TTC: Pregnancy on Prednisolone or similar part 7

[ChoccyPud]

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!

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, so sorry it turned out to be another chemical. This must really be doing your head in now!

Fingers tightly crossed for sue and pebbles.

duggs, I'm flabberghasted by the "Act of God" statement. WTF?

I emailed Cheryl and she's sent me my results. They don't look very hopeful, I must say. I almost wish I hadn't asked now!

AMH - 2.04
< 3.07 = V Low - Undetectable fertility

FSH - 12.3
Should be between 3.5-12.5 during follicular stage

LH - 3.2
Should be between 2.4-12.6 during follicular stage

Oestradiol - 44

Should be 46-607 during follicular stage.

pebbles I had run out of preg tests but some arrived this afternoon so I will try and test on Saturday morning. I was needing to pee a lot but that has gone plus so has the tiredness so I don't feel at all pregnant. Really worried the line will be fainter and it will all be over again. I keep looking at the tests I have done for reassurance. I have booked in my 7 week scan plus next set of intrallipids as mr s is away during school half term and is busy. There is no charge to cancel so I thought I would book in early.
london let us know how you get on with the vit d results.

Afternoon all.

I have to say I can't wait until I'm off the Pred. I find I have a developed a pattern of insomnia for a couple of nights when I first start to take it, then that recedes and I start getting a period of sort of heart-racing panic when I can't concentrate and can't stop eating around lunchtime. I just cannot stop packing away the food at the moment! I am now 1lb under my biggest ever weight, which is not huge, but not optimal. I am going to take a break from the pred next month, before we start IVF, so I have 6 weeks from this weekend (assuming AF arrives as expected) to shift it before I pop the next Pred pill. I am going to be on a flipping mission!

I hope those with positives keep getting bigger and fatter ones!

kittens sorry that you are not happy with your results. What do you plan to do now that you have then?

duggs that Act of God thing is disgusting. Some drs really have no idea.

free I'm also glad you started this thread. I have learned so much. It is difficult sometimes to be around a group of people who in many cases fall pregnant as easily as "normal" people (I generally stay away from the buses, etc on here as it is painful to be left behind time after time) but I think that has helped to push me towards taking action and accepting assistance which my hippy-self is naturally rather resistent to.

snoopy if you are still reading, I am thinking of you.

euro, I second the feelings on pred. I don't get insomnia but I do feel that heart-racing anxious feeling and have terrible problems concentrating or focussing. Stupidly hungry and also the heaviest I've ever been.

So, you decided to concede to IVF? I suspect I may end up following the same route. The message from Mr S, via Cheryl was to continue with the meds he's prescribed and discuss my results at my next follicle tracking scan. I am off TTC this month as I have a hysteroscopy booked next week so will start on the new regime of Gonal-F, Tamoxifen, Progynova & Cyclogest (as well as all the other vits, pred etc). I have no idea what the chances of success are on the Super Ovulation programme are. Nor whether IVF will be much more help. Will have to see what Mr S says.

By the way, have you lot heard that peas can have a contraceptive effect due to the fact that they contain oestrogen? I came across this nugget in the conception boards a while back.

kittens our house has been a pea free zone since we read that in my conception book (the one I referred to when we spoke which had the scary stuff about drycleaning fluid)!!

Kittens yes, I have reluctantly come around to the idea of doing it. In part because if we don't start next cycle, due to some work travel over the summer, we probably wouldn't be able to do it until October and that seems a long way off. I hate the idea of it and it feels like failure, but I just want this ttc hell to be over now. I am at the end of cycle 19 now, without so much as a hint of a BFP. Maybe IVF will be helpful diagnostically. Being unexplained is so frustrating.

I wouldn't mind the Pred symptoms if it had helped me to get somewhere, but this is cycle 6 supported by it now and I have got nowhere.

I've heard the thing about peas. And still Mr euro insists on putting them in everything (he is the chef at home and a pea lover). I don't even particularly like them. I try to minimise consumption though, and just have a few in stir fries and stuff, rather than a big pile of them as a side vegetable.

Sue I know what you mean about not feeling pregnant as my tiredness has gone as well but have defo peed a ridiculous ammount of times today! I will have everything crossed for you as well testing Saturday. I need to pop out and throw some more money away on pg tests rather than be like a normal person and accept that it says pregnant get some more tests tonight.

Lol Free can't wait to see you with your baby!!!

Euro it can be hard being around all these people who get pregnant easily coming from somebody else who has never had a natural bfp. I think you are doing the right thing going for it with ivf and that hopefully it will be the answer.

Thanks kittens and am sorry your results weren't what you were hoping for. Seeing like a lot of the others on here you used to get pregnant very easily could you maybe try like sue with the hydroxy and take pred from from bfp or does it feel to risky?

I don't know what to do. Mr S will most likely not agree to any of that. He says he only puts people on Hydroxy who have had a miscarriage since being on the Pred and we all know that he won't consider the possibility that Pred can affect fertility. The fact of the matter is that I am 42 and however much people say to me "Oh but I know someone who had a baby at 42, 45, whatever..." it's not me it's happened to.

I've heard all of this, "I know someone who had x miscarriages and they have a lovely baby now." "I know someone who had a termination for chromosome abnormalities and they have a lovely baby now" (not me, I followed my first miscarriage with two of those, followed by another 3 miscarriages, no lovely baby now). I've been on the pred for over a year and have been TTC for 5 years next month. I need an operation on my foot which I can't have until I've finished banging my head against this brick wall with my TTC "mission". I've had shitty acne since my first pregnancy 5 years ago and can't do anything about that until I'm done TTC. I have facial hair like a middle eastern teenage boy but I can't have laser because of the pred. Everything is on bloody hold. My mum and my granny both started their menopause at my age. It's looking pretty gloomy and I'm really starting to feel like I've had it. Can you tell?

Oh Kittens I'm so sorry you are feeling this crappy. You have put some much work into this, you deserve to get that baby immediately.
About it never being you who has the good news - the thing is it never is you, until it is, iyswim. I hope you get some better news soon, or at least a treatment plan that offers more hope.
Very sorry to hear Ari's news too

Kittens I am not surprised you are feeling like you have had it! Somehow though we always manage and just keep on trying. See what your hysteroscopy shows up and what Mr S says about it all. In the meantime enjoy not taking the pred and have a glass of wine or two.

Kittens that must be really upsetting for you, especially after everything you have been through. Considering that you started the TTC journey and were obviously still able to get pregnant naturally. I hope Mr S has some good news for you when you have the next follicle check. If it doesn't work out are you going to try the IVF route?

Euro it's good that you have made a decision, at least you know what you're doing now. And you are in the right place for advice from people who have also been down the IVF route here! The IVF might be just what you need to make sure you get that sought after BFP and hopefully the steroids will do the rest.

I don't know anything about peas but I was following something of an oestrogen reducing diet when I was Ms Gym Bunny, this involved cruciferous veg and low carbing. I was less strict with this when started casually TTC though and did get pregnant after three months of 'hitting and hoping' at the right time of the month.

On the subject of buses, Euro I found when I was miscarrying previously I was fascinated by the bus threads rather than avoiding them. I couldn't believe it could be so easy for people to get pregnant yet stay pregnant and I was weirdly obsessed by seeing how many had a miscarriage. Incidentally there were always a good handful of people that fell off the bus. I don't know how it made me feel - upset, weirdly vindicated, not alone, sad for them... a whole load of things.

Well done for keeping Clear Blue et al in business Sue and Pebbles! Hope there is continuing good news for you. Am also itching for you to both be put on the 1st trimester list...I remember being terrified to be up there myself so was glad when Digi or someone else did it for me. I seem to be sole updater of the list at the moment though! I am getting reluctant to do it as I know it can be upsetting for some people who are not climbing up it at the moment, but I also think that it is good to have and great to see the progress of the group in total - for an idea of success rates, of stats, of hope for the future... As overall, considering we are a bunch of people who have come to this treatment as we have a variety of issues between us (autoimmune issues, recurrent miscarriage, problems getting pregnant, age not on all our sides...) we are as a group doing quite well. Duggs stats were always good with that too!

Scan for me tomorrow morning. Agggh! First time I have seen in there since 20 weeks. That's a whole 11 weeks ago [terrified emoticon]

Hi newbie here and unfortantly not a take home baby yet one of the unlucky 15% with dr s
About me, 7 chemicals all natural never seen a heartbeat working up courage to try again with intripids on hydroxy as well this time will take 40mg preg at bfp 25mg from ov
Nice to read about others helps to fill not so alone lovely to see some happy ending xx

Hey Gransol! Welcome to the thread. So sorry to hear what you have been through, but yes you are in the right place for people who can empathise. Quite a few of us are on hydroxy now. I am 31 weeks pregnant (5th pregnancy altogether, no take home baby as yet) and was on the same combination of meds that you will be. I hope that helps a little bit. And yes, we have four babies since starting this thread! And two of the girls here already have Pred Babies. Do stick around with us, we all find it's a great support having people who can relate to what we're going through.

Hi gransol good to have u! Can I ask how many of your chemicals have u had since being on dr s programme?

Hi everyone. I have been lurking but not posting. Fingers crossed for Pebbles and Sue and sorry to hear about another likely chemical Ari, very frustrating for you.

Kittens - I don't blame you for feeling down. Hope Dr S has some suggestions for you when you next see him.

Free - you make me chuckle obsessing over the style of movements :-) I also have absolutely no childcare experience either. I've never changed a nappy and not really been around kids or babies much at all in my life. I am trying to compensate by reading a lot of parenting and baby books. Well, I have bought them at least, not really had much time to read them yet.

I had a fetal doppler scan yesterday on the 'big' machine. All is looking good and measuring pretty perfectly to dates which was a relief since my doc has been banging on about me being at risk of have a huge 'sugar baby' due to my PCOS and susceptibility to insulin resistance. I've been monitoring my blood sugar levels 4 x a day, keeping a food diary and on a low GI diet so it looks like it's been working (if there was a problem to start with anyway, which I'm slightly suspicious there wasn't anyway but it's probably meant I've not put as much weight on as I could have done so I am not complaining too much).

Hope all the new mummies are having fun with their little ones.

Welcome - gransol - stick around!

gransol welcome to the thread, I hope you find it as much support as the rest of us. I have found so much info on here from the other ladies who understand 100% what you are going through.

kittens you are entitled to feel this way but please don't give up yet. I know we all hear of stories of older women having babies but maybe they are the ones who don't give up. It's hard when there are lots of bfp news on here and in 'real life' and it's not you. It would be great if we could look into a crystal ball and see if it's worth the heartache or not. I still think you have time left at the age of 42 so try not to panic yet, it just depends how much more you can take. Doctors are not alway rht as they are looking at your blood results on an average basis.

Morning again,

Right low AMH - sorry can't scroll back up - I would take that as the sign to bring in the big guns, that is what we did. My AMH is so low I can't even talk about it and it being diagnosed was the lowest point of my entire journey. What is indicates is that you need to crack on. My blogpost on it is here thebarrenyears.wordpress.com/2012/01/03/amh/
What we did was go to an IVF clinic & start that ball as we saw it that we were on a timescale.

Pebbles - I have got on OK at hammersmith in answer to your q a load of pages back. I think the no follow up may be an NHS thing as CRGH never followed up with me after our cycle there. I think Mr Lavery is ace, although our last consultation where I was insistant on having another go & he wasn't so positive I could see how people could not always thing he is so lovely. Also phone up the EPU unit I emailed the antenatel clinic in a panic yesterday that I wasn't being picked up for early scans, had another scan yesterday (all good) & they said that if I get anxious to just call again & they will scan me at any point as my level of anxiety was not healthy lol. I think the visable shaking as I walked in scared her!

Not sure what else I have missed - Vit D seems to be the next big thing I reckon but then they said that about fish oils & they seem to not be mentioned so much now.

Fingers crossed for bfps to stay that way & hugs & sympathy for the chemicals xx

Afternoon all. Did you see the brief mention of this on BBC Breakfast this morning?
www.bbc.co.uk/news/uk-scotland-18164858

It is another link between pregnancy and autoimmune issues.

Oh kittens I guess the fact is you've been on his treatment for long enough so you either have to come off the steroids soon (try IVF) or move onto something else.. do you think that might be pressurising him a little ?

I saw Jane Knight at Z West this morning. Lovely lady. She said some really poinigent things and I am glad I went I shall be returning. Next week in fact.

I also got the first set of results back from Chicago. (So quick). From what I can decipher.. my NK assay panel all seems within limits.. some even low. They even do a test to see how well intrallipids and IVIG work against the nk cells. My test seems to show the following :

NK assay:
50:1 - 11.2% (range 10 - 40)
25:1 - 7.0% ( range 5 - 30)
12.5 :1 -3.8% (range 3 - 20)

The intrallipids bought the range from 11.2% down to 9.7% and IVIG bought them down to 6.2%.

Says to me intrallipids work a little bit and IVIG works even harder..however it also seems to me I don't even need either as I am bottom of the range anyway?

The rest of the tests showed I was higer end of range but still within ranges.

CD3 - 82.7% was higher end of range (range 60 - 85) PAN T cells
CD19 - 5.4% OK (range 2 - 12) B CELLS
CD56 - 11.6 was higher end of range (2 to 12) NK CELLS

So these tests show I am at the higher end of the scale even after being on steroids since September.. ahhh..but I guess I have been off them a few weeks but tese tests were done 21 May only a week or so after my tapering had ended.

Anyway I am no Dr so I am second guessing what all this means.

Dr S tests last August show :

CD 69 - CD 56 - CD 16
NATURAL KILLER CELLS COUNT
8.8% (range less than 10%)

ACTIVATION MARKER OF NATURAL KILLER CELLS
total nk CD69 count 1.79

It is quite hard to find references to the Dr S ranges online and nothing I can see in Dr Beer book ? Not sure how or if they interrelate.

I have more things to come back.. the hidden infection and the semen culture antibodies,, DQ alpha compatiability and the LAD (partners antibodies) and sperm DNA fragmentation tests. I doubt anything will come up but it does seem to me that something else might be wrong.

Will keep you updated for those ladies intersted in further testing. x

Interesting duggs. Thanks for updating us. Those look like the results I have seen on fertility friends before. I hope these tests get you some answers.

Thanks for posting that link to your blog helterskelter. And to sue for your words of encouragement. And to everyone else for your sympathy (and patience with my ranting!).

I was going to phone Louise today but I don't think she works on Fridays. Last time I spoke to her, duggs, I mentioned my concern at having been on the pred so long and she said that I should be ok as I've had a couple of breaks - one for 2 months, one for a month and then there will be this cycle. I still don't like the thought of trying for several more months/years on it. I guess I will just have to wait and see what they say when I go back for my scan. Which, unless I have another stupidly long cycle will be around 22nd June. Last time he told me not to worry about my AMH as the rest of the results were ok. But this time they don't look great to me. This will be my 4th SO Cycle. The first I only had one follicle, the second he saw 3 but they were all 12mm so who knows if they matured or just disintegrated, the third I ovulated on CD24 and had a subsequent 10 day luteal phase but not much SWI (twice on the relevant day but no "run up") as I wasn't expecting to ovulate that late.

I was telling my counselor about when I was a kid and used to spend time on the beach in San Diego in summer. How the giant waves came and knocked me off my feet and I would feel like I was drowning under them, and then they would recede and I'd surface and be able to breathe. Just as I thought I was ok and back on my feet, another one would come and wash over me and pull me under again. That's a bit like how I've felt for the past few years!

Duggs, it's great that Zita West have given you a bit more hope. I think I may think about going to them if it comes to IVF. Pretty scared to take the £8k gamble on Array CGH testing like you did, although looking at her site it says it you tick one of the 4 boxes she states it would be advisable and I tick 3 out of the 4 of them!

well kittens the £8k was made up of about £1k on intrallipids and clexane and our immunology drugs for the cycle, £4k for IVF, £1k for IVF drugs and about £2k for the CGH bit so all in all it adds up.

Thing is though - if you are stuggling producing the eggs then the one thing that will help are the IVF drugs. Whatever is in there has to come out and then putting DP sperm in and putting back is going to be your quickest and more informative route. Just need to damn immunology treatment not to fail.

So many boxes to tick and so stressful.

I guess you could give it a shot this summer with the view if it doesn't work beause of a) bad egg response or b) immunology treatment failed.. then you could decide to kick back and see what happens naturally and do immunology treatment if and when you get a natural BFP? Or else set yourself a realistic goal after IVF tht you would be prepared to stay on steriods form ovulation for. End of the year 45th birthday ? I don't know. hideous thoughts I know but it is the endlessness that is so exhausting isn't it.

My friend is just starting IVF and she turns 45 in september. She has a son conceived "accidentially" at 40 yrs old.
who knows...

The one good thing about IVF is that if all goes well, you get a reserve of frosties to use in case the situation declines in future. It's something that has helped us come to our decision because we would ideally like more than one and even if I got pg tomorrow, I would be 2-3 years older when we would be trying for no. 2 and who know what would have happened to my hormones in the meantime. And if it doesn't work straight away, it gives us more than one go with relatively young eggs. It's something to think about kittens. It sort of freezes your fertility before it naturally declines.

(Can you tell I have had to talk myself into it?)

Euro I think you make a good point about the having frostie reserve for the future. I think I am going to look to get a fresh set of immunes for RMCs done somewhere that also does IVF with an eye to taking this route sooner rather than later. Or at least find out whether this would be better for me than wasting my forties trying naturally until it is too late.

The Chicago immunes seem so detailed. I wonder how the tests we have had done in this country under Mr S relate. They read so differently. Thanks for posting this Duggs it is very interesting.

Hi ya
In answer to duggs question I've had chemical one under dr s in march
I had three then went to a local gyni carried out test nothing wrong tried cycogest and cleaxane two more chemicals and was referred to st marys no luck with them more test still nothing wrong 1more chemical then went to see dr s high nk cell 69 think 1.24 so he said not overly high and very treatable but had another chemical lucky fell first month if steroids as be reading that they can mess up cycles really not want that
Thanks for the welcomes I'll keep u update next time still need courage to try again although positive stories help, good luck to all