TTC or pregnancy on prednisolone or similar part 11

[Buzzybee123]

This is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

So sorry about your news Sue. There's nothing I can say to make it easier. The steroids need to be dropped by one tablet every three days. So if you are on 4 at the moment drop down to 3 tomorrow for three days, then two etc etc. I have only just started to feel like myself again and I took the last tablet on 21st Sept. My only advice I'd to take each day at a time and try not to make any life changing decisions. Just let you and your body get through this as going through a mc whilst on meds does make it worse I think. Big hugs to you xx

Sue simply gutted for you. Can't believe you are having to go through this again. Sending you loads of love x

I can't believe this; really sorry Sue this really should have worked out for you. I wonder will they give you any "answers" this time. Thinking of you and wishing you strength for the days ahead xx

Hi team I had a scan last week at 5+4, just to make sure sac in the right place but too early for HB, so 8 weeks will be the critical one, and by that point last time it was all going wrong though don't tend to actually MC until 9-10 weeks. I feel so much for what sue must be going through today and for the last week of being in limbo, that's exactly what happened to me last time and it is awful.
I have only just realised very late in the day that today was my due date for the baby I lost at my 3rd MC in March. I have been so busy that I have literally not had a minute to think about it. Perhaps that's a good thing. Following my little tradition I have bought a charity gift in her honour. I do feel sad that it can almost slip by unnoticed, my first EDD was such a massively emotional day, now I've got to 4MC I'm a bit hardened to it

Sue, so sorry it has happened again. I understand the temptation to stop. It's very hard. You never know with an embryo that didn't grow at all (presuming it wasnt a proper HB they saw last week) it might just be 'one of those things' awful as that is. But it might mean it's not the nk cells.

Tapering is by 5mg every 3 days.

Good luck Teamdozie, I'm sure that feels like a long wait.

sue I'm so sorry :( Big hugs, take care of yourself.

Crossed posts with you last night baking. Sorry about the due date. It's weird isn't it as at first they are so significant but then weirdly you find yourself forgetting and remembering. I guess it's because when miscarriages are a shock the due date is much clearer in your head as you are not expecting to miscarry. Once you know you might have to expect one the due date becomes less of a thing as you don't always expect to get there. Hope the wait for the next scan is not too long.

Ari, how is dd?

Sue, thinking of you x

team, hope things are calmer today and that your spotting has subsided.

Luna hope you are feeling OK.

bakingtins I was moved to read that you buy a charity gift each time to honour a due date. Since my first mc, when every missed milestone hurt like hell, I've been relentless about 'getting on with things' and not marking the EDDs - maybe a mistake. Really hope this baby is the take-home baby for you.

Had the results of the first-line NK cells testing yesterday - all negative. I now need to go to Wimpole Street on the 21st to get the HS11 cytotoxicity test done. Am feeling bizarrely disappointed that the tests haven't turned up a problem so far. Did anyone else test negative for the first-line tests and then get a positive on the HS11?

DD is much the same, thanks for asking free. Being monitored closely to try to spot first signs of kidney trouble if and when it happens.

Baking I know how you feel! That's a lovely gesture to buy a little gift! I have decided that when we have a baby I will get a tattoo to remember all of them! I have one already to remember Nathanael but I want one more for everyone else!! How do you feel about this little one?

Free how have you been? Thanks for the support! I'm keeping everything crossed!!

Village thank you spotting has slowed! Louise at Dr S's told me that it might be the cyclogest aggravating my cervix! So I've had to go ..... The other way!! Yuk! But hoping that helps!! Also regarding your tests mine came back negative first time and the second round came back positive! Hope you get the answers soon!!

Xx

Team that's great news about the spotting. Louise is very helpful I find! Interesting to hear that you came back negative on the first-line tests too. I'm finding it hard to believe, after four mmcs, that I don't have an underlying pathology - we'll see. Take it easy, hope you are all clear in the next day or two.

Village it's so disheartening when you get them back and they say they are negative! But when we went back two weeks later I felt like crying when he told me what was wrong! I've had 5 mmc including a loss at 20wks! This is baby no1 on his protocol so I'm keeping everything crossed!
I found it refreshing how Dr S is so to the point with things! And Louise has been amazing with me! Always there to give advice!

I hope you get the answers that you want!
Xx

Team have you been diagnosed with low or high NK cell levels? I'm guessing you're on the lower pred dose? Sorry if you've already posted about this earlier! Yes, the patient care at Mr S's clinic is already infinitely better than any I've met with so far - it helps so much to have just one humane responsive human being (aka Louise!) on the other end of the phone when you need an answer to something . I'm so hoping all goes well for you, believe it will!

Louise is fabulous isn't she. Just so nice to be listened to and taken seriously and have people there who know all this stuff!

Village I have been diagnosed with Very high NK cells and they do not respond to the treatments. The only treatment they responded to significantly was the IVIG and the higher dosage of that too!
But due to the cost implication Dr S recommended we go with a whole concoction of things so I'm on the high steroids, high intralipids, high cyclogest high everything! Lol! When I walk my husband says I rattle!!

Free Louise is a godsend! She has such a relaxing personality you can't help but stay calm!

Xx

Crikey team, sounds as if you are a walking pharmacy! I just assumed since you were negative for the first-line tests that you'd have a milder form of NK cells - but am guessing now it doesn't work that way! Hmmm, am learning a lot...

Haha yup! I must admit when they came back negative I did worry that so would the second lot. But Dr S did say to me that if the first ones come back negative it doesn't mean there is no problem! And it turns out its a biggish one! But so far it's all working! I'm staying positive

Thanks for all the advice on tapering. I was told the miscarriage isn't due to killer cells as I was on everything for them but either a chromosome problem or the food poisoning I got two weeks ago. The baby stopped developing at the same time I got the food poisoning so seems like more than a coincidence to me. I am hoping to have a d&c and get it tested even though it might be too small.

I posted a version of this on the other thread - sorry its me me me but I am so confused on what to do.

Thinking of stopping it and all the drugs for a while partly due to cost and also because I want my life back to normal.
I am so fed up with the whole merry go round of life being put on hold and I don't know how much more I can take.

Yes I might conceive quickly once we try but what's the point if it is always doomed to fail? I seriously think that the majority of my miscarriages are down to aging eggs at the age of 41. I could keep trying for the next 2 years, have another 9 miscarriages and never find the elusive egg. I am also concerned that it's not good for my health with surpressing my immune system for so long. Its different if you go on shehatas plan and conceive with a successful pregnancy in a few months but what about us old timers? Surely it can't be good to be on the drugs for so long? I keep thinking of snoopy who was diagnosed with breast cancer after being on the drugs for a while. My DH said he is scared that he will lose me and end up with two kids on his own.

I also then wonder if ivf would work for me again or not but then I think of duggs who had cgh testing and yet it still failed. I could spend 7k on an ivf cycle and it will either be cancelled again due to poor response or I could miscarry or worse still get to 20 weeks and there be another problem. We also don't have the money to gamble when the odds are so stacked against us.

DH is worried that we will end up having a baby but it will be severely disabled. He thinks we are fated to not have a healthy baby now.

So my question to you ladies is, do you seriously think I have any kind of chance of conceiving a healthy baby naturally after 9 losses at my age or should I give up and try to appreciate what I do have? Should I go cold turkey and stop all the meds and acupuncture and try naturally or do I spend our savings on one last go of ivf?? I really don't know what to do.

It's so hard to know what to do Sue and also to predict what we would do in the same position. But you asked what we would do so I am trying to imagine.

Personally I would stop. But having had recurrent miscarriages before I had a child I was wondering if I would ever be able to become a mum and have a child and now I have I am so grateful for that. I think if I had/go on to have several miscarriages after DS I wouldn't want to risk my health again that often if I am honest. But like I said I can't yet relate to the agony of trying unsuccessfully for that second or third child and I know there are plenty of people on here who are going through that and of course find it just as traumatic and awful as when I had recurrent miscarriages before having DS. Maybe they are better placed than me to tell you what they would do, but of course only you can decide. A tough decision to make.

If I have to stick at one child I hope I will get on a enjoy our life together and really embrace all the things we can do together. I have such close friends who would love the opportunity to have just one child I feel that I owe them that as well as owe it to myself.

I hope I haven't upset anyone by saying all this. I do realise that having fertility problems and miscarriages is awful no matter how many children you already have. Oh and I do want to try for another one at some point so who knows what I feel if/when I'm going through problems again!

belly are you doing another round of ivf at zita west? Did they say they would try a different protocol or the same one? I had an email yesterday (great timing) saying that my ivf cycle has been booked for December. Dr n said in my initial appt in July that if I wasn't pregnant by October they would put me on the ivf programme. It was just a coincidence that one of the admin staff sent the booking in email the same day as I had my scan.

free thanks for the honest answer. It helps me to know I am not mad for wanting to stop. I don't want my dds life to be tinged with sadness and hospital appointments and that I miss out on her growing up. I just feel I have come so far that its so hard to throw the towel in especially as the next time could be the lucky one. Really confused!

Sue I think it's just too soon to decide, you're right in the middle of it. Sometimes I wished something would happen to make the decision for us - it almost did as dh was prescribed drugs that would have reduced his sperm count. I've been told you just know when it's time to stop, but I'm not sure that's true. I read about Amanda Redman the actress having nine mcs and two ectopic pgs (she has one dc already) but having to stops as she became menopausal.

I suppose how you cope after each loss is an indicator of what you can take. I did not cope well and I only had four, but I can't tell when I'd have stopped. I think while there is still something "new" to try, it's very hard to stop. If I were only 41 I wouldn't stop (personally), in fact if I were 41 we'd probably be trying for dc3!

Take some time, postpone your decision for a month and it might be clearer what the right thing to do is. It's awful to stop, and it's awful to keep going.

I knew Iggi would have some good advice! She's right, it's still so raw and still ongoing. And you are still comparatively young at 41, people do have children a lot later. Take some time to see how you feel about it. I feel a bit bad about what I posted as tbh I have no friggin idea what I would do either. I was just typing as I thought and it was just one train of thought.

TBH sue having gone through 4 yrs of this and 6 losses I am only aiming for one child. I would love 2 but I would be so grateful to experience what it feels like to be a mother to give birth, to watch my husband and my family and my friends all responding to my baby I dream of this moment. But I don't know if I ever will be lucky enough to have it . long gone are my dreams of 2. I couldn't do it. Saying all this, I am speaking with experience - if my second mc at 12 wks hadn't been a trisomy I am sure I'd have a 2 year old now and just be realising the agony of RM for my second and be almost as determined as I am now. Well I am on the edge of determination and totally giving up am so exhausted. We have sold our house, I left my job ... Not sure how much more our relationship can take so much longer and I will be left with my 2 cats and nowt much else. I think you need to give dr N a chance and then move onto natural conception without the drugs only on bfp. Dr ndwuke protocol is drugs on bfp. This pregnancy I had I didn't take pred until bfp ( no success story but I got a hb so it does show with very high nk cells can implant) x

Sorry meant dr queenby protocol drugs on bfp. You can try to get on with life and if and when you conceive again throw the drugs at it!