Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

Hi Billy - I have been thinking of you - so thank you for updating us. I can imagine you just feel wretched as well as exhausted and so sad. What an awfully stressful time for you. And so upsetting. I'm sending you all my love.

Looking at your plan its positive that you have come up with three options.

For me I think option no1 or no3 seem like your best plans. As you say it's imperative that you get the results and there are no issues or hiccups - as these answers will enable you to look more clearly at whatever your next plan is. It is so so much money I agree but I think because you are at such a point in your life as you describe I think it imperative you get try to get facts on this most recent loss.
Will they test for all the trisomies? Do they look for anything else? Xxx

Thanks Tumtimes Im not too sure what they test for but I guess as its with Dr S it'll be all the necessary ones.

I prob would have also added that I could have the mva with Dr S on Tuesday next week - but I'd have to decide today and DH has been working away the last 2 days so we havent had a chance to talk properly - so really need the week end to talk.
Or the d&c at the local private clinic wouldn;t be till next Friday - so worried thats a week away and will the pg hold that long!!
The nhs d&c would be Thursday

Im really warming more towards the local private d&c but wish it could be done earlier (they only do ops on a Friday)

Never bloody easy is it!!

xx

...Also wanted to ask if anyone has had a general anaesthetic when coming off the prednisolone? Dr S didn't say it was a problem but I didn't ask and sometimes you feel like you have to think of and ask about every detail, if you know what I mean!
I tend to feel quite strange and wobbly when coming off them after a pregnancy so worried a general on top of that will be too much!

I guess I can check with the local clinic too!.
So much to think about and remember!!

xx

Hi Billy, I'm so sorry that you have to wait so long to get some finality. I'm not sure where about you live but both times I went to the walk in at St Thomas's in London and they were able to do the MvA or the ERPC on the day. All you have to do is turn up first thing in morning and then you are more likely to be seen?! The genetics lab (Viapath) is in the hospital itself and they are very good and quick at carrying out the testing. I had my results back within 2 weeks of the ERPC.

Also with the MvA at St Thomas my husband was by my side the whole time. However for the ERPC I was on my own but was so out of it that it didn't matter.
If you find the speculum insertion painful then I would probably say go for the general. It really is such a quick operation that the anaestetic is very light. I think maybe last time you were just unfortunate with the side effects from the ga?

Sending you lots of strength. Xxxx

You've got so much to think about and on top of the most recent trauma you really are under it. It's just not fair.

Tbh I would be more inclined to go Mr S based on it being Tuesday and then it's all done a bit earlier but like you say if they need to know today and can't wait that doesn't leave you much of a chance to discuss it - and then 2nd choice would be the appointment on Friday I presume.
However if you decide on the private clinic for Friday I think it's worth you getting advice as to what to do if you pass naturally before then. Ie. I know it's utterly awful but the logistics surrounding what to do with it if that makes sense. I'm so sorry you're having to through this.

I haven't had a general when coming off prednisolone all my MCs with ERPC were before I was on the protocol. I don't suppose it would effect it but best to check with the experts I suppose. Xxxx

That seems like great advice four leaf! Would it be worth giving them a call to see if that's possible Billy? Xx

thanks fourleaf and tumtimes

fourleaf was it free at St Thomas then? I live in Bristol so the idea of going to London seems a bit daunting if you can't book in advanced. I could give them a call tho.

Trying to get info out of the clinic sometimes feels like trying to get blood out a stone! I need to know how it'll work - the logistics - in order to make a decision! But they just seem to drip-feed information! Maybe it's me and I ask too many questions!

Hi Billy, it's just a walk in clinic which opens at 830. If you are there for 830 then you are usually seen that day. And if not you are most definitely given the following day with an appointment time. It's absolutely free which is a good thing. The only negative is the hanging around waiting. To give you an idea. I went in at 830. Then by 130pm I had the operation. It was over in 20 mins. I took 40 mins to wake up properly and have a Cuppa and was home by 5pm. It's a long day but atleast you know it's over.

If you have the money then going privately is of course nicer as you will have your own room and the experience will be less stressful. I would have imagined you could go privately in Bristol with the genetics lab for he same price as dr S?

I'm so sorry there is all his waiting for you. But it would be good to get something booked in for next week. Xxxx

Hi Billy... I'm so sad that you have to make this decision. It's so tough. As I mentioned before with my last miscarriage I did exactly as your 2nd option stated. I didn't want to pay the amount of money going private would cost to have such an awful thing done. I wanted to save that money for future treatment. I had no problem at all with getting them to give me the 'products of conception' (hate that term!). The lab will test the babies karotype so it will show up ANY abnormality not just the common trisomies. Mine was an incredibly rare one. So rare that DrS recommended karotype tests for DH and I. So that's something else to bear in mind. That's £500 each. Luckily we'd already managed to get that on NHS just hadn't got the results back (takes 3months!)

Obviously it's not a decision to rush into but if you want the testing done, it's one that you need to consider quickly. Thinking of you over this weekend lovely. But do not give up on your dream to be a mummy. This isn't the end. You have to find some strength to keep fighting, you will get there x

Thanks seeking did you then arrange your own courier service? Dr S clinic said the courier would pick up the following day (if I got to nhs on Thurs) and that it'd cost around £150 (seems pricey).
I'm guessing you literally take the pot with you into the theatre, hand it to the surgeon, then they put it on your bed when they wheel you out? Or bring it to you after? (sorry if I seem ocd about the details but Im just so concerned that I get my babies products and that that part of the process doesn't get f*ed up as it's the only reason for doing it).
Thanks for all the advice ladies! xx

I'm not suer this pregnancy is gona hold much longer!

Does anyone know about storing products of conception overnight in case I can't get it to lab until Tues? I've been given one of those pots/tubes from the clinic which I think has a special liquid in it, but I wasn't given a form that I was supposed to get.
I've looked on the testing labs website and I might be able to speak to them tomorrow but if anyone has any experience of this or knows a forum that talks about this I'd appreciate any knowledge.
And also any advice on not contaminating things!
Sorry this is all very tmi!!!

Hi Billy,

Here is a link to the Viapath testing at st Thomas's. It's a private lab within the hospital. There is lots of info here for how to store etc. Might help. I know that you definitely should not put it in any substance such as formaldehyde or formalin. Maybe just dry is best?

Xx
www.viapath.co.uk/our-tests/cytogenetic-investigations-for-pregnancy-miscarriage-and-fetal-demise

Thanks fourleaf

Oh thats a bit confusing as the container that Dr S clinic gave me has liquid in it I think. Maybe its just different there as they provide the container?

I really wish the clinic would just give all the info you might need in a print out or something! It's a bit ridiculous that you have to tease it out of them!

I gave it to the nurse as we went in and it was then brought to me as I left. We didn't use the courier as we live close enough that DH could drive in and take it himself. Can't exactly remember what the paper was - details of the clinic I think. Also Had to store it in a cool bag whilst travelling with it.
It's not an easy process and does seem to be complicated somewhat by a lack of info from the clinic. I think I spoke with the lab myself at some point too, just to clarify things.
I'm pretty sure plenty of people go down the NHS route after a natural loss so it can't be an issue

Hi Billy, just use the container that dr S gave you. Then you are absolutely sure it will be ok.

Xxx

Billy - just popped by and saw your news. So so sorry, its just utterly shit and unfair that you re having to go through this nightmare and with all the additional stressful descisions and arrangements. Sounds like the other ladies have been able to give you some helpful advice at least. Sending love and strength.

Hope you're ok Billy - xxx

Yeah I'll def use the pot - but my main dilemma is, if I have to store it at home until the lab opens on Tuesday do I store it in the fridge or not??
I've got a vague memory (in my shocked state on tues) of asking Louise this, but not sure if I said over a whole weekend or not, but I think she said not to store in fridge.
I wish they'd just give clear instructions! Maybe it just doesn't matter either way!

I vaguely remember being told not to put it in the fridge too.
Hope you're ok Hun x

Hi just joining..... Congratulations on the births- very inspiring and sorry to hear of your miscarriage billy. I hope you've found a solution re the testing.
I am 40, just seen Dr s for initial bloods. I have had 7 miscarriages, 6 since the birth of my son. I have had one pregnancy on steroids- under prof quenby (high uterine NKC) but asked to get referred by my GP for second opinion at Epsom. Already been to st Mary's and it was all fine. I am just having my 7th miscarriage - it was early 5 weeks. I have very little hope left and my husband is on the point of saying no more. Dr s is "our last stop". If I have HNKC I will be doing the predisolone from ovulation. I feel very anxious about this and possible effect on my cycles. Have you got any experiences to share re this ? I saw DR S on the NHS and have only seen his reg. my follow up is 3.5 months time. I will pro have had another preg and miscarriage by then. Has anyone found a way to get the steroids/treatment earlier than the follow up ? Via midwife?
I look forward to having a good read through the old posts and getting an idea of people's stories. Tgsnha gor support and Kerryk for pointing me in thus direction. ...

Hi See, sorry for your losses. It's so heartbreaking. I'd avoid trying to get pregnant until you get your results. I know it's hard but sometimes the body needs a break. I'm surprised DrS didn't advise that also. Also it will allow you time to heal on an emotional level so you're ready on all levels once you have the results.
I think most of us have seen DrS privately so only had 2 or weeks between appointments. I doubt very much you'd be able to get the pred from your midwife. If your gp is exceptionally supportive he/she might. But maybe not until you've had results?? I've found the NHS generally pretty unsupportive of DrS' treatment protocol.
The ladies on this thread have been through so much, are in varying stages of this journey but there is a lot of success stories to give you hope.

Thanks seeking miracles. I will try and get the results once they come through and try and get a cancellation. There are deffinatly benefits to going private😊 I was far from impressed with my NHS recurrent miscarriage treatment but I am thankful to get the tests done at Epsom and a treatment plan. I pretty much sure I will miscarry everything until I am on an effective drug protocol. At Mary's said it was the old "bad luck" or poor egg quality but I know in my heart of heart there is something stopping the development.

Hi Billy- how are you doing hon? Has it happened yet and have you followed fourleave's advice for St Thomas' walk in? You have been in my thoughts since last week, I hope you're coping ok and getting the testing in place

It's one of the things I regret not managing to do as I started miscarrying on the plane en route to the US (loss #2) and last time the idiots at UCLH didn't send anything for testing to the lab after 2 back to back EPRC's.... I am still fuming about that, such a lost opportunity to check what the hell is going on.

Hi See33 and welcome- I am sorry to hear about your losses and sorry you had to find us here but I am sure you will get taken care of by all the support and info this group has to offer.

I too have done the rounds at St Mary's in London (twice already and have miscarried again under their protocol last time- on progesterone and heparin), have gone to Shehata privately (high NK's found at pregnant state so have been put on pred from ovulation and will need to do intralipids if I get a BFP) and have also gone to Coventry (they found marginally high uNK's and have prescribed pred+heparin from BFP and progesterone from 7 days post ov) and to UCLH's fertility/reproductive medicine/recurrent miscarriage clinic (they didn't find anything either).

I just turned 40 too, have a DS who's 4.5 years old and have had a 20 week mmc after him (following a very protracted 15 month process of ttc after he was born), followed by 2 more mmc's at 9 weeks each, more or less.
As you said, I was sent my merry way from St Mary's and was brushed off as "bad luck, try again"! I felt that their attitude is quite dismissive of modern NK cells/auto immune conditions' theories and very much focused on blood clotting/uterine abnormalities.

My absence of pattern in my losses after my DS, especially my late loss, cannot simply be dismissed as bad luck and like you, I have a very strong feeling that there is something else going on as well.
In my case, it may be linked to my thyroid function and antibodies and my Hashimoto's - by the way have you had that checked at all during your investigations?

I hope you can find the strength to keep going hon, it's very very testing and affects so many aspects of our lives. My DH is equally skeptical about pushing it for another go and won't hear about any other assisted methods such as IUI or IVF. It's really hard when you don't feel that your OH is fully on board as this is a decision which needs both partners fully involved.

I am sending you my love for these difficult moments you're going through.
In terms of getting the meds, I was given a private prescription by Louise and I also managed to get more prescribed by my GP after presenting her my with Coventry letter. I also got my progesterone through my GP but the one thing she wouldn't prescribe was heparin (I suspect due to cost) so I got that straight from Coventry and through St Mary's (which is really the only thing they're good for!)
I wouldn't worry too much about heparin as the only reason they are giving it to me (despite not having a proven blood clotting condition) was my 20 week late loss and the fact that the post mortem showed a smallish placenta.

Best of luck love, let us know how you get on.

Hi ladies
Im still having a nightmare - mainly trying to figure out stuff with relation to the clinic and testing!
Ive decided to have the eprc on the nhs which will be thurs (if it continues to hold) and to send products off for testing.
Does anyone know what histology testing is? The clinic have thrown this in the mix now but not explaining what it is or if I need it. The secretary saying dr S isnt too interested in it but its on their costing if you have the mva with them. Its all second hand info and Louise is busy or not in. They say we can have it done locally but not saying how - if products are being sent to London! Im so confused!! the histology test will be 180.
Ive so had enough of the way they drip feed information to us. They making this process more difficult.

Not really sure what the difference is Billy- I only had the karotype game done. When this is all over I'd send an email complaining. They are quick to take your money but at this point you need their support.
I have to say they were great when I was going through it all last year - I'm sorry you're not having as easy a time of it.
I think the most important thing is the karotype test - that will tell you if it was chromosomal. Focus on that. Histology wasn't even mentioned to me. Have you spoken to the lab - they may be able to clarify it for you. Thinking of you