Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

Thank you all for the advice. I’ve decided to just got for it, book the initial consultation and go from there. I have nothing to lose (except all my money of course!) and at least I’ll know I’ve tried everything. I’ve been feeling so hopeless lately so this has given me a little boost, and I’m wondering if my Tommy’s appointments being cancelled/delayed so much was actually a blessing in disguise.

Had my scan today with Dr S and all’s well, ❤️

So sorry for your losses @Tinpo,
Dr S is expensive but for me finding out what was wrong for me was such a relief.
My initial tests were £2500 but you know absolutely everything has been checked,
Additional treatment can vary depending on your personal plan but for me worth every penny.
I’m currently 11wks, this is the first pregnancy I’ve seen a heartbeat and the furthest I’ve got with any pregnancy, so for me totally worth it.

Take care everyone xxx

@LRL12 that is lovely news!

@Tinpo I am sorry to hear about your previous miscarriages. Re money part of his treatment involve intrallipids and extra scans...he doesn't offer intrallipids for public patients from what I have read so it might be worth asking about he possibility for alternative cheaper meds to them eg steroids/ hydroxy...and also re public scans...just an idea if you are stuck :)...

@Sophfr17 fingers crossed for you x

@VenusStarr I felt and feel the exact same. I think it's a build up to the appointment and doing something positive but once it's over I now know we have to start trying again...and the fear of it happening again is terrifying ...I was the same I only had a few questions...I think that's good because he only gave 30 mins 😂 also re retained tissue would you get two hcg blood tests? I did after my d and c because I was still bleeding and testing positive 3 weeks later and once I saw my levels were going down it reassured me ..it just took longer..

@everhopeful35 did you have your appointment? I hope it went ok and he was able to reassure you somewhat.

@Daffodil21 I think 20mg is a standard enough dose for alot of places that offer it from what I have read. I was given 20mg with my last MC - it wasnt with Dr S though. He seems to offer a slightly higher amount pre COVID and also gives just after ovulation whereas some other places give it after BFP.

Thank you all for your help.

@LookingforAnswers86 I actually didn't start taking it until a week after my BFP because that's the earliest I managed to get an appointment. Do you think that's too late if that was the problem?

@Tinpo I'm so sorry for you losses. I agree with the other ladies that the cost is a lot but so far I feel like I'm in good hands. Dr S can be a little abrupt bordering on arrogant (but then most specialists I've seen are - particularly the men!), and I guess it still remains to be seen whether I will be a success story, but I do find him incredibly knowledgeable about miscarriage.

@LRL12 Congrats on another great scan!!

@Sophfr17 I hope everything goes well with your pregnancy and this is your 🌈

@LookingforAnswers86 I had my appointment with Dr S yesterday and it went well. The Humira has taken my TNF Alpha level down from 57 to 27!! I was over the moon. He has advised we give IVF a wide berth and that my embryo abnormalities might just be bad luck or a reaction to the protocol, and we may have much better luck with a more natural approach. So I started hydroxy today and I'm on the super ovulation plan, starting tomorrow 😬 Feeling good to have a new plan of action, though nervous too.

Hello everyone,
@LRL12 such amazing news thar everything is going well!

@Tinpo I am so sorry for all your losses but glad you decided to speak here and go for the appointment with Dr S. I was initially very doubtful because of the amount of money, but then I thought if he is the best, then it's totally worth it. I also spent 3000 on tests and first bunch of meds. Then I spent 300 quid for intralipids for ovulation and I had to have a liver function test which cost 70 quid. The costs really piles up but it is manageable. I put it on the credit card and then pay a little bit off each month. So it is not too bad at all. And I feel very reassured compared to when I was ttc on my own with no help and resources. I hope you find the answers you need. The nhs is taking for ever now, so I think it is a good call to go private.
@VenusStarr glad the appointment went well today. When is your follow up?

@Everhopeful35 it's great that the TNF alpha has gone down! I am glad you have a plant of action now. Good luck with your super ovulation this month! X

Hello everyone, I've not been on for a few months but popped back on to find out how everyone is getting on. Congrats to all those who are pregnant and scans all looking good - you have all given me a bit of hope!

@Eeviee I was so sorry to read of your recent miscarriage. I remember chatting to you at the start of the year, praying we both get our happy ending though it feels so far away at the moment.

@Tinpo make sure you have a high limit if you do go for a credit card, the costs at CRP sure add up....I was over £3000 for my first visit (tests, meds and a scan to look at my ovaries), couple of hundred whenever you need to speak to dr s, £300 for intralipids....eek! I just make sure my husband is out the room when I go to pay haha!

Well I have just finished my second cycle of ivf and had a fresh transfer with a positive test last week. Unfortunately I started bleeding really heavily yesterday so looks like a chemical pregnancy for me. I was on fragmin, hydroxy, and all the usual meds Dr S prescribes and Ive just stopped taking them as I feel so fed up of pumping my body full of drugs. We even made a 14 hour round trip for pre-transfer intralipids as Dr S said he wouldn't treat me unless I had these at his clinic as he doesn't allow them to be done elsewhere.

I just cant believe its failed again, a perfect embryo and following the treatment plan to the letter and still it fails. Its so disheartening!

Does anyone have any success stories of ivf on Dr S' plan? Xx

@Luckyducky2 so sorry to hear :( I am not familiar with your story - did you do general IVF or PGS testing?

@Everhopeful35 good news that your levels have gone down so much :) and that you have a new plan of action!

I got my results today from my last d and c and the results came back normal. I knew I was going to be upset either way. Surprisingly the public hospital suggested I needed to get my NK cells tested, I think I haven't been giving them enough credit! Dr S please fix me 🤞😬

@LookingforAnswers86 thanks lovely. Feel like I've been following this board forever but we gave things a break over the summer with covid and generally needing a rest. I've had 6 losses over the past 3 years (2 missed miscarriages at 11 weeks, 1 ectopic and 3 chemicals) but this was my 1st loss under Dr S. Unfortunately am now battling my age aswell as am 41.

We didn't do PGS testing really just because of financial situation and we also have a little 3 year old boy so no known genetic issues in our families, but ive read quite a lot of conflicting advice about the PGS testing? Have you done it yourself?

Sorry to hear you have had a recent d&c, its never easy and so hard to stay positive isn't it. Let's hope Dr S works his magic!! Xx

@Everhopeful35 great news about your tnf alpha. I wonder why he re tested you but said no to me? I think my level was 35. I'm glad Mr S gave you some answers and hope, good luck with SO, I'm thinking about it too.
Great news @LRL12, what was your protocol?

@Tinpo as the others said, it's v expensive, but money we'll spent to know an expert is taking you seriously. Best of luck.

@Eeviee so sorry to hear about your news. So heartbreaking. There's not much anyone can say x

@Luckyducky2 I don’t know anything about IVF I’m afraid but given you do appear to get pregnant fairly easily, do you definitely need it? I’m also older and also have a little boy (he’s 2) but then struggled with multiple miscarriages after that (they’ve all been this year).

I’m wondering if something else like superovulation might be better or at least a (cheaper/simpler) alternative to try? Dr S suggested it for me (I’m 39 soon plus have low ovarian reserve) and it worked first time for us (although I’m still only 7 weeks so not past the point of previous miscarriages and spend every day worrying it’s the day I will lose them...).

Also, can he retest your bloods because maybe you need pred also if you’re not on it? He is still prescribing and in higher doses than others have said (but my levels are off the scale and the deal is I’m shielding/we live a very locked down life so risks are lower).

Anyway it’s just an idea in case you haven’t heard or thought about it (I had not until he raised it) xx

@Whyisthistakingsolong It is really odd that he's not retesting you 🤔 Did he say why? Even if he can't give you another course of Humira, it'd be nice for you to know what your levels are after one course (I.e. whether it's made a difference).

Quick question to ladies on superovulation - is it a fairly straightforward process or is there a chance that you can be overstimulated and produce too many follicles/eggs, risking them cancelling it/telling you not to try that month? I'm just slightly nervous as IVF drugs seem to have quite a strong effect on me and I've always produced a lot of eggs (none of them good eggs, though, annoyingly 🤣)

@Everhopeful35 yes there is that chance but I think for that reason he starts with a standard letrozole dose and then sees how it goes (eg if you need to reduce or increase the dose thereafter) / you time your trigger shot according to follicle growth so unless you have a crazy reaction to it, that should be avoidable.

We found that I’d responded well, almost too well, at my scan so timed the trigger shot accordingly (when only two follicles max would be big enough by then; I potentially had 4-5 big ones if we’d left it longer and a smaller one that had no chance). Although both took in my case, they did say they haven’t had superovulation twins at the clinic in ages so it’s unusual (the chance on letrozole is something like 3.5% and far lower than clomid). But what this will give you if you don’t have such good quality eggs is a better shot in terms of numbers as you’ll be producing more (and I think I read it may even improve the quality by giving them a “boost”, but not sure how much that’s backed up scientifically)

I found it really simple and straightforward (and no side effects) but it worked first time for us - you should be prepared for 3-4 cycles as that’s what they told me to prepare for on a standard/cautious basis. But 3-4 months isn’t really long at all if it works. I would recommend a try at least you never know?! x

@Everhopeful35 also, I don’t know much about IVF but pretty sure the drugs (Gonadotrophins??) are much stronger than those used for superovulation (letrozole at CRP clinic) because they are designed for different purposes (superovulation is giving you a small boost or helping ovulation happen if you don’t ovulate, not designed for collecting lots of eggs) so you wouldn’t be producing tonnes and tonnes I don’t think x

@Rebecca9876 This is so helpful, thank you! When you're in the consultation (and I think one of the other girls said this the other day) your mind just goes blank sometimes, then you end up coming out with a million unanswered questions. It's interesting that letrozole May be able to boost egg quality. Here's hoping. And as you say, 3-4 cycles doesn't seem long. It took me four months to get pregnant when we last tried naturally (that was a chemical), so it's not like we're losing anything, and it may well speed things up. How are you feeling at the moment? Sorry - I sometimes lose track on this thread - but did you say you were suffering from a SCH? If so, how are things now? x

@Everhopeful35 haha I know exactly what you mean about the blank mind! And yes it sounds like nothing lost and potentially everything to be gained? I wish you so much luck if you go down that route.

Oh thank you for asking - I’m resting as much as I can and at the last scan the SCH had decreased so that’s good and hopefully will continue, but I live in daily fear I will lose one or both, esp as having had missed miscarriages before I cannot trust my body and I’m not yet past the points of other losses yet. I’m sure you will understand. Recurrent miscarriage robs you of being able to enjoy pregnancy but I’m just praying it works out this time. And for all of us! X

Congratulations @LR12. I missed all these messages as I haven't had an emails from mumsnet since the 1st. Just logged in because I remember your scan.

@tinpo welcome but sorry to see you here. My first pregnancy was a mmc late loss at 19w and then I've had two early anueploid losses. I'm currently 12 weeks pregnant and I felt Dr S took me seriously. He was very direct and said my first loss was a 'problem' and without treatment I would keep having issues. I am on hydroxychloroquine and took prednisone but didn't get on with it so switched to intralipids. I've added up everything (including scans and consultations once pregnant) and its about 7.5k so far. I'm still not out my danger zone but its looking promising.

Nice to hear about new pregnancies and sorry for new losses. Take care everyone ♥️

@rebecca9876 you are so right about the super ovulation, thats actually how I had my little boy as I have polycystic ovaries and don't always ovulate. I didnt do it through Dr S but through my ACS clinic at the local hospital and it took 5 months for it to work. Ive managed to get pregnant a couple more times with Letrozole but its been taking longer and longer and i've started doing ivf now as time is really of the essence! Dr S said sometimes after women have had a child that is when the immune problems kick in, that seems to be what is happening with me? I think I'll try another embryo transfer after Christmas and see how that goes (I'm realistic and know with my age the embryos won't all be perfect). We had an ectopic last Christmas which was frightening and pretty devastating, so I've decided its time to stop and have a rest and see how things are in the new year after a good rest and try to enjoy Christmas with my family (whatever Christmas Is going to be this year!).

Are you expecting twins? How exciting for you (I know you will be terrified aswell - its so unfair that we are all robbed of the happy innocence others feel in pregnancy), i hope you are keeping well xx

@Daffodil21 it could be. I am not sure. Some think its time enough from a positive test but Dr S firmly believes you need to take the medication before then.

@Luckyducky2 nope not ivf but 4 mcs. Maybe this time was down to bad luck as opposed to medication? Although I am not how reassuring that is...

Happy weekend everyone! A glass of wine is defo calling me 😊🍷

@LookingforAnswers86 that is actually comforting, a little bad luck i could take....maybe next time??

Enjoy your wine, we also have a bottle of red open and my goodness after this past week I think we have earned it....cheers! Xx

@KtAgs Great news on your scan! Wishing you a healthy pregnancy 💕
Sorry for those who have had losses, it's so heartbreaking :(

I've been feeling like it's time to give up. Anyone else feeling this way? I've been with Dr S a year now and this is my 9th SO cycle...when is it time to stop? 😑

Thanks @Luckyducky2 yes both excited and terrified. Just waiting and hoping...

I think taking a break is a really sensible and brilliant idea. We did in the summer - just took break, had a holiday and didn’t try - and it was wonderful. I felt like myself again for the first time in ages. I hope you find the same, whatever kind of Christmas we get! xx

@Everhopeful35 yes I'm surprised he won't re test me. However I just massively messed up my 2nd humira injection and only about half (I think) went in . I don't even know what I did wrong but there was lots of run off when I took the needle out. So that'll probably need I have to do re resting plus might need another round.. My TNF Alpha level was 34, (normal is 30) maybe the first injection would be enough. I'm so mad at myself!