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

Congratulations @HarrietM87 that's excellent news! X

Congratulations @FrannyAnny82 and @HarrietM87, that's such brilliant news!x

Great news @FrannyAnny82 & @HarrietM87 when are your next scans? X

@hrtbrk2 Hi, I've not yet seen Dr S..just postponed my appt until end of June due to the whole corona situation.

I'm 26, and have been trying since July 2019.. fell pregnant straight away but unfortunately ended in MMC, had D&C in October. Since had 2 CP, one in December and one just last month.

I was really keen to see DR S, but decided due to what is happening everywhere it wasnt ideal for us to part with the money at the moment.

Xx

Thanks so much everyone, and for the support on this thread which is incredible. My next scan is in 2 weeks. @mezgaski did you start weaning off the pred completely after 10 weeks? And how many days on each dose before dropping down? It used to be 5 but the more recent advice was 3. My plan is to stick at 20 to 10 weeks and then 15 to 12 weeks I think. @FrannyAnny82 what are you going to do?

@HarrietM87 I’m weaning 5mg every 4 days as I’m also on hydroxychloroquine. I’m 11+3 today and on 10mg at the moment so I’ll be off them completely by 12+2 although I had a private scan last night as I was feeling so anxious & I was measuring ahead at 11+6. I keep on the hydroxychloroquine until 16 weeks.

Thanks for your messages ladies. I know you’ve all been there multiple times before, we are superheroes for dealing with this shit time after time. I just feel numb, I’ve barely cried. I just know I’ve dealt with this before and have to again. I’m going through the motions but feel like a robot.

@hrtbrk2 my story is I’m 39, have had 4 losses in the last 1.5 years. 1st one October 2018, at weeks. Pregnant again in November, lost it December 2018 at 6 weeks. Diagnosed high anti phospholipids, pregnant May 2019 treated with aspirin and heparin but missed miscarriage at 8 weeks, stopped growing at 6. Saw Dr Shehata August 2019 and on complex plan, most recent pregnant March 2020 with empty gestational sac, missed miscarriage this week. Not sure what’s next... feel like I’ve run out of options?

@mezgaski do you know why you are on hydroxy as well as pred? Glad it’s working for you; I’m not sure if he’ll try me on that next?

@FrannyAnny82 @HarrietM87 glad your scans went well.

Hope everyone is managing in these crazy times.
X

Hi @Eeviee Are you back home now? Wish there was something I could say to make it better, it's such a shit time. No-one should have to go through this. I know it's easy to say but try not to lose hope - fingers crossed this was one-off chromosome thing and the next one will be the one. Rest up and take care of yourself xx

@HarrietM87 I'm still gobbling 20mg, I keep meaning to reduce then get the fear and take an extra one! I don't know what to do for the best. X

Thanks for all your stories - I hope I haven't commandeered the thread and annoyed anyone. Such a mixture of scenarios it's so unfair.

@Eeviee I know how you feel - that's exactly how I felt when I mc'd after seeing dr quenby, I'd pinned all my hopes on that being my answer. Do you feel it's worth still trying again with Dr.S plan on the basis that even with all the treatment we are getting unviable pregnancies will still mc? I know that's little compensation at this point but would be worth discussing with him I'm sure he'll shed some light for you xx

Xx

@hrtbrk2 thanks, my plan is to wait and get the results from genetics which I really
hope they can give me. Then I’ll speak to Dr S. Im almost hoping it shows chromosomal abnormality as nothing could have stopped that. If not then I don’t know, I’m unsure what more he can do; I’m also feeling the pressure of age as I turn 40 in December but I just keep reminding myself plenty of people have babies into their 40s. x

@Eeviee Sending you lots of love & virtual hugs! Dr S added the hydroxy for me after I’d had a miscarriage on the Pred. When I asked if this was our final option he was adamant there was lots of other things we could try if a combination of Pred and hydroxy didn’t work. His knowledge is vast and sure he’ll have the right combination for your Rainbow Baby 💕

@hrtbrk2 Welcome & so sorry for your losses. I’m 29 and we started trying in October 2017 (although we hadn’t been preventing & just seeing what happened since we got married in July 2014). I have had 4 miscarriages, all early between 6-7 weeks. The first was March 18 then July 18, January 19 & July 19. In September 2018 I was diagnosed with melanoma skin cancer so was undergoing treatment and then again in February 2019 I had my second round of surgery so we think the stress of that may account for the breaks in us falling pregnant. My last miscarriage was when I was under Dr S on his high programme. Since then he added in hydroxy and put me on his complex plan too and I’ve yet to fall pregnant again 🙁 We waited the 6-8 weeks for it to be in my system and have had 7 cycles of trying since. Our plan was to start super Ovulation but then the Corona outbreak happened & Dr S advised us to take a break 💔 I’m having a break from the Pred this cycle (Dr S said he would’ve recommended this anyway given how long I’ve been on it) and just trying with a half dose of hydroxy. All of my pregnancies I have been in and out of the EPU from BFP. Usually I have heavy bleeding when AF would be due & don’t get a strong positive until after this. It could be heavy implantation bleeding but it’s slightly later than it should be and Dr S suggested it was probably the first sign I was going to miscarry. I’m yet to see anything on a scan as my HCG has never been high enough. Whilst they would calculate that I’d be 6-7 weeks I don’t believe I’m getting much further than 4-5. So that’s me - still plodding along, wishing this bloody virus would disappear & hoping for a miracle soon 🤞🏽

It’s been lovely reading everyone’s bio’s and finding out a little more as although I’ve been posting on here for a little while, I still loose track of everyone 🙈 xxx

@Wishing5tar thanks for sharing your background - I really hope once this is all over you see the light at the end of the tunnel - did dr S shed any light on why it may have taken a wee bit longer to fall or is that pretty normal? We always take a while to fall naturally which is a bit of a worry as I don't feel comfortable just continually taking hydroxy for long periods especially as he wants me to take it to term once I get a bfp

@Eeviee I hope you get the answers you're looking for - I know what you mean, as much as it would be sad news at least it would give you some explanation.

Sooo I've tested negative today on round one of dr.s plan (no surprises there!) so will stop my pred today - can I just check though do I stop the cyclogest today too or do I take that until af arrives?

Thanks ladies xx

@hrtbrk2 A few other ladies have found that the meds have meant it’s taken longer to fall but Dr S says it doesn’t have any impact 🤷🏻‍♀️ I wouldn’t mind knowing it would take longer if I knew it was the right combination and we’d get our take home baby.

I’m sorry to hear you got a negative test but it’s not over until AF arrives ☺️ Yes you stop Cyclogest too and just go back to your usual vitamins & hydroxy xx

Hi ladies,

I hope you're all ok and managing as best you can...

So I have results from Dr S. I'm on the complex plan as have high ANA, Th1/TH2 cytokine ratio, and very high NK activity. FS8 test was fine but hubby needs to take impryl and do some investigations including urine test and scrotal scan (when the specialist can do them -he is currently self-isolating).

But Dr S wont prescribe the hydroxy or pred at the moment. So, no prescription potentially until June. And then 6-8 weeks from then. That is a LONG time. I said I wouldn't drink today but I might just change my mind #passmethewine !

Hope you're all ok. @Eeviee thinking of you and to all the other ladies navigating this whilst pregnant , you absolute heroes! KT xx

Hi All,

Hope you are all doing ok and staying safe.

@Eeviee I hope you are looking after yourself and recovering as best you can, do you know when your results will be through? I know what you mean about feeling the pressure I also turn 40 in December, but you are right so many people today have babies in their 40s, we all just have to keep the faith.

@hrtbrk2 sorry to hear about the negative, but I think you should keep testing as it's not over yet, it's so early to test.

@KtAgs I'm glad you've got your answers hope that has helped you feel better to have a bit of a plan, even if you can't start it for a little while. I would 100% be enjoying the wine if I were you.

So in a complete and utter surprise this morning, I did the First Response and would you believe it says preggers?!?! I'm literally 10dpo, the line isn't as dark as the control, but I suppose it's so early that's to be expected. I'm now wondering what to do, I've got enough of pred and cyclogest for a few days, but will need another prescription shortly. I've called my gynecologist and his secretary has informed me that they're shutting down all Spire hospitals so I don't know whether I can get an apt. My OH is not keen on Dr S so I don't know whether to ring him or not and he's definitely not keen on me taking the Intralipids. Does anyone know if Dr S even still doing those? In my 'relax and see what happens during Coronavirus plan' I actually didn't think through the part of what happens if I actually got pregnant!

Hi to everyone else, hope you are all doing ok!

@Countrygirl220 Congratulations! Did you take the Pred from ovulation or just thinking of starting it now?
Dr S is still doing Intralipids. There is an update on the CRP clinic website that states “In general, there is no particular known concerns with intralipid infusions and viruses.”

Dr S should be able to post you a prescription or have one delivered to you through Pharmacierge. I’d drop the nurses an email and see what they say. They usually come back pretty quickly ☺️ x

Thanks @Wishing5tar that's really helpful, I'm now a bit terrified. In the end I bit the bullet and took the pred from ovulation albeit I think I was a couple of days late as I wasn't sure exactly when I ovulated. I've managed to get a telephone apt with the gynaecologist tomorrow so I'll see what the situation is with him otherwise will call Dr S - it's just a bit hard because my OH is not a believer or a fan. But I'm wondering how important the intralipids are in the whole treatment, any thoughts?x

@Countrygirl220 Im pleased you managed to get an appointment ☺️ Let us know how it goes?
I know that Dr S doesn’t offer the Intralipids to the NHS patients he sees at the Epsom clinic so I do wonder if they’re nice to have rather than a necessity. Is there no where else that could give you the Intralipids? What is it that your husband doesn’t like? I know his bedside manner isn’t the most comforting but I’ve always thought he means well, he’s just very direct x

Gentle congratulations @countrygirl220. Lovely news to hear x

Congrats @Countrygirl220, fingers crossed it all goes smoothly for you.

Thanks @Wishing5star, @KtAgs & @Ultra26 for your wishes it's lovely of you. I really appreciate just having some people who really understand.

@Wishing5tar he's not that keen on his manner, but more fundamentally he just doesn't believe the science. He's a very logical, analytical type. The immune thing has really been my crusade in an effort to find some answers, he's just come along to please me. I can't (despite many efforts / conversations / putting the Dr. Beer book on his bedside table etc) convince him otherwise.

I've just had a long conversation with my doctor (who incidentally has just had Coronavirus and been in hospital). He said whilst it's my decision and he will give me the pred, that if he were me he would not take it right now. My OH is now keen that I stop it immediately too. So now I'm in a bit of a pickle, while my heart says keep going, I don't think I can blatantly disregard my OH's feelings in this climate, it's just not fair. Even if it means the worst . So I think I have to stop taking the pred & hope that the cyclogest, aspirin etc might help. Does anyone know if you've only taken it for 11 days whether you can go cold turkey or do you wean off it - and by how much? Sorry for the questions and thanks in advance.

Hope you are all well and staying safe x

Hi everyone!

@Freelancegirl I just wanted to say how thankful I am to have found this thread. You cannot imagine how important it has been to me and how the ladies here have kept me going! I am almost 24 weeks on Dr S programme with my first after a lot of heartache. Thank you!

@Eeviee I am so sorry... it sucks... I know what you mean by being numb. When I had my 3rd loss I was like a zombie. A million things were going through my mind... Also, do not think of age as an issue. From what I gather, age is just another number. sending you all my love. Everything will be better soon ❤️❤️❤️

@Countrygirl220 congratulations!! it is up to you what to do but I would keep up with the pred and I would do the intralipids if I could. I am only saying this because both served as a safety blanket for me. Having said that, I would do it if I was able (and prepared) to stay inside no matter what. 😘😘😘

@Countrygirl220 hi countrygirl. I only log onto this page now rarely but am really pleased to see Mrs margots news.
I was under Dr S and because it all sounded complete quackery was scared to tell anyone. I was 42 when I conceived and now have an 18 month old little girl. All thanks to the treatment.
I had 4 miscarriages prior to seeing him and 1 during the treatment.
I know it sounds far fetched (especially the intralipids) and I managed to skip the last one.
After 10 days you can stop immediately but after that it's a case of weaning.
Phone him. I think ordinarily if you've not been his prior patient he'd shoo you away but the world's changed so his process may too.
Good luck x

Congrats @Countrygirl220! What great news. I would agree with the others and I’d go for it and keep going with the pred & do intralipids but I appreciate it’s hard when your DH isn’t on board and at the moment it’s even harder to persuade them due to the concerns about immunosuppressants- but we can’t go anywhere so hopefully you’ll be safe at home. I just felt this time that I should throw everything at it and feel I had done everything you could. I think what scares you more? Stopping the meds & trying with the other stuff or having an argument with your DH and going against him? It’s a tricky one, sending positive vibes your way.

@Eeviee re the hydroxy, if I’m honest I’ve been a bit naughty as my local consultant prescribed me hydroxy but only 200mg but is very anti pred from ovulation etc. Mr S’s tests showed absolutely nothing wrong with me at all - I’m perfectly healthy no issues so he wouldn’t prescribe hydroxy as I’d not gone his first plan with pred from ov. Obviously I couldn’t decide what treatment plan to do and in the end combined the two, so did Mr S plus the lower dose of hydroxy. My DH wasnt pleased as I didn’t tell him I was taking the steroids from ov (on my bfp cycle I think I was a few days late & only did 20mg) but then it worked and now I’m 13 weeks today! So in answer to your q, Mr S didn’t prescribe it but I knew I wanted to throw absolutely everything at it this time & fingers crossed it’s working. I’m off the steroids now & just on the hydroxy, aspirin, prog.

@KtAgs how do you feel? I really wanted to find something wrong with me so in a way at least something has come up? Frustrating about not being able to get started on the hydroxy though especially as it’s being looked at as a possible covid treatment!

@HarrietM87 & @FrannyAnny82 how you getting on?

Oh I’ve missed loads of messages on here!

@Countrygirl220 congratulations! Tbh I don’t really believe in the intralipids. Mr S doesn’t prescribe them to his NHS patients and apparently results are similar. But he insists on them so if you want to follow his plan you’ll have to have them. I certainly don’t think they do any harm, it’s just annoying have to pay! I can understand your DH’s feelings. Before I had my son my mum was really against it - she read loads and tried to dissuade me, basically told me his was a quack. Then I had a beautiful baby. And my mc last summer when I didn’t follow the plan to the letter proved to me that my son wasn’t just a lucky fluke. So basically I’d suck it up and do exactly what he says for this one.

@KtAgs I’m really glad you got some answers - what is the significance of your results other than the nK cells? It’s rubbish that you have to wait, but June is really not far off.

@Wishing5tar I’m so sorry that you have to wait as well, and also for everything you’ve been through. When you can try again I’d recommend SO. I ovulate alone and have never had issues conceiving but my DH is (or was!) away for work often so I liked being able to time everything perfectly, including when to start the pred. It worked first go with my son and third time with this pregnancy.

@mezgaski I’m feeling ok thanks...somewhere between 9.5 and 10 weeks depending whose dates you believe! My symptoms have eased off recently but I’m hoping it’s just normal. I’m due to have a scan this week but don’t think I want to risk the journey just for a scan so will try to postpone. I’m still on 20mg of pred but planning to reduce it next week I think.

@FrannyAnny82 how are you?

Hope everyone else is ok.