TTC/Pregnancy on Prednisolone or similar part 5

[suemays]

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 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

lisa I was prescribed clomid by St Mary's for weak LP, basically had spotting for 5 days before AF arrived. Super ov girls will know it can take a few cycles to get the level of meds right, but got a bfp on 2nd cycle but went on to mc later :( Good luck with getting the answers you need.

Big thanks to all those for updating the list and for amusing kiwi and tossing banter :)

belly thanks I have read that but I would have to see a fertility specialist for that as I doubt my GP would prescribe clomid, I've tried all the natural stuff so would just like to know if there is something else

Lisacn it can get very frustrating, can't it? I remember trying to persuade my local, NHS recurrent miscarriage clinic that steroids were worth a try given my immune issues - no chance, not budging, it's just your age. Nowhere in the whole country I live in offering steroid treatment, hence trips to London and giant credit card bill. I do think you should try a last appointment before giving up on them though.
Have gone to bed, bump is prickly and sore so lying still and waiting for it to pass.
I'll alter the list a bit when not on phone, I'm just 26 weeks today.

Lisa unfortunately I think you will have to pay privately to get to see a fertility specialist. You are lucky you have managed to get this far on the NHS (not lucky to have the miscarriages though) as most of us on here have had to pay privately which we can't really afford! The NHS will only go so far as will always look for the cheapest way to treat you which may not always be the best. I have seen so called specialists on the NHS who contradicted each other, were really rude and were not interested in helping me but saw me just as a number which is why I paid to go private. It really is the only way you can guarantee the best treatment tailor made to you rather than a plan that is given to everyone. I agree that by paying NI contributions you should be entitled to the best treatment but unfortunately that does not hold true in the UK anymore - don't forget the NHS is stretched to the max and miscarriages are not seen as a life threatening illness. No doubt there are cancer patients on the NHS who feel they are not being treated fairly either.

As I said earlier, Dr S put me on the superov plan to regulate my cycles as there was not other medication for me to use. It uses letrozole which is similar to Clomid.

You could try getting referred to St Marys on the NHS if you have not been down that route but I had my bad experience there and the waiting list is long. As far as I know St Marys and St Heliers are the only recurrent miscarriage clinics available on the NHS.

Have you tried acupuncture as that helps regulate your cycle?

I know it's an awful time but don't give up!

Just updating Iggi - taking her down by two days as she had gained more than she needed :) and also adding a day to everyone else. Hopeful should have an accurate date today too. Good luck with the scan! Anyone else, please add/update. Am on a shoot all day so unlikely to be lurking until... but you never know as there can be a lot of waiting around!

Weds 22nd Feb

BFP
3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 37+4 Due 10/03/12
Digitalgirl - High NKC - BFP cycle#2 32+2 Due 16/04/12 AN appt 6/03/12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 29+2
Comedy - V High NKC - BFP cycle#2 ? 26+5 C section booked: 14/5/12

2nd Trimester
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 26+0 Next scan March
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3 - 25.5
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. BFP#1 18+1 Next scan TBC (20 weeks at Epsom General)
Cheerfulcharlie - V High NKC, MTHFR/TTC#1/ (metformin, intralipids, no pred). 18+0 Next Scan 6/03/12
batteryhen - High NKC, factor v leiden. TTC#1 BFP cycle 3. 14+6 next scan at 16 weeks.
coleyoz - V High NKC. TTC #2, BFP cycle2, 14+3, Nuchal scan TBC

1st Trimester
Hopefulfor2nd - High NKC - TTC#2. Next scan TBC - add dates for Hopeful
Mercator - V High NKC, TTC#2. 9+5, next scan 23/2/12
dunnit - V High NKC, on Pred, IVIG, prog and Clexane. 8+6 next scan?
PQ77 - V High NKC TTC #2 (BFP cycle one but mc) 4.1

TTC
Waiting to test
buster76 -V High NKC, Factor V Leiden.
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2
BellyD - V High NKC - TTC#?
Suemays - V High NKC, TTC #2. Superov cycle 2. Testing on 1st March

Waiting to ovulate
Cherrycheeks - V high NKC, TTC#2
lisacn - high NKC TTC#1
Snoopygirl - V High NKC TTC, cycle 4, Super Ov Cycle 1 testing approx 9/3
Havingkittens - Upgraded from High to V High NKC TTC #1 1st cycle Super Ov
Pebbles - High NKC, PCOS - TTC#1 super ov cycle 1 (post IVF - 1 chemical, 1 mc) follice scan 15/02/12
eurochick - High NKC, superovulation cycle 3, pred cycle 3,

WTTC
ScooterChaser - V High NKC - TTC#2 -awaiting follow up appointment
ChoccyPud - V High NKC - TTC#1 from March
Lemonsherbet - awaiting results
Breezyweezy - V High NKC - TTC#1
AandRmum - High NKC
Cornflakes30 - V High NKC, underactive thyroid
picolina - V High NKC
duggs1976 - High/V High NKC - TTC #1 - due to start IVF
Willitbe - High NKC TTC #? Steroid prescription from GP

Just to add to what sue says there is also a recurrent miscarraige clinic at Guy's & St Thomas' hospital - where i am. They don't subscribe to steriod/immunological treatment and will only offer the PROMISE trial (progesterone and aspirin - and you may be in the placebo group) and the tlc approach; ie regular scans and trying to be nice to you!

lisa I can see now why you can't get any advice over the phone; medication to address a short LP will need to talked through face to face with a Dr (as the drugs involved can result in Octomom if unchecked!). Not necessarily RMC consultant but any fertility specialist at any hospital with a womens' services department - though of course you know that, I guess the question is where and who and how. I really feel for you as I now remember that you had the terrible consultation a few weeks ago.

digi - got a call at 9pm last night from the EPU nurse to say that my hcg had gone from 84 on Sunday to 254 yesterday (literally minutes after calling DH at work and moaning at him about how useless everything was because no one had called me ). So all on track for 4.1 weeks but I am not putting too much store in this as I had perfect hcg levels with one of my mmc right up until it was diagnosed at 10 weeks.

free - how was Pilates? I do hope you liked it, I love Ellie. Sounds like you have lots of good advice about exercise too sue!

choccy I think BUPA get sniffy about 12 months after the event so you should still be well within the time frame. With my mc I knew before I saw Mr S (as I had had a negative preg test) so I had an approval number by the time of the appointment. But I don't think you need to "reset" anything, your coverage should still just tick along. From memory (this is going back to 2008 now) they might not cover cost of diagnosing mc - eg serial hcg tests - but will cover the treatment - eg Mr S's consult. Make sure you have your thick emotional armour on before you call (I have cried many a time on the phone to BUPA!).

Pilates was fab thanks PQ! It wasn't Ellie who taught it but she was there at beginning. It was very relaxing. I am not usually good at relaxing type exercise but I think I really enjoyed it. It was odd being in a room full of pregnant women - I felt a bit like an impostor. Until I caught site of myself in the mirror and then i felt like a bit of an elephant. I am hoping that as I was at the edge of the mirror my reflection was somewhat stretched :)

Great news on the HCG too! That is moving very strongly in the right directly. When mine was tested at 4.1 (at the clinic in California) I think it was 254 exactly as well! I know it is the increasing that matters not the number but they are good numbers and a good increase. So good signs all round. My progesterone levels were on the high side too - so I told them about the pessaries - but that doesn't seem to be an issue.

Thanks for today's list free. Hope the shoot isn't too exhausting for you.

Re: nhs vs private, I think the issue is that the nhs are bound by NICE guidelines and cannot offer treatment, even if known to help, if it's not been approved. I was told that clomid has recently been changed from a drug to try if cycles are irregular to it only being prescribed if you aren't ovulating at all (or maybe only have two periods a year). Progesterone isn't something that many doctors are willing to prescribe because of the research that shows it can't help prevent a miscarriage. The problem with NICE basing their decisions on research like this is that it doesn't take into account that the women being prescribed progesterone in these trials may not have necessarily had low progesterone or luteal phase problems - so of course progesterone supplements wouldn't help.

I think my nhs consultant at the Whittington really wanted to help me - but was unable to offer steroids as it just wasn't something they could justify. She was very supportive of my decision to seek private treatment and asked me to keep her informed with my progress. When this baby is born I'll be writing her a letter to let her know how it all went.

Lisa If you think you have a short lp (is it less than 10 days?) then your best bet - on the nhs - is to ask to be referred to an endocrinologist (sp?). They are hormone specialists. So their interest will lie in getting your hormones balanced rather than fertility. But it all helps. For me, one of my problems was my long cycles - I even had a long lp (15-16 days), but it just took my body ages to ovulate. No nhs doctor would do anything about it because as far as they were concerned I was still ovulating I just had less opportunities to conceive per year than the average ttc'er. Acupuncture helped me to a degree, and I even had some very potent Chinese herbs which helped me ovulate this cycle - so I owe my acupuncturist a lot!
I have also tried Agnus Castus - which I had in conjunction with acupuncture and it did help to regulate my cycles. But I still miscarried on the cycle I conceived with AC so I decided to stop it.

I'm not lucky to be seen on the NHS I speak to lots of women in our position who are being treated on the NHS up and sown the country, the joy of this country is the postcode lottery but I certainly don't see that as luck and I'm surprised some of you do. I don't expect to be diagnosed over the phone I would just like to be advised who is the best person to help me so I can make the right appointment to take the matter further. But to be honest I think I'm going to stick with babycentre as I feel quite judged and looked down upon by this place

good Luck Hopeful for scan today!

buster and ari are you testing soon?

PQ great news on your hcg going in right direction!

I am off to play tennis in a bit. So hopefully burn off bit more blubber!

Hello all, blimey its took me all morning to catch up on all the news!
Nice news pq
Bit short of BFP this month.

Well this have been the most weird AF ever. A week late, bleeding but no actual period pain until 3 days later. Now still bleeding nearly a week later What the?!! Went to the GPs to have LH,FSH and E2 done for day 1-3 as advised by Louise. Wasnt even sure if it was day 1 or not!?
Anyway LH 4.1, FSH 3.7, OESTRADIOL 695. Which I think are ok?! Booked in for day 21 blood test too.
All very frustrating
Think this month I will only start the steroids at a positive opk.

I must be an alcohol dependent too free I better cut down!

xx

Morning ladies, man does this thread move fast!

Adding to the weight issue, I realised this morning I've put on a stone and a half since starting this TTC/MC 'journey' almost 2 years ago, and am feeling decidedly blobby :(

buster following the sage words of a few of the ladies here I started taking the pred from 3DPO, just in case it was interfering with OV. This is only the second month of trying it, so I don't know whether it's made a difference or not, but it puts my mind at rest a bit.

snoopy testing I guess next Tuesday, that will be 12DPO but I dunno, I just don't get the feeling it's worked this month so not holding my breath. Not being pessimistic, I'm just not getting any of the feelings I always have previously by this stage (6DPO today) all the other times I got pg.

Good luck to hopeful for your scan today, and great news on the escalating hCG PQ!

/waves to all

lisa sorry to hear you feel like that.

I have only found everyone on here to be sympathetic and full of advice when I need it. I think people are just trying to give you honest advice. I wouldn't know half of what I know now to help me on my way without these ladies. We are all in the same boat albeit at different stages and I'm sure no one is judging you.
If you feel you are more comfortable with bc board that's fine. I hope you get somewhere with all this and wish you luck x

lisa i for one have no other choice but NHS, does that mean for me i have to put up with bad cust serv, wrong info and people who cant be bothered with helping, i experienced all of this and i have only been dealing with them for 1 year, its shocking , so maybe i'm kidding myself as well. My mum was trying to convince me to move back to oz and do all this over there, its crazy isnt it, things really need to change here

Well I'm here to make u all feel a million times better about ur weight, like supermodels infact !! I got weighed last night , last time I weighed myself on these same scales was in may 2011 so please don't judge me too much but now at almost 38 weeks I have gained ....... 2st 9lbs !!!! Fat cow alert !!!!! I was a total fitness freak before (up to may 2011) when I started on the roids and then just did no exercise at all so suppose that and the baby are to blame for some of it but 2.9stone... REALLY !!! And everyone says I'm not even big ????? They can't see my backside tho eh, honestly believe 2st of it is there !!!

stogan don't feel badly, when I was pg with DD I actually stopped monitoring my weight after I saw I'd gained the same as you, and that was only about three-quarters of the way through my pregnancy! I never figured out why I piled on the weight, as I didn't eat a huge deal more than I usually did, I'm veggie as I mentioned (although I did have an early-pregnancy cheese fetish which I now blame my DD's own love of cheese on!), ok I did stop exercising but still ... I really ended up huge, and at only 5'3" it really showed. I couldn't even blame it on a big baby, as when she was born DD was only 7lb 1oz. My midwife at the time told me not to worry about it, that some ladies just do "bloom" more than others!

And even though I ended up unable to breastfeed, the weight did all come back off within I think 4 or 5 months of DD being born, so other than being utterly horrified at photographs of myself (and refusing pretty much to look in mirrors!), there was no lasting damage :) So take heart!!

Aw thank u ari I had no idea I had gained that much and to be fair I'm not too bothered as I don't look like I've put that much on the thing that bothers me is we have booked a beach holiday in August and I REALLY want the weight off for that. I'm not vain in the slightest I just know I won't be able to afford new bigger holiday clothes so need to fit back into my old ones ha ha !!

Well I didn't make any actual effort to lose weight after DD was born (other than being on constant baby-watch, as I was on my own back then looking after newborn baby and working full-time after she was 3 months old!), so if you did some gentle exercise once you're back to having enough energy :) I'm sure you won't have any problems losing it by August. I totally understand what you mean about needing to fit back into old clothes, I need that now and I'm not even pregnant!!

stogan don't worry about it. You have a good 5 months after to get down a bit.
You'll no doubt be walking and pushing that pram alot as well. I was to get DS off to sleep. ( i was obsessed with his sleep). So that will help too.

ari good luck for next week. I would love to see one of us lot going around on the ttc/ov loop at the bottom actually sneak through soon.

lol snoopy .. I was obsessed with DD's sleep too. You know the advice that mama should sleep (during the day) when baby sleeps? My DD wouldn't sleep more than 30 mins at a time, ever, during the day, so that was that out of the window! :)

Yes it would definitely be heartening to see some more BFPs coming along, from some of you SuperOV ladies especially!

God I was lucky with DS. He slept at 10.15am for 1 hr and 12.30 till 3pm when small. Then from about 9 minths up to 2.5yrs he slept from 12.15 to 3pm every single day and ever since has gone to bed at 7pm no probs, even now at 6. I think he just needs lots of sleep like me. You can see how obsessed i am with the times! But if he doesn't get to bed at 7 he's a nightmare behaviour wise.

I put a lot of store in it and always will. Down side is everyone else familywise have always thought we are over the top but they don't see him when he is shattered, MIL always sends him back shattered from hers and I always get the fallout!

Just been having a catch up, it was busy on here yesterday! really made me laugh Free about your dh being the tosser, mine also did some very good tossing last night! . I do love a pancake and always wonder why I end up not having them until pancake day once a year.

Glad to hear things are moving along for you Picolina and how lovely for you to be going back to Oz. I went about seven years ago and completely fell in love with Sydney.

Good luck Ari as snoopy said would be great to see a super ov lady with a big bfp.

Big hello to everyone else.

missed a whole load of posts earlier - I wrote my response on the tube, then posted when I got out.

PQ That's really great news on the HCG count. I know it's still really early days, but these small steps forward are good.

free Mirror was most definitely warped! Am sure you look very neat and tidy! I remember doing ante-natal yoga for the first time and wondering if it was worth the £10 or whatever I was paying. But I then really started looking forward to an evening of 'breathing' and 'lying down'. Am doing yoga again this time - my only time where I can really concentrate on thinking calm serene thoughts about the baby and the birth. Am hoping the breathing exercises will see me through the first couple of hours of contractions as they did last time...but tried it during a particularly painful Braxton Hicks the other day and did eff all!

ari nope DS didn't sleep for long either. By the time I'd made a cup of tea, checked some emails on my phone and thought about closing my eyes he was awake.

stogan I'm pretty sure I've put on more than you. And I know it's because I've overeaten. But you'd be amazed at how the weight can fall off (maybe not straightaway, or maybe it will!) without you even thinking about it. Just think of all those long walks pushing the buggy in the spring sunshine.

buster I've looked at this site and I'd say your levels look pretty good. I'd go one step further and suggest not starting the steroids till 2 days after a positive OPK, as you tend to ovulate the day after a positive OPK, so taking the steroids 2 days ensures you're definitely not delaying ovulation.

Lisa I'm really sorry you feel that way about this thread. I don't think anyone's judging you when they say you're really lucky to be having steroid treatment on the NHS - it's more of a comparison to their own situation, as you are right about the post-code lottery. You've been through an awful lot of heartache and waiting and have had to put up with unsympathetic consultants - so it's understandable that you'd be feeling so upset about what has happened. But I don't think it's fair to say you've been looked down on here. I think I speak for everyone when I say that we only want to help you and have all offered various suggestions for different hospitals, departments that might be more sympathetic to your particular situation. You might feel alone in this, but we've all had to fight for results, referrals, various treatments from our own NHS doctors - some of us have been lucky enough to be able to afford private treatment when we ran out of options with the NHS, but not all of us. We absolutely understand how frustrating this world of recurrent miscarriage is. It shouldn't be. I wish you every luck in your journey, you deserve it, and we're all still here for you.

Lisa I too am upset that you feel that way about this thread and I also echo everything digi says. I've made a fab group of friends on here without whose support and knowledge I've no idea where my head would be right now. I wish you all the luck with your journey.

PQ great numbers. Looking good so far :)

Ari keep thinking positice(!) thoughts

Hello everyone else sorry for lack of personals I'm on iPhone so don't trust co ordination for longer post! X

I think the others have been very generous - I feel a bit cross about what has been said about the thread as there are so many people on here who put alot of time and energy into trying to give advice and support to others. What Digi has said is very true and we have all had long and difficult journeys to get to where we are now and where we are now still isn't great for many people here. There are issues with the NHS and recurrent miscarriage treatment could do with a clear and cohesive approach but we are lucky to live somewhere where there is treatment available and in my experience the NHS really come through for you when you are in an emergency situation.

When I was researching mr s and found this site there were a number of others I looked at which seemed to be people posting about themselves with no one really responding to anyone else. In my opinion this site is a rare thing with ladies genuinely showing care and concern for others and managing to celebrate other people's pregnancies even when it is something they are longing for themselves. If there is a better site I wish anyone luck in finding it.