK though, but it did work really well.
I did find it really difficult to track down though, no chemist stocks it or can order it in, will the clinic provide it for you? And if they haven't warned you already - it's expensive! 💰

@Hopeful07 @Chickjen Thanks for your replies, good to know you haven't had side effects. I hated the side effects from pred. The doc said that it's an anti-TNF med, so I don't know whether that's why they use it - there are so many different terms they use. He did mention that it's difficult to source, but they have a pharmacy nearby that supplies it so that's one less thing to try and track down. And yes, £1300 for two injections

I am seriously wondering whether I should just give this all up - it was bearable just having to go through IVF, but having all this extra on top of that is just getting too much. Not really the money (although obviously that is getting to be a problem) but the emotional rollercoaster that this is.

Plus my cycle still hasn't returned to normal after my last MC - I'm now on day 40 and no sign of AF!

@ginandtonicformeplease I paid £950 from Parkside Hospital Wimbledon if that helps at all.
You have done so well getting this far, keep going one day at a time xx

Ladies I need advice please.🤔 I had a BFP on Monday on 9dpo and tested again yesterday and today and the line does seem to be progressing well. The thing is I feel 99% sure this is another chemical, no sore boobs, but I do have a headache (normally a bad sign) and some really slight spotting. So the question is, do I go for intras? If I don't go tomorrow I can't go for the next 2 weeks.
Am I overthinking this, do I just go? I don't really want to waste £300. I have had 5 chemicals and 3 MMC so the odds are it's chemical.

@Chickjen Where are you based (roughly)? £300 seems a lot for intralipids - I found an independent place in London that will administer them if your doctor send over a prescription. Open 8-6 six days a week I think, and 'only' £200. I'm sure there must be other services like this! My clinic only offered them one afternoon and one morning a week so I had to look for alternatives.

And thanks for the info about Wimbledon - now I just have to work out how to get there!

@Chickjen mine cost £225 I think. Personally I would go as I wouldn't like to think about the alternatives in the future if it weren't a chemical. But I realise this is a hugely personal thing. Not saying anything else until you have more clarity other than that I've got my fingers tightly crossed for you xx

A positive only 9 dpo is a good sign. With my chemical miscarriages I only ever got very weak lines and they only appeared the day before I was due.

I know you can't rule out a mmc but so far I think you've got the best result you could hope for.
Id go for the intralipids.
Good luck x