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Conception

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TTC: Pregnancy on Prednisolone or similar part 7

999 replies

ChoccyPud · 17/04/2012 13:58

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

OP posts:
batteryhen · 19/05/2012 15:23

free I am amazed at your stamina! I get to 11pm and think I am doing well! Let alone 2am!
ari I will keep my fingers crossed for you that this is the one for you xx
sue how are you today?

Just a quick post from me - I had to call the MW yesterday. Had sudden onset of low pain - like period pain. I t was quite painful and consistent. MW reassured me, I think it was the baby moving from oneside to the other - and stretching me out in the process. I was worried. And as a consequent of that my irritable Bowel has started today. I was about to put my coat on and go out with DP but spasms started, along with diarrohea and vomiting. Nice. The spasms were so bad I thought I had gone into labour :( Anyhow - I feel better now after having a lie down for a while. As soon as I get worried or stressed my IBS starts.

On a happier note - we have booked a weekend in london soon to watch wicked and have a weekend away before this baby gets here - something to look forward to! also - the more I read about hypnobirthing the more I want to look more into it :)

Abney · 19/05/2012 15:44

Hi all, good luck to Ari Sue. I hope this is it and that you keep your BFP's. Wishing you every success. Good luck to Pebbles and your up coming testing. It is so hard to wait until the date you are 'officially' supposed to test. I have a couple of questions that I need help with. I asked Dr S to put me on fragmin (Jan 2012) which is what I have been on before until they stopped recommending it. Dr S advised back in 2006 that he thought I had a primary antipholisid syndrome but when I went to see him in Jan 2012 he had forgot about it and was glad that I had pointed it out. He then said that if I get pg again then he woud arrange for some blood tests. Would this be the same as the TEG tests? Also if he thinks I have a borderline sticky blood issue why has he not mentioned Clexane? I am assuming this is used to thin your blood but from when TTC or BFP? I strongly believe I have an issue with my blood and also the VNKC issue. I have only had fragmin 3 out of 10 times re MC's (I think) and 2 of thse included low dose pred when I should have actually been taking the higher dose. Also if you are on SO Dr S says when to do the deed but I can see quite a few people testing with OV sticks. When I asked if I should use them he said no there is no point. Does the injection definitely make you ovulate 24 to 36 hrs later? I saw DS Monday at % and then took the injection at about & the same evening and then he said do the deed Tuesday and Wednesday. Well I got an ov stock out Thursday morning and there was a really strong line so I am a bit confused.

Abney · 19/05/2012 16:14

Just a few stories (extracts only) about blood clotting and Clexine and other issues from 2011 I have never been tested in pg for blood thickening issues but I am guessing that if Dr S believes you may have a problem then he may give you a blood test (TEG?) Would I be correct in saying this? The guys on Clexane, how comes you are on it? What is the diff between fragmin and Clexane? Can anyone help?

Story 1
The TEG test is a test to look at blood clotting, more sophisticated than the regular bloodclotting tests. I think that only St Mary's does it in relation to recurrent miscarriages. They do the blood test when pregnant and not pregnant to look for clotting issues. They told me that I have clotting issues only when pregnant, and hence to take the asprin from bfp.

The consultant at st mary's said that it is not advisable to take asprin unless you definitely have a clotting issue as the latest research says it could possibly increase risk of m/c in women who have no clotting issues.

Story 2
A friend of mine had the same problem about 8yrs ago and she was told she needed a progestrone injection as soon as she got bfp. She had it and had her baby.. after 10 miscarriages! She had 2 more chn each time getting the injection.....When she got pregnant the 4th time her doc was off and the stand-in would not give it 2 her, she m/c...but has had her fourth child 2yrs ago ( again had injection)!!!!!!!!I mentioned this 2 my consultant and he dismissed the progestrone injections saying medical evidence did not support it.
Story 3

I had two miscarriages before going for private investigations. Turns out I have some blood clotting issues and was put on clexane and aspirin in third pregnancy. All went well and I have a very heathy baby boy. Am now 24 weeks pregnant with my 2nd.

Story 4
I'm having, so far so good, a healthy pregnancy on clexane after 2 mcs. The dose I'm on is low, it's nothing like what they give people who have a history of DVT or something like that.

Arianrhod · 19/05/2012 16:48

Just a quickie as I'm supposed to be reading The Grinch to DD. abney yes the ovitrelle def makes you ovulate within 36 hours - with me it was almost exactly 36 hours! The OV sticks are no good after as they can pick up hCG - which is what ovitrelle is - if you recall you can use OV sticks to detect pregnancy. So don't bother using them after your ovitrelle shot. I personally use opks and CBFM monitor to monitor what's going on before my scan just in case I'm heading for ovulation before the scan, if you see what I mean.

Thanks to everyone for your positive words, still lurking to see how sue is going today? I decided in the end to wait to call for intralipids till Monday and only then if the line has got darker, but I compromised on the Pred and have taken a 25mg one for now as the DHEA apparently enhances the effect of Pred anyway.

GreenOlives · 19/05/2012 18:18

Well AF has arrived just in time to come on holiday with me Sad Still I'm doing my best to look on the bright side and not let is spoil my hols! At least I can enjoy lots of Wine

I'll try and keep up with what's going on while I'm away but I've promised DH that I'm not going to be posting on MN - it will prob do me good to just chill out and forget. about ttc for a bit!

See you in June ladies, good luck to one & all Smile

ChoccyPud · 19/05/2012 19:25

Ooh Ari ... Fingers crossed for a darker line next time :)

I don't have clotting issues so can't help with those questions except to say that Mr S advised me to take aspirin throughout, so I'm now slightly confused/ concerned about the risk of mc due to taking it. I'll try to remember to ask when I see him next and do some research before I start ttc again.

I seem to have rebooted on schedule - cd 14 today and last night and today I've had loads of ewcm. So relieved. I always worry about whether things will get back to normal after each mc, you never know do you? Still, mini yay going on here!

It's also great timing for going on holiday on Tuesday - chances of getting upduffed by mistake will be pretty low by then. Slightly bigger yay ;)

Waves to all :)

OP posts:
digitalgirl · 19/05/2012 21:30

Lots of sticky vibes for ari and sue

Sorry for the bfn greenolives - as you say now you can enjoy the guilt free boozing on your holiday.

battery gosh, that ibs is a bitch. Hope you're feeling better now. I had it for a while at uni and it flared up a little on taking the iron tablets after F was born so I stopped taking them. Btw I also had quite a bit of crampy pain around the 30 week mark - that's when my braxton hicks stepped up a notch.

free seriously impressed at your 2am hometime - you sure you've stopped taking the pred?

Right - F has finished his post-bath feed so am off to enjoy the remainder of the evening with dh.

suemays · 20/05/2012 08:15

Was at a wedding all day yesterday so didn't have time to post!
ari good news on your whispered bfp, no doubt you feel as shit scared as I do! I am holding out doing another test until Monday am before I go for intrallipids as didn't want to ruin my weekend by analysing different strengths of lines. I am booked in for 11am what time are you in there? I upped the pred dose to 40mg as soon as I got my bfp as want to throw everything at this as early as poss. I know what you mean about worrying about the preds mucking up your next cycle but hopefully this will be the lucky one that makes it.

suemays · 20/05/2012 08:29

Forgot to ask ari but are you taking the progesterone suppositories too? I am doubling up on those as well!
greenolives sorry to hear about the af arriving but fc for next month.
choccy glad to hear you are back on track, I was really pleased to see my monitor working for the first time in six months on this cycles as the preds I am sure stopped it from working.
abney I used my monitor to check for ovulation on the so plan before the scan incase I ovulated early. I wouldn't bother after the ovitrelle as the hcg will show a positive on an opk. I ovd almost 36 hours after too. Apparently you can feel ov more than normal after taking the shot.
I am trying to take it easy over the next few weeks if I get that far. My acupuncturist is a great believer in ladies who have problems holding a pregnancy to relax as much as poss in the early weeks. He told me to not do any exercise, housework or other activity and rest as much as poss. My friend who went through ivf was told the same thing and was not even doing the washing up! Not sure how dh will react to that!

Arianrhod · 20/05/2012 08:35

Actually I don't feel anything about this to be honest sue .. I think it's happened so often now that I just don't want to think about it. For some reason this time I don't have the mad compulsion to POAS every 5 mins and I'm not going to bother with the hCG tests. My EPU don't do them without referral from your GP anyway.

I'm not booked in for intralipids tomorrow; if the line is darker tomorrow then I'll phone and ask to have them Tuesday. Oddly I don't have the feeling of doom and gloom over this one that I did last time .. I don't know if that's because my body has some kind of gut instinct over it or if it's simply as I said earlier, I just don't feel anything about this. I guess I'll get terrified in a few weeks time if I ever get to see anything tangible, like a scan with something there! OH clearly doesn't think anything will come of this one though, because the line wasn't strong and all my non-chemical ones have been a strong line by 12dpo. We'll see.

I really hope this is it for you sue, crossing my fingers v tightly for you!

Arianrhod · 20/05/2012 08:39

Yes sue, I was actually taking the progesterone (400mg) from ovulation to build up the lining but have gone to 800mg now as Mr S said I should do on next BFP. Although of course he doesn't expect me to be viably pregnant now, remember, due to that one high FSH test .. that I still think showed high because of the steroids.

Funnily enough I had just ordered a at-home FSH test on Fri night, I wanted to see if it's come down. I'll keep it, in case this doesn't go anywhere.

duggs1976 · 20/05/2012 09:02

abney I had the TEG test at st Mary's. I also had clexane (like fragmin) for my ivf round. I had to start injections a few days before egg collection and I continued every night with the 40 mg pred until I miscarried. I also was told not to take asprin when TTC by dr raj rai as I can be a mild contraceptive more than anything. I still don't take asprin - a blood thinner is the same as clexane. You have reminded me to ask again for 5th time for my results from st M. They mumbled something last time that meant I was ok but would monitor me if I got pg again. Blaaa blaa. So what are you thinking/ saying re yourself what's your theory?

Abney · 20/05/2012 09:16

Good morning everyone. Ari and Suemays thanks for the advice. That has put my mind at rest.Choccypud have a great holiday.
My mother in law told me yesterday that it was in the paper re intralipids. Something postive.

Duggs this may interest you and give you hope for the future.

Read more: www.dailymail.co.uk/health/article-2145697/IVF-couple-baby-joy-woman-drip-fed-egg-soya-oil-stop-body-destroying-embryos.html#ixzz1vOXpw9hQ

Doctors believe it could help more women achieve their dream of motherhood, with studies showing the concoction has a remarkable success rate at overcoming an immune system problem in which ?killer cells? attack a fertilised embryo.

Can anyone help re Clexane and why it is given?

Abney · 20/05/2012 09:24

Hi Duggs I am thinking that Dr S should as a matter of course test for thickening of blood in early preg. My mum and sister have the factor 5 issue. I don't have it but I think I may have something wrong with my blood. Anyway if I do get pg I am going to have the tests. It is a pain that there are different views re asprin. It is good that you can rule out blood issues re the IVF seen as though you had the Clexane. I will ask Dr S about the difference between Fragmin and Clexane. When can you try again?

Abney · 20/05/2012 09:40

Oh one more thing. If you see a heartbeat at 6-7 weeks and it stops at 8 weeks are we saying that the NKC 'commonly* attack at this point in time in my case anyway? I have lost ones really early ie 5 to 6 weeks which I would put down to implantation issues but the 7 to 8 week ones ie when you see that there is a heartbeat then it is such an obvious pattern. 4 or 5 times I have seen this. I have seen that some people lose them a bit later so again do their killer cells suddenly decide to attack at 10 to 11 weeks or is it that their blood thickens at this point. Who knows but if I was a Dr I would test this. Smile.

Alternatively I have said to my mum that it doesn't feel like I have the right chemicals or whatever to keep the pg going.

Anyway if I do get pg it will be interesting to see if fragmin and the intralipids and the blood tests make a difference to the outcome.

Havingkittens · 20/05/2012 11:36

I read that Daily Mail article a long time ago, when I was trying to find out about NK Cells. I assumed it was referring to intralipids. Is it something different?

sue and ari do either of you have v high NK Cells? As I was in the same boat as you with the strangely drastic change in cycles and fertility obviously the fact that you've both got BFPs whilst not on the steroids has really got me thinking (even more than I already was). I have v high NK Cells though so wondering if it would be a bad idea to wait for BFPS before starting them.

Arianrhod · 20/05/2012 11:45

It is referring to intralipids, yes kittens - it says that about 3/4 of the way down the article I think. Yes I have v high NKCs, I think my activation count was 1.89 if I remember right. And with the last chemical pg in Dec Mr S tested my NKCs again (after I had been on 40mg Pred) and although my activation had come down to borderline High, the total count had shot up to hugely high levels (which is why he then put me on the hydroxy). I have no idea what that means, but it can't be good.

I do know what you mean about the risk but the way I looked at it was, if the steroids are preventing me from even getting pregnant, what's the point in taking them - what's the use in my NKCs being suppressed if there's nothing to suppress them for, IYSWIM. Plus I hope the hydroxy will have gone some way to helping (and in my case the DHEA also, I hope).

I don't know - there's still an enormous chance this will be just another chemical, I'm certainly not getting any pregnancy symptoms other than tender bbs (not massively sore, just tender) but I have no way of telling right now. Yet another bl**dy waiting game. :(

CareBear1 · 20/05/2012 15:17

Another BFN from me today. Sigh. Thanks Abney for posting that article - good to keep hopes going to read stories like that where it does work out eventually. It sounds like she had intralipids during the IVF, so before a BFP, has anyone ever heard of Dr S prescribing that?

Ari and Sue hope this one works out for you both.

duggs1976 · 20/05/2012 16:00

Yes care I had intrallipids before egg collection and on BFP this last ivf round. I wouldn't usually have even been prescribed them as high nk cells not v high. Dr G says there is a test in Chicago that determines whether u will respond to intrallipids or ivig. X

Coconutfeet · 20/05/2012 16:09

Oh ari, fingers crossed for you. I can completely relate to that "nothing" feeling. Self preservation, I suppose.

It does seem like a bit too much of a coincidence that this has happened to ari and sue while off the pred... what's so frustrating about all this treatment is that it's still just a massive bloody experiment, but people are paying huge amounts for it. Not do bad for those of us who got lucky early on, but horrible for those still trying.

Abney I was on clexane up to 24 th week of pregnancy. Didn't start till around 6 weeks though as I wad already pg when I saw Mr s and had the tests done. I've got an inherited gene mutation which causes sticky blood apparently.
Kittens - I've got v high nkc and didn't start anything except aspirin before 6 weeks pg. Not that I'd recommend that course of action but I'm just saying it can work out.

duggs1976 · 20/05/2012 19:57

Wanted to mention dr g talked about a drug called neupron as there has been some considerable success in the US and Europe. Not sure if any of you have heard of it but thought it was worth sharing the info. Smile

Arianrhod · 20/05/2012 20:16

What's the neupron used for duggs? I did send Louise a text yesterday asking her if there was any alternative at all to the Pred since it has such a bad effect on me (if this ends up as a chemical of course, I don't much care on the remote offchance it's a 'real' preg) and unfortunately her answer was pretty much what I expected - no, the Pred and hydroxy is the right plan for me. Sigh.

Getting what I can only describe as stabbing pains in the left ovary area tonight .. what's that about??

eurochick · 20/05/2012 20:18

Tentative congr.... to Ari & Sue.

battery could it just be a bit of mild food poisoning? That often feels like period pains. My IBS never makes me vom, but everyone is different of course.

free well done on your night out. I hope you enjoyed it. I'm not sure I could manage 2am and I'm not PG!

Sorry about the BFN Carebear.

suemays · 20/05/2012 20:20

Kittens I have V high killer cells too. Dont forget Mr S said it might take a few pregnancies to get the right balance of drugs for me as I was in the top category. Cant remember exactly what they were now. I wont bother getting them retested as I am on the highest drugs anyway. I am hoping the hydroxy will make this one stay.

Ari I am not getting symptoms either but I am only 12dpo today. I has a few twinges and pulling sensations earlier but I dont feel sick or have sore boobs. I did on my last chemical at this stage though so I dont think you can read anything into it. I am expecting a BFN tomorrow morning when I test to be honest but I will still be gutted if it is! If I do get another BFP tomorrow, I will ask at the clinic if I can be given anything else! I sound like a druggy!
The only thing I have developed this week is a bad cough and a bunged up nose so the steroids must be working!

Duggs not heard of neupron so will be interested to hear all about it.

batteryhen · 20/05/2012 22:31

Good luck testing again tomorrow sue and ari! Will keep my fingers crossed for a darker line xx

euro it did cross my mind about food poisoning but my ibs does make me feel nauseas, and I think that coupled with tummy ache just tipped me over! Feeling lots better now x

Wave to everyone xx

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