TTC/ pregnancy on Prednisolone or similar

[freelancegirl]

I am not sure there are enough people here to start a thread but have been chatting on one on the pregnancy boards and was wondering if I could find any fellow ttc'ers on Prednisolone or similar?

I have just received a diagnosis of very high NK cells. It was a bit of a shock actually as it turns out I have some of the highest levels - 3.79 when anything over 1.8 is considered 'very high'.

Am trawling through Dr Beer's book and Dr Google and trying to found out more. I have been recommended 25mg prednisoline steroids for two weeks starting with ovulation, increasing to 40mg if/when BFP and then Intralipids Cyclogest too. I still have 13 days until I pop my first Pred.

There now just seem like so many hurdles - actually getting pregnant being the first one. I was prepared for high NK cells as I have high thyroid antibodies but it was shocking to be in the top 5% of people treated at the clinic. I am not sure if that gives me much less of a chance of being successful.

It would be great to hear from anyone else who is undergoing treatment and of course also if you've had successful treatment.

Yeah I think I must have physically jolted with surprise when she asked me! I would have been less surprised had someone asked me if I had thought about either a ERPC or a 'natural' in the case of it all going wrong again

Maybe we should all get First Catch Your Rabbit tattooed on our foreheads and that will be how we recognise a 'one of us' in public :)

Your mum's radical suggestion was put in place by me quite accidentally. After I got the negatives on 11dpo and 12dpo I went to Brighton for the weekend with no sticks on me. As soon as I got back on Monday afternoon 15dpo and my stash of tests was when I got the faint positive. Go away without any sticks! Of course I could have just bought more but I didn't get around to it.

Update from me. I just got a call back from Annabella. She said that the Dr was happy to give me one more month (ie. opportunity to try on 5 cycles) and then I should have 2 months break. So, not too radical I suppose. If it does turn out that I'm away during the crucial days next month, which is looking likely, then maybe I will take the 2 month break early. Still, we'll see where we're at in the meantime.

Oh, that's good to know I guess. I think that is a good plan too - if you know you definitely won't be able to SWI properly just take the two months break early! It will go really quickly I am sure and you can use the time to get some nice things done so you are truly ready for it again. Of course it may happen this time anyway. I like to think that your body will already have a nice stash of NK calming Pred to work from too. That's the worry with me getting the BFP first month on Pred, that my NK cells are not quite dampened yet!

euro you can tell me to piss off if you've already thought of this but have tried charting your temps? Just in case you think you're well timing swi but actually might be ovulating a few days later/earlier than you thought. If you get the hang of it temp charting is more reliable than opk's or ewcm.

kittens pleased you're getting another cycle's worth of pred. Fingers crossed you use it this cycle instead.

freelance odd question to ask someone pregnant with what they hope to be their first child. Natural or cs? As in too posh to push? You don't get a choice on the nhs. But I suppose it's a more positive outlook than erpc or medical?

Jealous of everyone's holiday.

digi I would never tell you to piss off! I am learning so much on this thread!

I have been temping for the last 5 cycles. My charts are described as "textbook" by my acupuncturist (who is the only person who has looked at them as I am still waiting for my gynae appointment although from what I hear many aren't interested anyway). That just makes it all the more frustrating. I have a short-end-of-normal luteal phase (12 days) and my progesterone could be a bit higher (was high enough to confirm of but not optimal according to needles lady) but neither of those should mean no pregnancy, plus other bloods are fine, hubby's SA fine. Which is why I am lurking around this thread looking for reasons why I am not duffed yet!

I've used OPKs too but I am weaning myself off them now as I prefer charting (and my cycles are fairly regular so I don't need warning to hit ov).

euro is there a possibilty that you have been pregnant in the past - not a cp but maybe got to 6 weeks? I say this because Mr S told me it's really rare for him to find a woman with high nk cells who has never been pregnant. It's the first pregnancy that triggers the nk cells to raise. He says he often finds that women with high nkc who say they've never been pregnant often once their husbands are out of earshot admit to a previous termination or mc.
But to answer your other question mr s does test for everything not just nk cells. Although as far as I'm aware he is not a conception specialist - he is a mc and pcos expert. So if conceiving is a problem and it's not due to pcos then there may be other fertility specialists out there which you'd be better off seeing. If you are over 35 then it's definitely worth speaking to a few different clinics. The ARGC is very well regarded and seems to have one of the highest success rates for ivf (not saying you need ivf) - they may be able to advise you what tests they do that the nhs haven't done yet.

I got my bottle of murky herbal liquid last night and have been quaffing it as per the instructions. Finally beginning to feel some twinges so I think it's doing the trick. Won't hold my breath for anything immediate but at least I'm feeling something. So current outlook is - keep on swi and hopefully avoid expensive super ov by getting a bfp. If no bfp then at least I won't have to wait another seven weeks for an egg because I'll be doing super ov.

Taking pred seems to be the least of my worries right now.

Such a hard slog isn't it euro, as we are all to a certain extent self-diagnosing to find the right specialist who can then find out a reason why it's not working out for us. It's almost like we have to work out what might be the issue ourselves first! Thank god we are all informed patients and do so as there must be thousands of women who don't have the wherewithal to do all this research themselves. Exhausting though, I realise. Digi is right about Mr S saying NK cells are usually when someone has had one pregnancy. My first pregnancy was when I was 19 and had a termination. However the weird thing about this was they thought what had been found afterwards was very very small. So I am wondering if it was a mmc, but I don't know for sure. I had a definite mc the following year but I was very sick with a thyroid condition at the time. I feel awful that it was probably the termination that kicked in the NK cells but really I wouldn't have wanted a child at 19 either. And no point dwelling on these things. Technically however I am not a recurrent miscarrier with so far apart between the possible and definite and the definite one in March so it was only instinct that sent me to Mr S and led to my diagnosis.

Digi well done on getting the murky liquid! Good news that there is ovary twanging going down already too. Would be handy not to go down the Super Expensive Super Ovulation route definitely. DH and I had a row tonight about how much it is all going to cost if (and that's a big IF of course) I have to have several scans over the next few weeks and intralipids. It is quite dauntingly expensive and there's a lot of tension involved!

I found charting really worked well for me last month but I realise I was lucky. Am constant knicker checking though and realising simultaneously how futile that is too as I didn't start to bleed last time until a good 6 weeks after the baby had supposedly died anyway!

Digi I didn't know that about a previous pregnancy. To the best of my knowledge I have never been pregnant before but through my 20s my cycles varied from three to six weeks so who knows. I never got on with hormonal contraception so relied on condoms and the odd period of using withdrawal, so it is possible that there was an early miscarriage in there somewhere. I am pretty sure that I was pregnant for about a week last year although I didn't realise it at the time (they were blissfully ignorant days of no knowledge of implantation bleeding or that dizziness could be an early PG sign). By the time I cottoned on and bought a PG test, my period had arrived.

I didn't realise Mr S specialised in PCOS too. I thought that was going to be the problem because I was diagnosed with PCOS when I was 17 (hence the irregular cycles). But my blood tests a couple of months ago were not indicative of PCOS at all.

I am 35 so have no time to waste (hence my impatience).

freelance you're absolutely right about trying to self-diagnose to work out where to go. That's exactly what I am doing at the moment while I wait to see the elusive NHS gynae who might be able to give me some guidance (if she is any good...).

euro my blood tests rules out pcos too - but my periods are irregular (37-50 days) and a scan has shown my ovaries to have a polycystic appearance. Therefore I have pcos. But not every gynae would agree because my hormone levels are within normal range and I'm not obese nor have teenage acne. I'm hesitant to say you have it if you have regular periods - but if you've been diagnosed in the past and you think your progesterone level isn't great then I would say your best bet is to find a pcos expert/endocrinologist who can advise on whether progesterone supplements (cyclogest) will help.
Have you tested at 10/11dpo to see whether you're getting a positive before af arrives? A cp would show up as a faint positive before fading to negative and then af arriving.

I am not a POAS addict but have as an experiment tested early a couple of cycles to see if I am getting chem pregs. Nada.

PCOS tends to be a problem as it means no ovulation for lots of women. But I ovulate. And these days have fairly regular periods. I have just been banging on about a low GI diet on another thread. I really think it has helped me. I know you can have PCOS without the bloods indicating it, but I was surprised by the results. I have the facial hair (or rather I did until I spent a fortune on laser hair removal) and insulin resistance. I still get the odd hair but since I've had most of it zapped I have no idea how bad it would be without the zapping. And the insulin resistance is much better than it was. And for years had irregular periods and spots - both better now. I haven't had my ovaries scanned in about 5 years so I am not sure if the cysts are still there. Hopefully the elusive gynae appointment will get the ball rolling for that. When I started TTC I assumed PCOS was the problem. And then I realised my periods are pretty regular, I am ovulating and my bloods didn't indicate PCOS so now I am not so sure. So I am now wondering about other reasons for not getting PG.

Sorry for all the me-centric posts. Thanks for your responses. I have found them v informative!

Annabella just called back to say I could do 2 more cycles before a break, so that's even better. And even better still, my super helpful sweet GP called me to say there was no need for me to drive all the way down to Carshalton to pick up the prescription, he would issue one for me today. All good.

I'm not sure if I'll get a chance to get online whilst I'm away so, apart from popping in later I won't catch up with you again until next week, when I will know whether I am up the duff or not. I reckon I am going to try and be strong and not test until Monday. That way I can enjoy my weekend and if I do feel tired or dizzy or the need to wee several times in one night before monday I'll do a test out there but otherwise assume that my rabbit is still scampering just out of my reach. I don't suppose a few glasses of wine and a bit of runny cheese is going to be make or break at this point as you say.

Euro a low GI diet is really good all round anyway I think. Autoimmune probs are also meant to work better without gluten. It sounds really frustrating what you are going through hon, glad we can be of some help! My good diet has actually gone flying out the window, just had three ginger nuts with a cold glass of milk...

I think digi has a really good point for you re finding a pcos expert/endocrinologist who can advise on whether progesterone supplements (cyclogest) will help. And any other insights they can give.

That's great news Kittens, let's hope it works either this month or in the next couple. A few days in France will do you good too. Don't live too pre-pregnantly... plenty of time for abstaining when you get a BFP :)

Monday is a big day for me too as that is when I will be finding out whether a) there's a baby in the right place and possibly b) whether my body has started to reject it yet. I have to say am absolutely terrified. I have made an acupuncture appointment for the Tuesday so may or may not need it.

Best of luck freelance I will be thinking of you and will check in on Monday night when I get back to see how you got on.

Thanks! It's all scary stuff isn't it.

Yes, best of luck, freelance. I hope all is well.

Hello Ladies

With the PCOS thing, I think different docs interpret things differently. I had my LH:FSH bloods done in Jan over here. I showed the results to Dr S and he said it was nothing to worry about, he see levels far higher and he said he wouldn't even classify it as PCOS. My synae over here said my PCOS was 'very, very active' and probably causing the miscarriages. Actually i have just had the bloods repeated and after 6 months of losing weight, Gi diet and metformin it has all but disappeared. I was told by Dr S though that even if it's not active any more your ovaries will always look polycystic in appearance. I was quite surprised - I thought the cysts would disappear.

KITTENS - I have no idea if this is true or not but I have heard that you're ok on the alcohol until implantation. So you can maybe go for it without too much worrry. It would be a shame to miss out on wine in France.

OK now I need some opinions! I have had a steady cycle of 38/ 39 days since January. I ovulate on CD 24-26. i do OPKs and am quite sure about this. Now I have been having acupuncture for the last 3 weeks (just before last AF) and I feel like I am going to get a positive OPK tomorrow which is CD17. (They have gone almost positive today, just like they normally do before they go totally positive every month). I have also had very strong EWCM since Monday. I'm thrilled my cycles appear to be getting shorter from the acupuncture and I'm stunned it can happen so quickly (assuming I DO get a +ve OPK tomorrow!). However, I had decided NOT to try this month partly due to the fact I had been taking antibiotics earlier this month and partly because my acupuncturist also said give it two more months, but definitely not this month as my energy levels are 'low' and when they are low it makes miscarriage more likely. The problemo is that DH and I thought we were safe on CD 11 to go for it without protection. I'm right aren't I that it would be very very unlikely I could get pregnant from this if my OPK went +ve tomorrow morning? I mean, i would probably ovulate about a day later (CD18) and then that would be almost 7 days really since we DTD. I really don't want to take the meds unless it's necessary. Do you think I will be ok if i just do the FR early test on 8dpo and if by a miracle it was positive, i could always start the meds then? Don't some of the other clinics only start the meds from BFP anyway? What do you think the chance would be of getting preggers from DTD 7 days before - it must be about 1%, if that?

cheerful Although it would be lovely if it was that easy I think it's v unlikely you'll get pg from unprotected sex 7 days before - although I remember one woman on mn saying it had happened to her. She was having her follicles tracked - so if she was on clomid or similar this may have helped make her womb more fertile (more ewcm?) and able to sustain the sperm for longer. But generally 7 days pre-ovulation isn't likely.
If I was in your position I would take steroids from bfp - your nkc weren't 'very high' were they?

free I don't know what to say to help you through the next few days - other than I know what it feels like. Being optimistic or pessimistic won't make the slightest difference to the outcome so I won't tell you how to feel - but if you can at least remain physically calm (are the steroids still making you manic?) then you can sort of glide through the next few days in a haze of bewilderment. Which is better than sheer panic. Today you are pregnant and nothing has happened to make you think otherwise.

kittens great news that you're getting another two cycles worth. I'm also hoping if it comes to it that I'll get another two or even three as the gap between my first and second course is already over 4 weeks.

More ewcm and ov-twanging today. Signs looking hopeful. Just need a temp rise now.

cheerful you're absolutely right that no two doctors seem to agree on anything to do with PCOS. When I was diagnosed 18 years ago, it was considered purely a gynae condition. I learned about the insulin connection through my own reading around the subject and have definitely improved my symptoms as a result of eating a fairly low GI diet. And as it's a syndrome, no two women seem to have the same mix of symptoms, so that makes it all the more difficult!

FWIW, I think your chances are minimal this cycle with a 7 day gap between dtd and ov.

I got the impression digi that they do like you to stop after 6 months, just for a couple of months, to give your body a break from the steroids.

I was thinking about my idea about starting my break early. I think that might be a bad idea as then it would mean i get 4 months of trying, 2 months off and then would still have to stop again after 6 months. Whereas if I just carry on then I may be away next time I ovulate but it will give me another month to try, then 2 months off and 6 months again so it give me at least a month more chance - and let's face it, at my age every month counts. Especially in the worst case scenario of it not working out the first time. Sell, I mean the first time on this treatment anyway. 7th time lucky would be kind of nice!

Not Sell, Well....!

Freelance - good luck for Monday. Sounds like you need an action packed weekend of things to do to keep your mind off it!
Have you done the acupuncture before? I 've onlly recently had it but my acupuncturist says it is particularly good for the first 12 weeks of pregnancy and I definitely plan to have some then.
Glad to hear you all think the 7 day before ov is pretty unlikely. I have a weekend of heavy drinking, spa treatments and hair colouring planned so I can relax into that now!

Euro - when i was first diagnosed with PCOS in 2009 (before i was even thinking of ttc) I was given no hint it was connected with diet or weight. At the time my BMI was probably about 27 - 28 and now I'm really annoyed the gynae I saw back then didn't even mention it might be a good idea to watch my weight or diet or give me any info on it even though I hadn't had an AF for 9 months. He said it was no problem at all and if in the future I ever had problems trying to get pregnant, no issue, all I had to do was go back to him and take some medication. It was only after my miscarriages I realised that actually it could be an issue and all the more I could do something about it myself. I do think with a lot of medical issues it really is a good idea to do your own research. I have to admit I can get a bit carried away on google, but if docs were more reliable with their explanations, then I wouldn't feel the need for it!

Kittens - I didn't realise they made you take a break from the steroids after a ffew months. Do you find yourself picking up bugs / colds etc more easily on them? Don't asthmatics and other people take much higher doses of this prednislone for much longer periods (without the gaps)?

Cheerful that's pretty appalling. Back when I was first diagnosed in 1993, I don't think much was understood about the condition but by 2009, you could buy books on Amazon telling you all about it. Your gynae really had no excuse! And as it's such a common condition one would expect drs to have some clue! It seems to be better now. In fact, I post over on Verity and most of the ladies over there with highish BMIs are told to lose weight as a first step and for some this is enough to bring back their periods or missing ovulation. But it does seem like the NHS uses losing weight to ration treatment to some extent. In some ways this is rational (higher success rates at lower BMIs) but it is really tough on women who are already going through hell.

I agree with you on research. I have learned far more from books & the internet than any dr has ever told me about PCOS!

www.ajog.org/article/0002-9378(95)90498-0/abstract?refissn=0015-0282&refuid=S0015-0282%2809%2901242-4

Further to my googling... I just found this article. If you can't be bothered to read, the upshot is that to minimise miscarriage you should DTD day before or day of ov.

I don't think it's very good for your body to be on the steroids for too long at a time. They can have an effect on blood pressure as well as other things (all listed in the side effects leaflet but I don't have it handy). I would imagine in the case of asthma sufferers etc they weigh up the benefit of the drug over the side effects to give the best quality of life and health. But yes, I did get a throat infection towards the end of the last cycle of steroids so it may have been due to it suppressing my immune system as I very rarely catch any colds or bugs usually.

Morning ladies, wanted to drop in as this is 1st time I have had wifi. Hope to find you all in fine fettle and enjoying your hols if you are away at moment :) Apologies for the long one.

Eurochick glad to hear low GI diet is helping. I got diagnosed 8 years ago after feeling sick pretty much all day every day for 2 years. They thought it was my thyroid which it partly was but was also insulin intolerance. Since following low GI regime haven't felt sick and my periods have become more regular. Will only feel sick, bloated, irritable if I eat over on the dark side for consecutive days regardless of taking metformin. Have you discovered Bergen Soy and Linseed bread, it is great for brekkie/sarnies as slow release and tasty too.
Cheerful your article looks v interesting. Unfussy uterus thing scares the pants off me as we have gotten preg 1st/2nd attempt 7 times, a bit too easy really. We have tried this month already without thinking about that so just going to brace ourselves for whatever may be and hope for the best :{ as due to start pred etc once I get bfp.
Freelance am keeping everything x for you. As Digi says tis impossible not to read into every twinge, lack of twinge during this time. Just keep sane in doing whatever way makes you feel calm. all you can do is draw strength from taking 1 wk at a time and knowing we are all wishing it is a sticky one for you. Lady luck has to be on our side sooner or later and it shall be now goddammit!
Kittens hope you are having fun in sunny France, and partaking in a wee bit of wine and runny cheese. Good luck for Monday x
Digi Stoopid q sorry, what is ewcm? I got Ov twanging too, though confusingly also pink spotting about 4 days prior to that which is also a sign. If not successful this month will def temp chart like you ladies. Are you all seeing accupunturist.? Feel left out :). Can anyone recommend someone in the Essex areas, I live near Stansted.

Sorry for the long missive, just wanted to say hello/bonjour as hadn't posted for a while. Brownie x x