TTC or pregnancy on prednisolone or similar part 13

[VillageMum]

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!

...will have to come back one day when we can have a good old drink or three.

Hi everyone - its great to hear all the positive news coming out of this thread.

It didn't work out for me unfortunately on Mr Shehata's plan of intralipids, steroids (40mg) and clexane. The outcome was very similar to my previous miscarriages (with no meds) - that there was no heart beat at 6 weeks and early embryonic demise.

Given this outcome I now feel that I a back to square one. Just wondering if there are others out there for whom the plan did not work and whether they were successful in the future?

Mr S - didn't given much advice - and said he doesn't know why it didn't work !! I will be getting the products of conception tested so at least that can rule out any chromosomonal issues.

Hi triple.. Sorry to hear this. Yes there are quite a few of us who the treatment plan from dr s didn't work for. I had 3 mc before seeing him and 3 more over the following 2 yrs on his plan and there are others. It does seem it either works pretty quickly or not at all...we still aren't sure what exactly it is that works. I'm almost 30 wks now but is my 7th pregnancy and almost 5 yrs since starting to TTC. Sometimes it is Chromosonal but tbh it is probably Chromosonal a lot of the time for a lot of us. I hope things work out. Mine- and others main point, it is the expectation management side of things.... I wish it wasn't painted as such a miracle solution for all... Maybe a bit more of a balanced view from the outset would help. Hopefully you will have the strength to try again ....x

Thanks duggs - yes I guess I mostly read success stories and I felt I had done almost everything to address the issue.

Wow 30wks is amazing and I remember this time you didn't even start the steroids until 5 weeks right? Were you still under Dr S's care? For your 3 mcs under his care, did you not get the genetic testing done? Did he change your plan at all?

He doesn't really tailor the plan to individuals - he has pre-printed plans and so for me if the genetic testing rules out chromosomonal issues - then likely I will move on from him.

triple So sorry to hear of your MC, it's horrible when you're so confident with a plan and it doesn't work out. I'll second what duggs says - Mr S's treatment didn't work for me either, 2 MCs under his care and 7 in total. My issue ended up being something he doesn't test or treat for - I found out by pushing him to test for it, but even with the results he wasn't interested. In my case I am 100% DQa match with my OH, which basically means we are so genetically similar that my body sees any embryo with his DNA in as 'almost me', and treats it as a bit of me gone wrong (like a cancer cell) - and kills it off. Every time, no matter how much medication, and the more miscarriages you have the more fierce the immune response. With my immune system also being very aggressive anyway, we didn't stand a chance.

Anyway, just wanted to say that I agree with duggs; I suspect a lot of MCs are chromosomal, but if that's not the case there are other things (not just DQa matching) that cause MCs that Mr S either doesn't test for, or doesn't believe is a problem if you can persuade him to test. There are other specialists out there who do look at other problems (although it does often mean more ££), so take heart, all is not lost if Mr S's plan doesn't work for you.

/waves to everyone

Thanks Ari - maybe it is a case of a missing piece of the puzzle which I still haven't found. I guess due to age, chromosomonal defects are quite likely the cause. Given the similar pattern of the mcs, I am hoping I can find a reason. I understand dr g does test for dq alpha and I may pursue that as the next stage....more ££...

Hope you are well. I recall when I joined this thread you had your bfp with twins! What kind of immune treatment did you do, especially in light of dq alpha match?

Well to be honest, I was on the works (except IVIG); prednisolone alongside dexamethasone, neupogen injections every day, intralipids every 2 weeks starting 2 weeks before ET, John Bowen's immune herbs (sarei-to, which also helped calm my DD's immune system during her attack of HSP, which is where the immune system attacks her own body), celebrex (an anti-inflammatory), as well as curcumin, high dose omega3, resveratrol, co-Q10, and no doubt other bits I've forgotten. As well of course as clexane, baby aspirin, progesterone and oestrogen. But as well as all that, I actually ended up doing double donor - basically completely removing the effect of my OH's DNA. I did DE the cycle before, with my OH's wrigglies, and although I got a BFP my body killed it off.

I have no idea what worked to be honest - but I know I threw everything possible at it to calm my immune system right down. My immune system is so damned aggressive, just prednisolone, intralipids and hydroxy (which I took for a very long time under Mr S) would never work for me.

Lots of luck!

Hi triple, sorry to hear you're going through it too. I've been treated by Mr S and have one little boy and am currently 19 weeks pregnant on the same treatment. I have had two miscarriages when on the treatment but one was definitely confirmed as chromosomal (saw a heartbeat at 7 weeks, gone by 8, 'products' tested after ERPC) and I strongly suspect the other was too (by 8 weeks only had a yolk sac). Unfortunately miscarriages do happen for so many reasons.

I would say that so many on us here have had successes on immune treatment that there's every reason to feel optimistic. I know it's hard when you've just had an

Hi triple, sorry to hear you're going through it too. I've been treated by Mr S and have one little boy and am currently 19 weeks pregnant on the same treatment. I have had two miscarriages when on the treatment but one was definitely confirmed as chromosomal (saw a heartbeat at 7 weeks, gone by 8, 'products' tested after ERPC) and I strongly suspect the other was too (by 8 weeks only had a yolk sac). Unfortunately miscarriages do happen for so many reasons.

I would say that so many on us here have had successes on immune treatment that there's every reason to feel optimistic. I know it's hard when you've just had another one but I personally would give one line of treatment a real try before you start trying other things and it getting confusing. Awful as it is, and I know as I've been there, one miscarriage on treatment might just be one of those 'everyday' miscarriages.

I have just been reading through all of the messages on this thread and have found it so inspiring. I went for my first appointment with Dr Shehata yesterday after six miscarriages and I am feeling more hopeful than I have done in a while. I have a little boy who is two and I just hope that Dr Shehata will be able to help us to have a little brother or sister for him. I have always been a positive person but it is hard when the same thing keeps happening. Three of my miscarriages were before my son and I have had three since. Dr Shehata thinks I might have an immune problem but he is going to wait and see what the tests say. I go back at the start of September. He has told us to hold off on ttc until then which is a little scary as I have just turned 38 and I am worried that time is running out, but we will take his advice. I think I am concentrate on eating well and losing a bit of weight that I have put on from the miscarriages. I would be so happy to have a plan to follow as I am running out of steam a little on my own. In the meantime, I am really glad I found this thread so thank you!

Hi Hope! You've come to right place. Goodness, don't feel old at 38. I was almost 38 when I had my first (on Mr S' treatment too) and will be 40 if (when!) my current pregnancy hopefully result in number 2. And I'm not the oldest on this treatment by a long stretch. I hope you have a diagnosis and treatment and that it all goes swimmingly. There are so many people here who have had babies through treatment for immune issues. Most of the ones who have had babies already though have disappeared and are busy with their lives with children! I'm lingering as thread starter and also on the treatment again for what I hope will e our second baby.

Thanks Free! It is easy to get paranoid but I am feeling more positive after reading the messages on this thread. I think just having a plan to follow makes it easier as I am pretty exhausted by the whole thing.
You must be so happy to be having your second little one. I guess the anxiety never completely goes away but I am sure it will be fine now and that you don't need to worry. I worry that it makes me too protective of my son sometimes and so I really try not to be. I am looking forward to a time that I can get past all of this and just get on with being a Mummy.

Welcome hopender and all the best for the treatment. This is a great thread with lots of excellent support.

Thanks freelance - before I felt the same that you need to give a treatment a chance and so I should stick with Dr S but I also feel that perhaps I don't yet have a full picture of any other issues and therefore best we start again I would like to have a full immunes work up. Let's see how I feel a couple of weeks down the line.

Thanks Triplespin. I have been so down in the dumps and I know having a plan will make all of the difference. Not sure what I'll do if all of the tests come back clear but I guess I'll cross that bridge if I come to it.

I'm so sorry it hasn't worked out for you yet but hopefully you will have better news soon. I still don't really understand why my little boy made it when all of my other pregnancies were miscarriages but these things do seem to happen a lot. I wasn't on any medication at all. Is there any way that you can see two doctors at once? Or do you prefer to stick with one person. Does Dr S want to try anything new with you? Sending lots of positive thoughts your way.

free how does it all work the second time round? will mr s just retest my nk cells? or will he do them all again?

Hi Cartoon. He didn't retest mine being that I was already very high and that treatment had already worked for me so we've just done exactly the same as last time. Did exactly the same for my pregnancy last autumn but that was confirmed as a chromosomal loss. Are you trying again - had forgotten?

How's Charlie - are you lurking and trying again too?

not yet free just thinking things over and wondering how much money we need in the pot first. Ds is only 7months. i also have very high nk cells and had a chromosomal mc on treatment before ds. i guess i might not need to have a re-test done then.

Ooh yes 7 months is still quite early, but I know people who try earlier :) if all goes well with this one there will be 2 1/2 years exactly between them.

Yes with Mr S I've done exactly the same as with DS figuring if it works once - great.

triple so sorry to hear about your mc. Really hope your investigations lead to a full picture for you and that you find a plan you're happy with.

hopender welcome. Don't feel old! You are YOUNG! I had my DS at nearly 32, then had miscarriages (unexplained) and finally managed to produce DD at 42 - and am now trying for number 3 under Mr S's care. I'll be 45 tomorrow! I also don't know how I managed to have my two children; I can only assume that NK cell levels fluctuate. I fall in the High NK cells category, but only just. When I fell pregnant with DD it just so happened that my immune system had completely crashed (I caught everything going) and I suspect that was enough to suppress my NK cell levels to a point where she could survive. Hang in there. You have time. I hope you get the answers you need soon!

Hi Village Mum! Thanks so much for your message. My friend's Mum was 45 when she had her and that was without Dr S behind her so I am sure you will have some good news soon! I think I just had a bit of a wobble when he said that Dr S wanted to check my FSH level as I hadn't really worried about that until now. I was wondering, if you don't mind me asking, if you take the steroids from ovulation or from the positive test? We go back to Dr S in a month and I'm slightly wondering what to expect. He did say that it was probably that I had an immune problem, partly because of my history and partly because of the fact that I had a changeable outcome to my pregnancies. In addition to the six miscarriages, and my little boy, I also lost another little boy when I was six months pregnant last year due to a chromosomal problem. I am never sure whether to call that a miscarriage or a stillbirth. But if there hadn't been the chromosomal problem, he would have survived. I wish I could make sense of it all sometimes. I do know that I am not going to give up trying yet though! Lots of luck to you for this month!

That's awful about the loss of your little boy at 6 months pregnant Hope. What a terrible loss. When did you find out about the chromosomal issues?

Mr S generally advises steroids from ovulation and then stopping after 10ish days if no bfp or increasing the dosage on bfp for the 'very high' and staying at 25mg for the 'high' levels.

I found out when I was about 16 weeks pregnant when I had a scan that there was a problem but we didn't lose him until I was 20 weeks pregnant. It is the hardest thing I have ever gone through. I'm still not sure if you can ever get past these things. He would have had a lot of challenges if he had lived but for me it hasn't stopped the sadness. My little boy is so physically able and I worried about how that would affect the little boy that we lost but he was very much wanted and loved.
We have had two miscarriages since then. I think the one thing that will help me to make sense of it all, other than time, would be if we were able to have another little one. I am feeling better day to day now than I did a few months ago, so that is something. It is strange how time can make the unbearable a little more bearable, well that has been the case for me at least. I see a lot of suffering in my job too so it reminds me of all of the things I have to be grateful for!
Thank you for letting me know about the steroids. Hopefully that is the answer. Do you know if your little one is a boy or a girl or will it be a surprise?

Really sorry, I've just realised that my last post wasn't the most positive one! I don't want to put anyone on a downer. We've all been through enough, but tricky to tell the story in an upbeat way. This thread has so many great stories on it though and it is really inspiring to be able to see how this treatment has worked out so well for so many people. Feeling very thankful for my little boy right now too! Sure there will be more positive stories to tell soon.

Just realised I wrote 20 weeks. I meant 24. Brain is obviously not working at all!

Hi hopender thanks for the encouragement! I'm so sorry that you've had to go through so much, including a stillbirth. I didn't read your post as negative at all. I think your instincts are right: managing to have a healthy child after several miscarriages is the most healing thing. I certainly found that with DD. She still seems like a total miracle (she is!); a pure gift from the universe. I am sure you will find answers soon. Waiting for that first appointment and then the test results seems like an age, but just try to use this time to get your health and courage back. As free says, Mr S's protocol is to prescribe steroids from ovulation.