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Immune/NK issues - aka Pred Thread no. 23!

(91 Posts)
Chickjen Wed 11-Sep-19 22:33:27

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

Wishing5tar Wed 11-Sep-19 22:42:48

@chickjen thanks for setting it up hun 😘

KittyKatSmile Wed 11-Sep-19 23:48:42

Hi all and @Chickjen thank you so much for setting this up. I'll stick here from now on. Worth putting a link in the other one to here (I don't know how to do that; not just being lazy).

@zoe16 so sorry to hear your news. You do sound very pragmatic and together, hope you're doing ok. We're here for you.

@MrsMargot that is unbelievable. So frustrating. Agree that you should try to get bumped up the list after their error. Grrrr. I'm cross for you.

@Zest11 hello old friend. Lovely to see you here. Welcome to my other stomping ground. These ladies will be able to help out on any questions you might have and Mr S is certainly likely to be able to help you.

zoe16 Thu 12-Sep-19 00:20:44

@Chickjen @KittyKatSmile thanks ladies I spent a day or two in bed mourning but since then I’ve been doing surprisingly well. Honestly I’m just so grateful I found you ladies because I think much is contributed to hearing your stories and being hopeful and positive for the next pregnancy. I’ll take a month or two off before trying again and hopefully I’ll be lucky on the first try with the new protocol.

fnej01 Thu 12-Sep-19 06:18:26

@Chickjen thanks for the new thread.
Today is day 3 of weaning off the pred - woo hoo!!!
Hope all is well x

mezgaski Thu 12-Sep-19 08:47:24

@wishing5tar thanks so much for your comments I really appreciate it. Sorry for being unclear, I don’t mend starting the hydroxy (that would be in advance if trying) at bfp I mean the steroids - that’s where my consultant is very against Mr S’s plan as he’s very anti steroids after ov each month & being on them for a while. I know that’s his big thing (along with prog) & that’s where my decision lies - who’s plan to follow! Are you on steroids too and do you/did you take those after ov each month as well or just the hydroxy?

Hi @chickjen - thanks for the welcome x

Ps am also on all the vitamins etc - so many that I rattle!

Pop1234 Thu 12-Sep-19 08:55:36

@Chickjen thank you for the new thread. Hope you are still getting on ok.

DaniMERL Thu 12-Sep-19 09:07:47

@mezgaski I can only recommend Mr S and his plan. I have complete faith. Of course a lot of other doctors are wary and the meds are a bit experimental, hence he asks you to sign a form saying you understand the drugs aren’t registered for use in pregnancy.
However, I don’t know any successes like the ones he has and I speak with someone who has talked and met with a group of women who are all past and present patients. Some have their rainbows, others of us are well on the way. I am 25 weeks now.
I took the steroids with him initially. I had another very early loss. He then added Hydroxy and I had success.
I went to him when I was at the stage of total desperation and had exhausted other options and tests. He’s very expensive but I felt it was worthwhile and I’m glad I chose and stuck with him.
I admit I might have had a wobble after the first loss on the programme and I did feel on the verge of giving up with this last attempt.

DaniMERL Thu 12-Sep-19 09:17:55

@mezgaski *speak as someone

mezgaski Thu 12-Sep-19 09:19:27

Thanks @daniMERL that’s really helpful. I really liked Mr S & am keen on his protocol it’s just that my nhs consultant is offering me the hydroxy now whereas Mr S isn’t. Did you take the steroids after ovulation when you were on the hydroxy?
Thanks so much for replying x

mezgaski Thu 12-Sep-19 09:20:49

@mrsmargot - hello, thank you for the welcome.

DaniMERL Thu 12-Sep-19 09:24:55

Sorry - have I commented on the wrong thread? I’m confused!
@mezgaski all I can say is that I feel and S knows exactly what he’s doing with these meds and I can’t help feeling other doctors are tinkering around about, sort of copying but without really knowing the timings that are required etc.
So Mr S has you take Hydroxy for 6-8 wks before you are allowed to try and he is very clear about this. I’ve known him be annoyed with people who try sooner because after all, they are jeopardising the success and also his own success rate I suppose.
The steroids are taken for 10 days each month from ovulation. If you get a negative FRER test at 10dpo you stop them but always stay on the Hydroxy. Progesterone is also taken from ovulation.
I know many who have had success on the steroids alone but many who have a lot and then need another drug added.

DaniMERL Thu 12-Sep-19 09:30:54

@mezgaski
PS - I did question why Mr S does not prescribe the Hydroxy from the outset because at that point I seemed to know a lot of women who had also had another loss on the steroids. He was clear that there were many drugs to take and he couldn’t just dish them out willy nilly. So although I had to go through another loss, I do believe that he needs to try the steroids first as it’s never good to take drugs just for the sake of it.
And I cannot stress enough - the success of the plan is based heavily on taking the steroids from ovulation and NO LATER, despite what other doctors suggest. If you do opt to take them later under his care, you are not really following his plan at all, which seems pretty pointless to me.
I don’t mean to sound pushy about him, I’m not on commission! It’s just that I have seen him have success and change lives too many times to not believe.

MrsMargot Thu 12-Sep-19 09:55:31

Ah we have a new one! 😍 thank you @Chickjen for setting up! I replied to the previous thread this morning so I am adding it here again!

@zoe16 I am so sorry... rubbish news... yes definitely let off steam. We are here for you. ❤️
In terms of my GP I am really hoping he can do this. I called the practice this morning and they were very apologetic. (I was 😤). I am seeing the GP next Friday.

@*@Chickjen* I really hope they can expedite it. I was waiting 4 months for the wrong referral!! I have to say the doc I saw there was very understanding and she reviewed my history anyway. She said that I definitely need specialist care (no shit Sherlock) and that she will send a letter to recommend I go to the miscarriage clinic ASAP. By the way, I asked about any blood tests they could do. They did a repeat APS panel which I guess it is something. I wanted an NK panel and the Thrombophelia. She said that the miscarriage clinic does Thrombophelia and that they do not believe in NK. Not only that, she let slip that a certain doctor pushes them too much and it is absolutely wrong because there is no medical evidence. I kept my mouth shut 🤐. What would I say?! That I am due to see this certain doctor at the end of the month and that hundreds of women are evidence?! And yes of course I am going. No doubt about that.

@mezgaski Welcome! I know nothing about hydroxy (yet) but there are many knowledgeable ladies in here!

KittyKatSmile Thu 12-Sep-19 11:02:05

I would echo what @DaniMERL says RE the steroids at ovulation. I was really struggling to get pregnant on the steroids (some doctors believe these are linked) and was getting really bad side effects when I came off them every month so I stopped for a month (which he does advocate anyway after a while), got pregnant immediately, took the steroids from BFP and then lost the baby. I didn't stay with him for my current pregnancy but that was partly because my ivf clinic also largely follows his protocol without having to pay twice.

DaniMERL Thu 12-Sep-19 11:08:07

@KittyKatSmile thanks.
Don’t beat yourself up though, there’s no saying what would have happened whether you were on the steroids or not. I lost the one on the steroids too, despite taking them on time.
And with this pregnancy My dates were all wrong because of a chemical pregnancy so I definitely didn’t when ovulate when I thought - the9dpo FRER was way too dark! It’s lucky we even tried that early in the month and I must have started then steroids about 4 days late. Hopefully the Hydroxy did the trick x

kdd1980 Thu 12-Sep-19 12:25:34

Ahhh here you are! Thanks for the new thread @Chickjen

Zest11 Thu 12-Sep-19 15:48:28

Dr S sounds amazing...Thank you all for your stories.

A question...how does his treatment work on the NHS? My gp is happy to put in an individual funding request as he is out of area for me but I have to explain what he does that others can't do in my area. hmm

To be honest...I'm not expecting the request to be accepted but I will try before paying the sickening amount of money for private care!

DaniMERL Thu 12-Sep-19 16:24:10

I believe the wait is longer and he can’t offer all of the drugs - no intralipids (not entirely convinced by them anyway). Not sure about Hydroxy etc.
And I don’t think you can ‘upgrade’ and just pay for those things. If you see what I mean?
Others may know more x

Zest11 Thu 12-Sep-19 17:02:09

@KittyKatSmile Hello there my dear! I hope you are keeping well! So lovely to see someone familiar here. How is everything going?

@DaniMERL thank you for your reply, yes I know about not being able to "upgrade." My current IVF clinic don't allow that either...so annoying! To be honest...intrapalids fill me with overwhelming fear though. It sounds like Dr S worked wonders for you?? grin

Is anyone able to give a brief overview of his different treatment plans and how he chooses which plan you go on after having the tests? I am also terrified everything will come back clear (unexplained infertility here!) and he won't be able to do anything! hmm

Wewin Thu 12-Sep-19 18:52:36

Hi ladies,

Glad to hear all is going well. I’m 13dpo and got a fainter on a FRER yesterday but today bfn. I was so disappointed! My DH agreed he could see a very faint line too on yesterday’s test (I have a pic). Why did it disappear? I’m hoping it was weaker urine or something.

I’m beside myself as have been nauseas since 8dpo on and off. But maybe it’s the side effects of the prednisone and progesterone. Feeling really irritable too and feel like AF will start any moment. I don’t know if it’s my hormones or just the stress of this journey but I’ve been in tears quite a bit these past few days. Little things are getting to me and making me cry. Stuff that normally wouldn’t get to me. I do hope it’s a pregnancy symptom and not pmt.

So I’m in limbo but wanted to check in... ;((hugs)))

DaniMERL Thu 12-Sep-19 19:20:04

Oh @Wewin sorry to hear sad
Really hope it’s not the case and it works out but it could be a chemical pregnancy. In March I had a line at 9dpo. It got darker each day upto 12dpo when I had my intralipids. The next day it faded and then disappeared and my period ended up being only 3 days late. It was a complete roller coaster of a week (and it was my birthday). If it wasn’t for the treatment I would never have tested that early and would never have got any positive.
However, I then got my next positive only 3 weeks later and this one has stuck so do keep your spirits up. I wish I’d known what was ahead at the time though as I was about to throw the towel in. Extra kick in the teeth paying out for wasted intralipids too.
Best wishes to you xx

Wewin Thu 12-Sep-19 21:18:56

Thanks @DaniMERL sorry to hear about that but so happy your pregnant now. I’ve had 3 chemicals so yes maybe it’s another. Funny you should mention about throwing in the towel, as that’s exactly what we’re considering doing. Probably won’t though, I’m just upset (again). I suffer from chronic depression long-term and I need to get back on my antidepressants. So ttc and antidepressants are not a good mix. That’s why this was supposed to be our last ttc cycle (medicated this time). So disappointed it doesn’t seem to be working out. I’m not a very patient person.

I’ll be okay though, it’s just crazy making these chemicals and failed cycles xx

DaniMERL Thu 12-Sep-19 21:37:24

@Wewin I’m sorry to hear. It must be very hard for you.
Sorry, I can’t recall - are you with Mr S? Have you been back to see him? Has he changed the programme since you suffering these CPs?

Wewin Thu 12-Sep-19 21:48:56

No I’m not with Mr S. I’m under the RMC in Northern Ireland and they’ve been very slow getting to me. I’m going to have to chase them for a review appointment. I wasn’t going to, we were just going to quit. But we just can’t. I’m 43 as well so dealing with egg quality issues too and only started ubiquinol and DHEA 2 cycles ago so need to give it a bit more time I guess. Disheartening though.

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