TTC or pregnancy on prednisolone or similar part 9

[sarahs999]

Oh dear - we reached 1000 posts on thread 8 without noticing! I hope you can all find this. 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!

Links to earlier threads:

Part 8: www.mumsnet.com/Talk/conception/a1492407-TTC-Pregnancy-on-Prednisolone-or-similar-part-8#33842381

Part 7 www.mumsnet.com/Talk/conception/1452035-TTC-Pregnancy-on-Prednisolone-or-similar-part-7

Part 6 www.mumsnet.com/Talk/conception/1419032-TTC-Pregnancy-on-Prednisolone-or-similar-part-6

Part 5 www.mumsnet.com/Talk/conception/1391787-TTC-Pregnancy-on-Prednisolone-or-similar-part-5

Part 4 www.mumsnet.com/Talk/conception/1366323-TTC-Pregnancy-on-Prednisolone-or-similar-part-4

Part 3 www.mumsnet.com/Talk/conception/1348773-TTC-pregnancy-on-Prednisolone-or-similar-part-3

Part 2 here www.mumsnet.com/Talk/conception/1323594-TTC-pregnancy-on-Prednisolone-or-similar-part-2

Part 1 here www.mumsnet.com/Talk/conception/1236324-TTC-pregnancy-on-Prednisolone-or-similar

Ari - Sorry to read your dilemma. I was wondering if your doctor give you an couple of HCG tests over a few days to see what the levels are doing? When I had my BFP earlier this year I was constantly weeing on sticks and thought something was wrong when the good old clear blue prediction date stayed on 1-2 weeks for too long and sadly I m/c a while later. Even a few days after the cruel stick still said pregnant. Sorry, I'm not very clued up on hcg levels but intralipids are not cheap. I just think the medical people sometimes forget how totally consumming and worrying it is once you get that longed for BFP and the phrase 'what will be will be' is one I personally would like to shove where the sun don't shine on one particularly thoughtless nurse I came across last time when I was sick with worry and just wanted an answer. I am sure someone on here will be able to chip in on my suggestion as it may be I'm wrong and a beta hcg test won't give answers at this stage. I am sure your stress levels from worrying won't be helping you.

I'm 3dp3dt and doing my nut. Lots of stomach grumbles today but I'm sure it's all in my mind. Back to work tomorrow which will take my mind off things but also I need to try to keep the stress levels down....

As a newbie, I just wanted to say I am so sorry to Sue. I've read back a few pages and I feel so much for you and your loss.

Ps I can't work out how to get bold for names via my iPhone!

Thanks coopde (and welcome to the thread, think I missed your joining somewhere!). Yes, I could have hCG tests if I twisted my GP's arm, possibly, but I don't think it's worth it to be honest having done exactly this during my early MC last Dec and it proved nothing in the end (hCG rose ok but still ended in MC within 2 weeks). It's just a(nother) waiting game, I guess I could it as a second 2WW, albeit one that's unfortunately unlikely to have a good outcome.

I know what you mean about some medical 'professionals' really lacking in sympathetic patient manner, even those that really ought to know better, like some in EPUs. I will say that I've never had anything other than absolute sympathy and empathy from any of the NLC people, they've always been really good (and most of the nurses don't try to give you false hope, either - when I've explained my fears over faint lines they have always understood and largely agreed with what I've said, although they do try to look on the positive side).

When is your OTD coop, I'm never sure how long after a transfer IVF people are supposed to test? If someone could come up with a foolproof way to distract us for a couple of weeks at a time, they'd make a fortune, I'd buy it for one!

sue Hoping you're doing ok xx

Oh, and to embolden a word put a star * either side of them.

Ari - well, they say positive thinking helps and negative thoughts create toxins so positivity may win the day?!
My clinic (I am having ivf this time via nhs - my one free cycle) recommend testing 2 weeks after egg collection, so that's next wednesday - one more week to go. I'm feeling every twinge though I fear it may just be the result of sausage and bean casserole! (tmi!).
Went back to work today and it did keep my mind off it in spurts - I think I can manage 10 minutes at a time without having wandering thoughts contemplating the result. I seem to be comfort eating so I've put on a few lbs already in the last couple of weeks, but I'm not worrying about that for now.
Well, fingers crossed all round! Deep breaths! Just when you could really do with a glass of wine you can't!
Emma / coopde

abney congrats.

coop really hope you get a bfp soon. The waiting is so hard.

ari hope you're doing ok?

I got an unexpected bfp on monday night. I had a normal period a couple of weeks ago so I stopped the pred. I still tested for a few days and got bfns. The reason I still tested was because I got pregnant in march and still had a period too. Its so strange. But I randomly tested on monday because I felt a bit pregnant and it was positive. Was totally freaking as I've missed 2 weeks of pred now. I did a cb digi test and it says 2-3 weeks, but I think it should say 3+ by now. Im going for intralipids on sat but have no idea if all is ok or doomed, its all so bizarre.

Sorry for long post. Hello to all, hope everyone is ok x

abney and Mollyboo congrats on the good news. Keeping my fc for you both!

sue thinking of you. You sound very stoic and you definately deserve some good luck now. I had to comment on age as I am now 43 so please don't think 40 is too old!!! I hope Mr S and Louise have some good advice to offer.
greenolvies lovely to hear fm you and hope you are all doing well!

Morning ladies, mollie hope you're doing ok this morning - did you go for your ILs yet?

Well just got the results of my and OH's last round of blood tests, for LAD, karyotyping and DQa. LAD and karyotyping all ok, but it seems OH and I are an exact match for DQa, which is not good at all. He is 0201,0303 and I am also 0201,0303. Basically what that means is 50% of any good embryos we produce will be an exact match with me, and my body will destroy it. ILs are commonly used to treat this if you don't already have an issue with NK cells (this 'match' will trigger an autoimmune reaction) but I have of course got very high NK cells even without being pregnant, so the reaction by my immune system will be even higher to one of these 'matched' embryos. I think LIT may be used to counterract this, but I'm not sure - I'm trying to get expert advice on it at the moment - but to be honest even if this is the case LIT is really expensive so I'm not sure we could go for it anyway.

Apparently the autoimmune system attacks the embryo even before it implants, meaning it's damaged before implantation so even if it does manage to implant, it either won't implant properly or it's so damaged that it just can't develop properly.

So I now have a triple-whammy of my age meaning I may have chromosomally-knackered eggs, if an egg is good it has a 50% chance of being a total match for me - if it's not a match my NK cells will try to kill it off anyway, and if it is a match my NK cells will have declared open warfare on the poor little thing right from the start!

Oh, and just to make things worse, the more of these 'matched' embryos that attempt implantation, the higher the level of killer cells that get generated. So, after 5 or 6 miscarriages, I'd say prospects ain't looking too good!

I'll never know if my 'early miscarriages' (or chemical pregnancies, whichever term you prefer) are down to old-age eggs or simple DQA matching.

I have no idea where we go from here - haven't told OH yet as it just feels like yet another death-knoll in the hopes of us ever having a baby together.

But I am glad I got tested for this - at least we know.

Hi everyone. Can I join you please? I had my 5th mc beginning Sept, all losses between 6-8 weeks. The last one was particularly cruel as we got a heartbeat at 6 weeks but it died soon after. I took cylogest with the last pg and 150mg aspirin.

I got my results from Mr S yesterday, all normal. I feel really deflated, was really hoping to get a reason for my losses. Despite this he's convinced I have an immune problem and wants me to go ahead with the treatment for high NKC (pred and intralipids). Of course I'll give it a go (I'll try anything at this stage). Just wondering if anyone has had a similar experience? I can have more tests but at £700 it seems pointless as I think treatment would be the same if we got a positive result. Obviously it would be nice to know but this is costing so much money already!

Sorry haven't read the whole thread yet but it is enouraging to see the successes on here.

Coney sorry for your losses. This thread has been a great source of support for me. My NKC results were borderline I remember, the high end of normal I think. I was still put on the steroids and my next pg was successful (after 4 losses). Obviously not everyone is so lucky, but don't give up hope just yet.

Hi coney, so sorry for all of your losses, I really hope the treatment plan works for you next time even though you weren't diagnosed with high nk cells.

ari I posted about your results on the superov thread, hope you're doing ok, its just so complicated for you but you never know, this one might be the one that sticks. I'm going for intralipids on Saturday, not sure if its a waste but my hubby keeps telling me to stop being so negative. I'm PUPO but don't want to be too positive as its too heartbreaking if it goes wrong.

Ari have just read your post. What a shock for you, I'd never heard of that before, it seems very very unfair. I do notice nothing you've said means that it is impossible to have a baby - and where's there's a chance, there could be a happy outcome.

Thanks iggi (and mollie) ... no, it's not impossible, and I have to keep telling myself that. But it is very very improbable - the odds are just stacked way too high. I'm not quite at give-up point - but really, it's beginning to look like utter madness to just keep on trying, given the odds.

But then, whoever said I was sane .. ;)

Sorry, meant to say, welcome Coney - so sorry for your losses, but there will be an answer, and given his success rate, I hope Mr S holds the answer for you.

Welcome coney and ari I'm sorry to hear your news. LIT is the option I believe. Were these dr G tests? It makes me a bit angry dr a dismisses things and believes he is the ultimate when his tests are very top line and doesn't pick everything up. All I'd say coney in my humble opinion is a year ago I took having High NK cells as my answer but it seems now a year later and no luck I had other issues. Is a bit of a gamble but if I was being 100% honest I would go for dr gorgy tests that look a lot deeper. If dr s thinks you've got immune issues hasn't he better then back it up and suggest which ones? Up to you and depends on £ as usual but a few of us have gone further and revealed other issues. PM me if you'd like more details.

Thanks duggs - no, these were through Mr S, I requested them and he was happy to do them. If I hadn't specifically asked for these tests though, they wouldn't have been offered.

Oh lord, it gets worse. I misread our LAD results, it seems our LAD results are very bad too - seems I have virtually no 'blocking' antibodies against OH and as such my body doesn't recognise any embryo with him as 'foreign but ok' - and as such, goes all out to kill it off (again).

As half the embryo?s DNA comes from the mother, the theory is that if the body cannot recognise the father?s DNA, it will treat the embryonic cells as ?altered self? and trigger an aggressive NK response which will increase NK numbers, NK activity and/or TNFalpha levels. High levels of anti-paternal antibodies should mean that the body recognises embryonic cells as ?foreign? but ?benign?. Low levels of anti-paternal antibodies are associated with repeat miscarriages (which are believed to be the result of NK and TNFalpha responses to embryonic cells), and are also thought to be associated with repeated failed implantations.

Bl**dy hell, just as I thought things couldn't get any worse :(

ari forgive me if I speak out of turn but these tests dr s reluctantly gave you are standard for dr gorgy. He has treatments for them - injecting DP blood anti bodies or something similar. Not particular cheap or pleasant I don't suppose but if you want to throw the book at this so to speak I would strongly recommend £130 investment in a consultation with him ASAP (tell receptionist u r pregnant and have Had LAD) etc am sure he will see u and at least u r talking to someone more experienced in successes in this field. He worked closely with dr beer when he was still alive.PM me if you'd like more details but just thought I'd mention it isn't necessarily the end of the road.x

Thanks duggs appreciate it, of course you're not speaking out of turn! I know they're standard tests for Dr G, there's a very big part of me that wishes to god we'd gone to him in the beginning because we would be where we are now a year ago if that had been the case, and not have had all this financial outlay and heartbreak. I'm not now pregnant, I tested this morning and it's negative.

The problem with LIT treatment is if you also have a 100% DQa match, as we do, then paternal LIT stands very little chance of working anyway. You get injected with white blood cells from your partner, in the hopes of triggering antibodies within yourself against your partner's DNA so that your body recognises an embryo with his DNA in as significantly different to your own. But if you also have a high DQa match, the chances of you developing antibodies (against something that is after all genetically very similar to yourself, which is the DQa bit) are very slim. So it would have to be donor LIT, ie white blood cells from someone other than my OH - which I'm really not comfortable with. I understand Dr G charges £1500 for 2 LIT shots plus £270 for blood tests before - and even then it only lasts maximum 6-9 months. That's almost £2000 on something that has only a very slim chance of working. You have to ask yourself, how much more do you throw at it, especially with so very little a chance of working? And that's without the already-aggressive immune system and blood clotting issues I also have.

We talked about all this last night; with the DQa match perhaps we'd have carried on, since there was still a 50% chance of a non-matching embryo. But our LAD results were so bad - the lowest I've ever seen, and I've read a few results from ladies who have had this done and were considered low; I don't just have a low reading for antibodies, I have virtually none - and the chances of paternal LIT working is so very remote, that we have to face the reality there is virtually no chance of us ever keeping any good embryo we produce.

OH wants me to keep my appt with Mr S in 2 weeks, just to hear what he has to say, but in truth I cannot see without putting ourselves through huge amounts of more treatment at almost as much a cost of full IVF treatment that we can ever be successful. I think we just have to accept this really is the end of the line for us.

Sorry, I didn't mean to sound doom-and-gloom - I will see what Mr S has to say, and I will investigate whether going to the Serum clinic for LIT is an option (it's a LOT cheaper) - but I think in reality the odds are just too damn stacked against us.

Ari that's really saddening to read. So much for the benefits of being soul mates/ very similar to one's OH eh?! Also :( for the bfn this morning. I know you'll say you were expecting it but still...

I also take on board what Duggs says about other experts going deeper with their standard tests. From my perspective I'm prepared to give it another go with Mr S now I'm on the cusp of That Time again. Also I don't want to waste the half dose of Humira! But if the same thing happens again then time is marching ever onwards and I owe it to myself to explore other options. Saying that I'm not sure I'll be able to bring myself to do some of the more aggressive things. DH and I would have to decide how much we want to put ourselves and my body through...

So much to think about. So unfair! Big hugs to you Ati. It really sucks. Take some time to consider your options xx

Ari, I'm so sorry. You've been on such a rollercoaster recently with all the various tests and then your recent BFP, and now, to be faced with this must be devastating. I can well understand the reluctance to put yourself through anymore heartbreak and physical stress.

Sue, you are still in my thoughts. I have every faith that you are still very much in with a good chance of a healthy baby. More often than not these anomalies, or chromosome abnormalities are just a random chance thing that happens when one particular sperm meets one particular egg. The chances of the same thing happening again, I suspect, are very unlikely. Perhaps you can get your consultant to refer you for genetic counseling for reassurance?

Welcome to Coopde, wishing you the best of luck with your pregnancy. When is your next scan?

Welcome also to Coneyisland. Good luck with TTC.

Buster, how did your Nuchal go? I was hoping to hear from you on Wednesday. I hope everything's OK.

Abney, so glad to hear your scan went well after your earlier worries.

Cate, I'm on the higher dose and started weaning at 9 weeks. I'm actually on my last pred today, although I have a few 2.5mg ones that were my granny's which I may take for a couple of days after as I have had absolutely stinking headache pretty much every day whilst coming off the pred. They seem to get more and more consistent the lower the dose so I'm pretty worried about the next few days of coming off completely. My moonface seems to have calmed down considerably over the last couple of weeks too, thank god! There is a chance that my headaches may also be down to the tension of the last couple of weeks with my Nuchal/CVS etc.

Talking of which, I'm hoping those of you who are further along than be or recently pregnant can help me with this. I have been having a lot of twinges and crampy feelings over the last couple of weeks. Since I had my CVS really, which is why I'm concerned. The timing may be a coincidence and I'm hoping it's nothing more than the "round ligament pain" or stretching pains I keep reading about but they have been pretty much every day and go on for quite a long time. I thought these stretching pains came and went quite fleetingly. I was awake with them at 5 this morning and have them again/still now. I haven't had any bleeding, although I've only had bleeding with one of my miscarriages and that was a good 2 weeks after the heartbeat stopped. I do still have sore knockers, constipation, inflamed sinuses etc so all symptoms are still present but I can't help worry about the fact that these pains all started after my CVS. My next scan isn't until 26 October. I've spent so much money this month on the FMC, Intralipids etc that I'm reluctant to spend more on another private scan only to find out it's just growing pains! So, anyone else, do these ligament pains come and go for hours each day?

ari so sorry to hear about your results and your bfn today. Its all so complicated and there are so many obstacles for you. I hope you get some more treatment options which are right for you both so that you have the choice to carry on.

Im also starting to mc today. I woke up spotting and bought a clearblue digi which now says 1-2 instead of 2-3. I feel pretty empty but im glad I only knew I was pregnant for 4 days. I did miss taking pred for 2 weeks as I didn't know I was pregnant so if that's the reason then I can live with it. It must sound like im stupid but I had a period and still tested for a few days into my period and got bfn's. But I know from being on this thread that there are quite a few other reasons it might be happening too so its hard not knowing if you're doing the right thing. Im just going to try again as soon as we can.

Hope everyone else is ok.

choccy, kittens and mollie Thanks so much for your good wishes. choccy Fingers crossed for you that you don't have to consider the extra testing, I hope this renewed attempt brings you the success you deserve!

mollie So very sorry to hear you're going through this too. It's just rubbish to have hope and then have it taken away. Fingers crossed for you too that the next cycle brings success.

sue Also still thinking very much of you, and hope you're doing as ok as you can be right now.

Ari and Mollie so sorry to hear you are now no longer pregnant. This awful ride does suck for some of us and seems to have no end in sight. Go and get some bottles of wine - merlot has helped me get through the last week! I should take out shares in wine at the moment.

Ari I would go and see Mr S as planned but take Duggs advice too and book an appointment with Dr G for a 2nd opinion as you dont want to look back in the future and think maybe we should have tried once last go with him. I really feel for you as part of the grieving process with any loss is the realisation that you might have to give up, so you are grieving all the lost chances too.

Kittens I had the stretchy and crampy feelings around the same time as you so dont worry. Have you got a doppler to put your mind at rest? That really helped with me. Saying that, it didnt change the outcome as I think you will worry all the way through. Maybe you should ask for some extra scans? You could lie and say you have had some spotting???

We have got a funeral booked for Scarlet on Tues 16th October so I will be able to finally say goodbye to her. I am still cuddling her teddy at night and talking to her but every day is getting a bit easier. Roll on December when I can start TTC again. Not looking forward to it all again to be honest!

Waves to everyone else xx

sue Good to hear from you, and will be thinking of you on 16th October. xx