TTC/Pregnancy on Prednisolone or similar part 8

[Arianrhod]

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!

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

[Pebbles73]

It's very confusing the clexane thing because Mr S prescribes it if you are having ivf but not super ov/trying naturally! I emailed Louise to ask why I needed to take it as I have no clotting issues (I did test positive for mthfr though) and she said it was to help with implantation. Doesn't really make sense to me.....
Feeling rather fed up this evening and just want to get pregnant!!! You know when you just feel really frustrated and up tight about the whole thing? Also not sure if to start testing for other things or not as so much conflicting info and costs a lot of money that could be spent on Ivf
Also I have only tried one cycle of super ov with steroids and one round of ivf with steroids so maybe I should give them a chance?? I know my dh thinks I should give them a chance and stop trying to diagnose other things!

Duggs with the hidden c testing can you do it directly through Serum it do you have to go through Dr G? Something I am considering doing.

Sorry for this moaning post but needed to get some frustration out and talk to people who understand.

I hope you are doing ok after your erpc Echo and looking after yourself.

mollie I was terribly sad to read what you have been through, you are very brave and I hope Mr S can give you some answers.

[duggs1976]

Hi pebbles not sure I would suggest you go via a dr as u need interpretation? He did a vafinal swab £75 to detect unreplasma. Then the menstral blood u need a pot and a fed ex bag is £335 or something. In my case having elevated nk cells was an effect of having a hidden infection (although no symptoms and not picked up on standard uk nhs tests or even pre ivf tests). Looking back I think dr s should at least include infection screening unless there is a more obvious reason for high nk cells like the thyroid or other immune related issues. It would then help address the cause rather than attempting to suppress the effect. pebbles to be honest if you can afford it get tested for everything that could possibly be your issue. If then u r left with just nk cells then at least u know your only optin is to keep trying throwing steroids at it. There r clear cases where nk cells seem to be only issue - when dealt with - even v high case like free then she is successful. Also the speed of getting pg like pq. Then there r the others (inc me) where there r obviously other factors and just throwing more steroids or more SO's at it is a bit of a stab in the dark. Every situation is unique but it does worry me that I almost walked away as I didn't want to throw another £2.5k after then £8k is just " wasted". However, if I was walking away I had to know I'd done all I could. I seriously don't think there r any tests out there I haven't done now. Kind of a reassuring feeling as what else can I do if I don't conceive and carry to term after these infections have gone?

[duggs1976]

Oh and if I sound like rockefeller I'm not just have a 0% credit card or 2 :-( which I will probably be paying off all through my child's life - if I ever get one !

[picolina123]

arian thanks for info, where did you buy it from, i went back on fertility friends to read about this mushroom thing and i couldnt find it, there is so much info on there about lots of different topics.are you going to athens for tests? that would be fun
Got call from dr wings assistant, going on the 19th jul, 250ish for initial consultation and then everything extra, expensive esp since you are basically unemployed !she did tell me to bring all tests etc if i want so im going to do that, not sure if ins will cover me for anything , i have joined pruheatlh on hubbys ins but you know what ins companies are like.

i find dr sheata (via nhs) fustrating as well, i dont knoe how many times ive asked about the blasted intralipids, lisa told me last time, hes stopping using it as it expensive and doesnt do much, but from the sounds of it he is still telling girls to do it.

i do feel really weird and v stressed trying for bfp without steriods, can do test this sat so lets see.

cheerful this is you last trimester! does it feel like a dream?

[picolina123]

excuse all the typos!!! i read it back i think OMG

[picolina123]

pebbles dont worry if there is anyone you can grumble to its us , we get it!! its crap, unfair and boo hiss to all the women who sail through their pregnancy!!

[Pebbles73]

Thanks for all the info Duggs and yes if it still doesn't work ( am sure it will) you know you have tried everything. Only thing is half he things they test for if you have it they just seem to give steroids/ intralipids/ ivig anyway!

Ari I think you are doing the Athens test did you go through Dr G?

Here, here picolina and thanks! My dh is very good with all this and don't know what I would do without him but occasionally I think he thinks I am a bitt crazy with all this and self diagnosing. :)

[Pebbles73]

Oh I meant to add Duggs I think for me the high nk's are maybe just my over reactive immune system as I have hayfever/asthma/eczema and quite allergic to cats and dogs, get heat rash generally allergic.

[Arianrhod]

pebbles No I'm not going through Dr G, I'm going straight to Serum, Penny sent me the doc on how to collect and send the sample. (pico no I'm not actually going to Athens - well, not yet anyway, who knows in the future! :) ) They then interpret the results for you and more importantly, will send you a prescription if you need one (always the difficulty if you are testing directly abroad rather than going through a UK doctor). And duggs £335 for a FedEx envelope?? I was told FedEx International post to Greece was £48 (and courier to your door to collect it within 20 minutes for one lady!). However, many ladies apparently use Royal Mail, cost about £8, which is what I think I will be doing.

You can choose to just be tested for hidden C, or you can choose to have the full range of testing covering Mycoplasma Genitalium, Mycoplasma Hominis, Ureaplasma, Garnerella Vaginalis, Atopobium Vaginae and Chlamydia.

You need one of those urine collection tubes (the ones you use whenever you have a urine test done - I understand you can get them for around 50p from most pharmacies, or they have a big tub full of them sitting on the cistern of the toilets in NLC I think!) and some saline solution (like contact lens solution). Seems fairly easy to do, I'll let you know next week after AF arrives! :)
If you're interested in reading more about getting it done via Serum, and about testing for hidden C in general, there's a really good merged thread here www.fertilityfriends.co.uk/forum/index.php?topic=237119.0 .

pico I bought the mushroom/herb capsules from purehealthonline - they're sitting on my desk at the moment, looking at me saying "take me, take me!" - and the FF link you were looking for again with all the info on them is www.fertilityfriends.co.uk/forum/index.php?topic=242395.msg3904730#msg3904730 - scroll down the page to the Mycology section. HTH! I'm only not getting tested with Dr Wing because I already know I have v high NKCs, so I was advised there's little point in getting tested for the same thing again, since the treatment plan is the same.

Thanks everyone for your comments on Clexane. Mr S told me they only use it with IVF patients as it helps with implantation, I didn't know it was considered standard treatment for NKCs but it certainly does seem to be the standard treatment for any kind of blood clotting issues, which of course MTHFR is (it falls into the category of "Inherited Thrombophilia" apparently). I'm thinking if I don't have Clexane, then perhaps what you were suggested for your raised TEG result sue might work - from the elusive BFP I should take double BA. Not sure, still researching on that, and will certainly take it up with Mr S again if I get to that point. And yes cheerful I'm homozygous, which means I have a more serious issue with clotting apparently. Mind you, having said that I had DD with no problems (and no medication), so then what? Mother Nature having a laugh at my expense, I think.

battery I'm rather horrified Mr S said you wouldn't need Clexane with Factor V Leiden ... that's even more serious a blood clotting issue than MTHFR. How could he be so different in his opinion on that to every other recurrent miscarriage specialist? I understand differences of opinion and all that, but this seems a fairly major thing to disagree with everybody else on.

pebbles I would agree with duggs on getting tested for everything you can afford, to be honest - personally I hate to think that I might be throwing everything I have at the problems I know about, while there may be other problems that I don't know about that will stop any chance of a successful pregnancy ever happening. For example with OH. I intend to get tested for as much as I can, I only wish I had been stronger at insisting on more complete testing right at the start, but of course I didn't know diddly squat about recurrent miscarriage testing back then. Wish I didn't now, too!

And pebbles you whinge all you like, you're entitled to and this is certainly the right place to do it as everyone here understands and sympathises.

echo Hope you're recovering well after your ERPC and taking some 'you' time out.

choccy How are you doing??

/waves to everyone

[Arianrhod]

pico I should just say, if you read that Mycology info, she's got her dosage wrong if you take the combined Astragalus/Gentiana capsules. She says:


2 herbs, Qin Jiao/Qin Jhao (gentiana macrophylla)1.5g (available from purehealthonline) and Huang Qi 1.5g (astralagus). Purehealth have just introduced a combined capsule of 0.5g each (so 3 capsules a day)


But the capsules are actually 250g of each herb per capsules, and as you're supposed to take 1.5mg of each of the two herbs per day, that means 6 capsules per day (2 three times a day).

Just so you know, if you want to work out costs!

[helterskelter99]

By BA do you mean baby asprin? in which case I would be v careful about doubly up as there is a school of thought that thinks that it doesn't help implantation.

I have really struggled to geth clexane as the West Middx don't believe it helps in early pregnancy & won't prescribe it until I see a consultant & I can't see a consultant untl 16 weeks. Luckily my GP just repeat prescriptioned it and I am going back to see my IVF guy on Fri to get a plan for post 12 weeks.

Anyhow am now 10+2 scan today showed baby OK sizewise & a heartbeat of 181 so all looks normal. Can start to worry about chromosome issues at the 12 week scan now which was what went wrong last time we got this far (in 2008!!)

xx

[Arianrhod]

Excellent scan news helter! And yes, I mean baby aspirin. I was thinking only of doubling it up from BFP, and then only if I can't get either Mr S or my GP to prescribe clexane. I have to take baby aspirin every day anyway because of the MTHFR, and yes I've read that some people believe it can hinder implantation - yet others believe it can improve it. Yet another case of opinions varying wildly!

Just out of interest, has anyone managed to persuade Mr S to prescribe them something that he thought you didn't need? Just wondering if I might stand a chance, although he is quite dismissive of MTHFR causing issues. Not sure if I might stand a better chance with my GP, although I understand the PCT for our area is quite restrictive :(

[freelancegirl]

Great scan news Helter! Such a great step. Who was your scan with? I know Mr S sees getting passed 9 weeks as a real milestone. I hope the two week wait before the big 12 weeks scan passes as quickly as possible for you.

I must say I am really reading all the additional research findings with interest Ari and Duggs - about hidden C and random mushroom treatment etc. I can see how it would definitely be tempting to explore all these options. I had been tentatively looking into the Athens tests before this pregnancy. Pebbles I know this creates a dilemma for you about what to try but I also agree that you have only had one cycle of IVF and one cycle of SO on steroids so maybe give yourself a limit of say 3 months try on SO before you go down that route? Up to you. I understand the frustration in waiting though! Versus the anticipated costs too. Hey, if the courier service costs more than the price of a return flight I would be tempted by a long weekend in Athens :)

As for asking Mr S for alternative treatments - I did once ask him if it would benefit me from having tests for ureaplasma and the other one and he seemed to think it wasn't necessary. I also asked about intralipids pre-conception and he said he thought that was a waste of money too. I guess the thing to remember is that whilst every expert is going to have their own take on it, he is very specialised in his field and overall has a remarkable success rate with women who have tried a whole lot of other things beforehand, so I guess he knows what he is talking about! There has been a run of bad luck and a few struggles here recently but there is probably a case for volunteer bias, in that the people who are more likely to need us are the people who continue to have problems - rather than the many cases I have heard about in immunology that say 'had miscarriages, took steroids' had a baby'. We have to remember that does happen too. BUT we are also here because of our own research and inquisitive, take-action attitudes in the main and it's that which will hopefully help us explore all options.

Right, am off to do some list updating. Merc thanks for doing it the other day!

[freelancegirl]

Thanks for adding your details merc and for everyone else who has posted their pregnancy history in the last few days. I can't get my head around adding them all on here so was wondering if you wouldn't mind doing a quick addition like on mine and the others who have added history? Would be great to have it all in one place.

Weds 13th June

The babies are arriving!

Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 ? 39 weeks (ELCS) 14/5/12 7 lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (ELCS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (ELCS) 7lbs

BFP 3rd Trimester

Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle) heart stopped around 7-8 weeks, Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 34.1 wks Next appt/scan, 22nd June EDD 24/07/12 by LMP, 22/07 by Nuchal
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 34.1 wks EDD 24/07/12
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 31+0
coleyoz - V High NKC. DC#2, BFP cycle2, 30+2

2nd Trimester

FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 26+0
Mercator - V High NKC, DC#2 25+5 (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks)
Hopefulfor2nd - High NKC - TTC#2. - 25+0
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 25+0
PQ77 - TTC #2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) 20+3 Next scan @ 20 weeks

1st Trimester

HelterSkelter (IVF and immune therapy) 10+2

To be added to shortly...

TTC ? ASSISTANCE - SO/IUI/IVF

Suemays - TTC#2 DD, followed by 5mcs all 6-8 weeks. V High NKC, TTC #2. Superov. (Pred & Hydroxychloroquine) 6+6 Scan 14th June

EchoJuliet Preg 1 - awaiting diagnosis, MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w).
Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
duggs1976 - TTC#1 4 mcs all 7-12 weeks. High/V High NKC - TTC #1 - IVF cycle #1 ?pred, intrallipids, metformin, clexane, cylogest
Havingkittens - TTC#1 4mcs between 6-8 weeks, 2 Downs. Upgraded from High to V High NKC -10 pred ? 3rd cycle SO
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),
eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine)

TTC
London - High NKC, April - mc on treatment.
ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, gen 6-8 weeks. NKC not tested, TTC #4 cycle 2 (after m/c 12) Fertility consultant
prescribed pred.
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, decided to only take Pred from BFP
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
BellyD - V High NKC, MTHFR homo, TTC#1 cycle 2, hydroxychloroquine
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Carebear1 - V high NKC
Gransol - Seven mcs - all losses between 6 & 7 weeks

Current status?

Cherrycheeks - V high NKC, TTC#2
Breezyweezy - V High NKC - TTC#1
AandRmum - High NKC
Cornflakes30 - V High NKC, underactive thyroid
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2
Zoeella V.high NKC, Factor V Leiden. abandoned IVF, pos PCOS\

[Arianrhod]

free Agree totally that Mr S is an expert in his field ... but surely his field is Killer Cells and their effects, not blood clotting factors (as per his dismissal that nothing stronger than baby aspirin is needed for homo MTHFR where many other experts in their own field state stronger blood thinners are needed), genetic mismatches or what 'hidden' infections could do, amongst other things. I have no doubt he has understanding of all the other possible issues that might cause recurrent miscarriages, but his specialism is in Killer Cells and the tackling of the same, at which I have no doubt he is top notch. Rather like a surgeon who specialises in heart disorders being asked about arthritis - he will be aware at a general level of the possible causes and treatments for arthritis, but he will refer you to a rheumatologist to deal with your arthritis issues, as that's not his field.

That said I have a great respect for both Mr S's knowledge and his interest in his patients; I just wish he would widen his scope to acknowledge other areas may have as much of an impact on pregnancy as his own specialist field and test for more things.

[london371]

Hello everyone. Have been lurking. Nothing to report. Same old same old ttc! Thanks to ari and sue for the links to the new thread. Wow things move on fast here!

I have to say, I agree with ari, Mr S is an expert at NK cells, but when it comes to looking at wider issues, he seems to dismiss other ideas quite readily. As far as I am concerned, the NK treatment didn't work and I want to investigate other possibilities. Wish there was a one-stop shop, it is so confusing every specialist having their own special theories!

There is no doubt NK cells treatment under Mr S works brilliantly for some lucky ladies, but for others maybe looking at other tests and treatments is the best way forward to cover all the bases. It is so helpful to hear other people's research, thanks so much for sharing it guys.

[picolina123]

pebbles i think my husband thinks im nuts most of the time, a couple of nights ago i told him im starting to feel stressed and we had decided to go see dr wing which is expensive and im only temping part time so i might as well not be working ( money wise) so i was stating to stress about costs etc, i told him if i mention anything to him about money etc instead of him also getting stressed he has to be like ..what ever it takes , dont worry. yeaterday i asked him about something totally different and he says to me ..whatever it takes !!! with a cheeky smile .. lol very cute .

arian i went back on dr wings website and called one of his associates that he has trained in wimbledon and recommends and am seeing her on sat morning , im trying to get my test results from st helier before.

She only costs £60.00 to see so if i feel shes rubbish i will still keep my apt next mth otherwise i will cancel, if shes on his web site i have nothing to loose.

[Coconutfeet]

Ari - I was prescribed Clexane by Mr S, because the tests showed I'd got prothrombin II gene mutation (a sticky blood issue). I was on it from about 6 weeks (when I got the test results. Previously had been on aspirin from bfp) until 24 weeks. I then went back on the aspirin to 35 weeks and back on clexane for a week after delivery.
The initial prescription was private (and expensive - each dose costs around £5 and I had to take one a day), then I got my GP to prescribe it for me with no problem.

Helter - Good news!

We exchanged contracts on our house today. Completing at the end of the month. V excited. I can't wait to have a bit more space!

[Pebbles73]

Thanks for the info Duggs and Ari thinking I will get those tests done as not massively expensive. Didn't get a chance to look at the link you posted Ari but will try tomorrow.

Free it is defo a bit of a dilema but will prob do the super ov for a bit and do the above testing and then go from there.

Picolina made me laugh about your dh, sounds a but like mine as in test what you need to test for and don't worry about money. One of us needs to be practical though! Also glad not the only one who's dh thinks they are crazy.

Had a crap day at work (moaning again), had to contend with a girl at work and her two month old baby and then one of the guys coming into my office at the same time announcing his wife is pregnant. The two of them then stood there discussing scans and stuff so I muttered something about needing to do something and left them to it in my office before I burst into tears. Sigh....

[mercator]

helter congratulations - nice to hear some good news. Hope all will be well with the 12 week scan.

coconut good luck with the house move.

sue thinking of you today for your scan. Hope all goes well!

[Pebbles73]

Yes well done on the scan news Helter and good luck for the next one.

Sue will be thinking of you today and have everything crossed for you.

[BellyD]

Just popping in quickly to say best of luck for today Sue, I will be thinking of you.

[Arianrhod]

sue Lurking for your good news .. :) Best of luck!

[freelancegirl]

Adding my thoughts to all the positive thoughts flying round for Sue!

Pebbles the drugs are winging their way to you, so do look out for them. Can't believe that someone else in your workplace is having a baby/up the duff! What IS it with these people...?! It's every month it seems.

Coconut great news about having a date for exchange!! Actually we have some news, finally, about our place too. Our mortgage has been agreed so hopefully we too will soon have a date for exchange and completion. We are in complete limbo at the moment - sitting here surrounded by boxes and just waiting for news about things moving forward.

[suemays]

Thanks everyone, I have got my appointment at 6.30pm so trying to keep busy today to take my mind off of it!