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.

Afternoon everyone. I've been lurking on my phone but a friend has been fixing my laptop so I've not bben able to reply to anyone as it takes me about an hour to write one message on my phone. I'm supposed to be writing an assignment for my MA at the moment so this is a quickie too.

Brownie - Congratulations!! How are you feeling?

Stogan - Sorry to hear you've had such a shitty time at work. I'm shockled that your boss hasn't nipped that sort of talk in the bud. Very unprofessional.

Brilliant news about the prescriptions Arianrhod. It's given me the motivation I needed to go and see my GP next week for the same thing. it makes sense not to get the pred on the NHS but I'm hopeful about the thyroxine and the Clexane as that's at least £4 a day. Thanks for the tips about Lloyds pharmacy. I'm definitely going to check there first next time round.

Congrats on being 13 weeks Digi. I'm not sure of your back story. Is this a milestone for you? Have you gone public yet? I'm supposed to be nearly 10 weeks now but I'm getting massive and not sure that I'll be able to keep it hidden for an awful lot longer.

I'm on 40mg of pred and feel rotten, but that could equally be thyroxine or pregnancy-related. I'm finding that I wake up in the early hours for a pee and then just can't get back to sleep for ages, so when I do get up I'm really tired. This week has been manic and I have been keeping going though, which is maybe helped by the 'roids. I'm really looking forward to being able to reduce the dosage.

at your advice to shop at Asda, Freelance. We've definitely been eating a lot of lentil-based meals this month as I prepare for another appointment tomorrow and an intralipids treatment next week. Ouch! How are you feeling about a trail-blazer for Mr S? It's exciting but, I imagine, pretty terrifying trying something so new and unexplored.

Oh, and I've been meaning to mention this but kept forgetting. I was reading back on the thread and there was some worry about the calorie content of intralipids. Jackie at New Life assured me that each infusion was only about 200 calories (as she plied me with hot chocolate and piles of chocolate biscuits).

I hope everyone is OK.

Hey girls thank u all so much for ur support re the bullies ! Turns out there are 3 people in my office who have taken it upon themselves to slag EVERYONE off so it's not just me, whic h of course doesn't make it right but at least I've not been singled out !!

Sorry not been on for a while had my nieces for the weekend and although they are lovely it's been manic ! So bath and early night for me. Haven't had time to catch up on all ur stories but will this week.

Hope everyone is well and taking good care of themselves xxx?

Hi Stogan. It's good to hear it's just a small group of people with a nasty attitude. I hate that office lemming effect. If people are disgruntled they often feed off each other and sit there bitching. Luckily for me I have no colleagues :) although you do miss out on the nice stuff about having colleagues when freelance too.

Sorry you are feeling rotten coconut. Yes I wasn't sure either, whether I felt crap because of the 40mg of Pred, pregnancy or thyroid. I felt awful up until last week too, but I am now starting to feel a lot better. I think that was post-Pred and post-pregnancy hitting me. Good to feel it is leaving my system now.

Battery sore boobs huh? Ooooh! Keep us updated!

Damn, Digi, why didn't the Pred ignite my so-far-unawakened housework and cooking gene am almost jealous. Can you come round here and burn off some Pred withdrawal if you get any more energy rushes...? Glad to see it is all going well though.

And yes Iggi that train journey must be exhausting. I did it the other way round recently (when I must have been getting pregnant in the 2ww) and stayed the night so it wasn't too bad. Return journey is a PITA! Hope it all goes well at the appointment.

Well, I think I am about to out myself in the national press in terms of having the miscarriages. I got a call from MN earlier as I had been chatting to them re setting up an interview for the doc and they asked me whether I would be a case study in tomorrow's Independent. Tbh I was a bit reluctant to out myself in such a way, however I guess that is one of the things about miscarriage - we need to stop it from being such a taboo subject. I think it will only be a tiny mention of me plus a photo. But I guess if I want to do the documentary as some point I am going to be outed anyway. I am just hoping it goes unnoticed by people I know at the moment. I feel a bit shy about it still. I am trying to work out the reasons why and maybe it's because having mcs has outed me as ttc and somewhere deep inside I feel a bit of a failure for not being able to keep a baby. Also I don't want people feeling sorry for me! I guess there might be an ego thing there too - who wants to be the person who people feel sorry for as they seemingly can't do something they want to do? Anyway, unless they cut it out (which can be the case, as I well know being a journo myself) mine will be one of the case studies with the MN campaign in the Indy tomorrow.

Hi ladies, I have just been reading all the conversations on here as I too am on Dr Shehata's plan for Very High Killer Cells. Would I be able to join you? Feeling v scared and a bit depressed at the moment as waiting to take a pregnancy test this week. I am on my first round of steroids but not had any real symptoms apart from insomnia. My problem is that I have no idea when I ovulate so Louise at the clinic told me to start the preds midcycle. This is a prob for me too as I don't know how long my 'real cycles' are so started on day 12! I was on the pill for around 20 years so not had natural cycles and conceived with my daughter on the first month of coming off on our honeymoon! I then went back on the pill after breastfeeding, came off ttc and fell again on first month which ended in my 1st miscarriage. I have had a further 3 over the last year with all pregnancies catching in the first or 2nd month so have no idea on cycles. I tried using a ClearBlue FM but it previously has shown as low and high but no peak (even though I have got pregnant on it). This month though it has showed peak on day 22 even though I am positive I ovulated a week before as had lots of CM!!! I am soooo confused! My husband just tells me to be patient but I am sure all you ladies know its not that easy! I have waited 2 cycles to ttc this time but am still not convinced the CBFM is working properly.

Sorry for the self indulgent message but I feel like I know you ladies already after reading your journeys on here. Part of me feels like I will never be able to give a sibling to my daughter and that I am failing her and just setting myself up for more disappointment.

Free - what kind of freelance do you? I am a freelance graphic designer on a macbook pro - saw an earlier message that you use one too! I agree we need to break the taboo on miscarriages so that hopefully women wont have to suffer this.
Stogan - ignore the office gossips, they probably have sad little lives and are jealous of you being pregnant. If only they knew the agonies we have all gone through. It's great to be able to chat to others who understand on here!

Hi Sue! Welcome to the thread. It's so good for all of us to add new folk to our weird and wonderful treatment chat. Do please hang around. I notice you have very high killer cells and am obsessively intrigued as I have yet to have found anyone who has them as high I as I do and, not wishing it on you at all, but it would be great to have someone up there with me :)

So sorry for what you have gone through but hopefully we are all in the right place. The way I am seeing it now, being that I have miscarried once on the treatment, is that it is not an exact science and I am pleased to know Mr S is looking out for us all and thinking about what might work for each one of us individually.

That must be frustrating not knowing when your cycles are or when you ovulate but I think in terms of taking the Pred it doesn't really matter. As long as it is being taken that is the main thing. In terms of TTC (if you're not already pregnant!) it must make things difficult. Have you tried temping? I managed to get pregnant first try after my first miscarriage of the year by doing that.

Sorry you are feeling miserable too at the moment. It's certainly not easy this business! When are you due to test?

I notice that like me you seem to get pregnant quite quickly and half of me worries, for myself, about the 'unfussy uterus' theory. But it is just a theory and of course if it is correct some pairings have to be good ones don't they! That said, I am also worried now about not being able to conceive next time. I too am leaving it two cycles so am TTC again after my next period.

Re work I am a freelance journo/presenter/producer. And yes I love my MacBook Pro :) am giving it one last pat and stroke now before putting it to bed for the night Do you work at home? I do hence the time to post on here a lot, much of the time. But I have three whole days work out of the home this week! Not sure how my system will cope with it...

Hi Free,
Yes I work from home too hence why I am up late too! Probably a good job I do work from home as I don't think I could handle a 9-5 job with all the miscarriages!

I was shocked when I was told I was in the top 5% too with Dr S - mine are 334 for total NK cell count and 1.9 for activation marker. Not sure what all the numbers are to be honest!

I saw that you had miscarried whilst on the treatment so sorry for you to go through it again. Dr S told me that my first try will be a dummy run so I am not holding out much hope it will work first time unfortunately - its amazing at how cynical you get! He gave me the impression he uses people like us with high results to trial combinations of drugs. I had my last miscarriage whilst under St Marys and they only gave me aspirin and then offered a hysteroscopy when that didnt work (which I didnt have as worried about further complications)! I found they were so insensitive and even lost my test results twice so I dont have a lot of faith in doctors now! I am hoping Dr S will be able to treat all of us as he certainly is more positive! I see he is thinking of putting you on the antimalaria drug next time? I read on another blog that it worked with one of his patients so fingers crossed for you.

I often wonder about unfussy womb syndrome - looks like we have been googling the same sites! Not sure if you found out but the only 'cure' for it is to have sex on the 2 days of ovulation so that the egg does not deteriorate. That is out for me and my unknown cycles! I am exactly the same as you as already worrying that I wont be able to conceive as quickly this time. I get obsessed with counting days all the time but think that is the same for all of us. It almost makes it worse by getting pregnant quickly as I feel like mother nature is sticking 2 fingers up at me as you fool yourself into thinking you don't have a problem if you conceive that fast. I asked Dr S about unfussy womb syndrome and he didnt think it was a problem with miscarriages but then every specialist seems to have different ideas don't they?

I am due to test on Tuesday as would have been on the preds for 2 weeks then. I think I must ovulate late in my cycle as all my previous pregnancies have not been detected until around day 34 so I doubt I will get a bfp. Do you know if there is any reason why you cant be on the preds for longer than 2 weeks? I would be happy to stay on them as dont get many side effects. I worry that I ovulate late and will stop taking them just as it might implant (assuming I fall again quickly). I haven't tried temping as my 3 year old normally wakes me up in the morning so I dont think I would have time to do it as dont you have to be still etc otherwise it rises?

It makes it worse as my husband is on a business trip for 2 weeks in China so loads of thoughts spinning round in my head. He was away for 3 of my miscarriages so i had to handle it all on my own then 2! To top it all I have a friend coming over tomorrow who is 5 months pregnant ( I would have been 4 weeks behind her with my last pregnancy). I have given up counting the amount of friends now though who have babies the same age as one I have lost!
Right, off to bed now so sorry for the long post - feels like I haven't been able to talk to anyone about any of this so I have a bit of verbal diarrhoea!

Hi Free - on the train reading the independent. Who is that gorgeous woman?!

Damn, am in I it iggi...? Agggh! Is it okay...? Am scared to look. I have been in the papers a bit when writing etc and about thyroid things, but this is really personal and I feel a bit embarrassed!!

What time is your appointment? Hope the train journey is not too dull. Give us a review of the article if you're bored!

Ah Sue it is great to have more people to chat to about this issue and hurrah for me - you are also in the top 5%. Yes I was really shocked too actually. I was expecting to have high nk cells but I didn't expect them to be so high. Interesting that he said to you the first try would be a dummy run. What date did you first see him? I saw him in May first time. He didn't say anything like that to me but I see it as having been that way now. I guess we just have to harden ourselves to the whole process and be as practical and pragmatic about it as possible. And keep going, as he reckons that his non-success stories are usually about people giving up. I guess there are only so many times some people can face it though. Because it certainly isn't easy on the mind, body or soul.

Oh gosh I can't believe you have had to go through a lot of this on your own with Dh away! And with your pregnant friend coming around today too. It all seems rather hectic. I too feel sorry for those people who have had full time, out of the home jobs when miscarrying and had to try to keep it together or take time off work. I've been able to slob around crying in my PJs and stay focussed when only when interacting with the outside world.

With temping you have to be still for a minute. I literally stick my hand out the covers, stick the stick in my mouth and wait for it to beep to tell me that the minute is up. It means setting the alarm a bit earlier I guess which is annoying. Especially if your alarm is an unsettable three year old :) Tbh my readings were all over the place as sometimes I was up at 5am for work and other times up at 8am but it gave me a reasonably accurate reading. Although as I did get pregnant first time it was tri-phasic (went up twice, so three overall levels) and I haven't charted since I am not really sure when I generally ovulate either! Some months I get twinges for well over a week. This month I had stronger pain in the left side. I worry something is wrong. Another thing to Dr Google. But yes, trying to have sex at the right egg time just puts another spanner in the works so to speak. I think I will just have sex lots for the suspected fertile days like last time and hope for the best.

Off to buy the Independent and cringe at myself in there :) am crossing my fingers that no-one I know (other than you lot here of course) sees it. Not sure why, just a bit embarrassed. One of those things about having miscarriages I guess.

Ooh now I have to go hunt down a copy of The Independent ... well done you free for agreeing to let them use you as a case study. I fully understand your reservations - while we do need to get miscarriages less of a hush-hush subject, when it's you held up in the public eye on something so sensitive it can feel a bit weird - I know what you mean about the slight feeling of failure, I've felt exactly the same (even though I know rationally none of them have been my fault). Mind you, I also feel a bit bad that maybe two of my three pregnancies (not the middle one, I think was never a go-er from the start) may have been healthy babies and my body just killed them off - that thought rather does my head in at times.

Welcome Sue to the ranks of those of us putting our bodies through goodness knows what in the attempt to produce a healthy baby at the end of it. It takes a large amount of courage and guts, I think, to not only have gone through miscarriages in the first place (and so, so sorry you had to go through them on your own - although to be honest, ultimately no matter how supportive our partners/family/friends are, my own personal feeling is that we all go through it alone really - it's happening to you, your body, your mind - and unless they've been through it themselves, no-one else really completely understands), but to then put yourself through the testing, worrying, scans etc and then what the drugs do to you - that takes guts. My personal opinion, you understand. :)

Morning to all, happy week to all of us, and may all news be good news this week!

Ari x

Oh, crap. ITV just called having seen the article and I am live in the newsroom with the lunchtime news just after 1.30pm. Oh my god - what did I just agree to??

lol free and there was I thinking I worry about everything. I almost always get a strong pain from the left side when I'm due to ovulate, but I'm fairly sure I can't just ovulate from only the one ovary, so I've decided it's "normal" for me.

Having just read my last post, I am wincing horrendously at the shocking lack of coherency in there ... I am putting it down to the pred which at last seems to be doing something, even if only scrambling my thoughts so that what comes out of my fingers isn't necessarily what was lining up for production in my brain! I do feel a bit jittery today, did a bit yesterday too, and can only assume that's the pred. What ARE these things that we're subjecting ourselves to? Is anyone as obsessive about things as I am, and read the entire leaflet that comes with the pred? Have you seen the possible contraindications? Egads! Scary stuff!

Actually I meant to ask you guys on Mr S's protocol ... he's told me to test on 10DPO (he said he's changed his instructions from take the 25mg pred for 14 days to 10 days) but even with First Response I've only ever got a positive result at 12DPO earliest. I did mention this to Mr S - AF usually arrives at 14DPO so I personally feel testing 4 days early may be just too early? - but he said the fact that I only got positives at 12DPO means my hormones weren't strong enough. I'm puzzled by this, since the first and third of my pregnancies that resulted in MC were really strong lines at 12DPO. Anyway what I wanted to ask is, how many of you got BFPs at 10DPO? I don't know, obviously Mr S knows his stuff, but that just seems too early to test to me?

Continued unreserved apologies if any of that is grammatically rubbish .. :)

Grit your teeth free and just be your indominatably charming self :) Tell it like it is, and don't be afraid, we're all rooting for you! Good luck girl, you can do it!

Bugger .. indomitably ... told you my typing is shot to pieces today! lol

Ari you sound like me on my first cycle of Pred. I became very jittery and couldn't string a sentence together properly. My brain felt like a grasshopper jumping from one thing to another. I did find it really settled down after the first couple of cycles though so hopefully you'll regain your coherence soon!

Free, gosh, that's a bit overwhelming! I guess you're lucking in that you are used to being in front of camera but this is somewhat more personal. Still, I guess it's good practice for your documentary. I will try to watch it, we have Sky TV over here. BTW, I just looked at the Independent online. It's great that you were in it to highlight the Killer Cells treatment. Not enough people even know it exists so any exposure is great. You are rather gorgeous to, might I add?

Stop worrying, the article is fine! Stuff about you and also the MN mc code of practice. It's on the first page inside if anyone wants to read without buying! My appt is around 4. I am swinging pendululm-like between hope and despair. Dh doesn't want to try again if this goes wrong, not sure what I want.

We will all be with you Free. In spirit, obviously

Aha! Didn't think about the online Independent ... doh! Off to take a look now ... :)

Iggi lots of luck for this afternoon ... try not to think about "what happens next if .. ", and let us know immediately you know! Well, as soon as you've told DH, obviously ;)

Good luck Iggi! We are all with you in spirit too. Think of us all gathered around and I will be doing so when I am sat in front of the cameras too.

Ari I was always worried about that faint line thing. This last one on Pred, I got a BFN at 10dpo and 11DPO and maybe 12dpo - will have to look it up in my diary when have time. And it was only a faint line. But then i read countless stories online when people have the same and the baby is fine.

Gotta run as tons to do before leaving xx

Arian I have definitely kept testing/taking the steroids till day 12, day 10 can be too soon.
Pg tests (even the same brand) have different sensitivities, and of course your fmu can be different day to day too!

That's what I thought. Thanks girls!

free I just read the article online. I think you come across really well. Good luck for your newsroom appearance! I am sure you will be great.

Some of the comments left underneath the article are shocking. Reading them has left me quite upset. So if you are feeling sensitive today I recommend finding the article in a copy of the newspaper rather than reading online.

Agreed euro ... one of the posters is clearly a raving misogynist with a real problem. I read them, was shocked at some of the responses, then decided that they were all blokes who really need a good kick in the 'nads. Ignore them, they're just bored saddos who need a life!

I haven't read them yet but when I presented this late night radio show I had hundred of people analysing my every word on online forums and I know how vitriolic they can be! Luckily I have learned to ignore them. Might take a sneaky peak later though. If you can go on anon please do so and give 'em hell or at least present our view!

Oh, I will need to avoid. I imagine it's the "it's nature's way, some people not meant to have children" lot. So what would they say to the "graduates"' babies, that they shouldn't have been born because they required special intervention? I must admit to having no concept of the trauma of mc till it happened to me, but I would still never have been unkind to anyone going through it.