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Conception

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TTC/ pregnancy on Prednisolone or similar

999 replies

freelancegirl · 13/06/2011 16:21

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.

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Coconutfeet · 24/09/2011 10:40

Hello again. What a bloody relief to have found you all!

Yes I've been hanging about on the miscarriage board for some time now so I recognise a few of your names.

Kittens - I was briefly on the Recurrent Buns thread but it moved so fast I couldn't keep up with it.

Freelance - Sorry to hear about your recent loss. That must have been especially hard as you were on the treatment. Yes I have a ds who turns 3 next month. I had one definite mc just before him (empty sac, discovered at a scan at 10 weeks when I started bleeding) and another unconfirmed one when I was much younger (which I'm pretty sure was a mc in the light of more recent ones) so have been trying to work out when I would have developed the NK cells, if they are triggered by pregnancy, as I had no problems with him.

I completely relate to your feelings of weirdness having the intralipids done. It all felt slightly random, lying in this posh place reading Hello magazine and then shelling out £350 for it all. It doesn't help that DP isn't massively convinced by the whole thing. He's trying to be supportive, but has been reading a lot about it and it's all so conflicting. I don't know how to convince him that we're doing the right thing really.

I'm feeling really anxious about how much everything is costing as well. Louise has said that they'll scan me when I have a follow up appointment next week, but I've got a scan booked in with my local EPU a couple of days after the appointment. Do you think I can ask Mr S to hold off on the scan as I'll find out either way then and save us a few quid?

georgiepie · 24/09/2011 11:02

Hi girls, all went as well as it could yesterday. This time I was a real emotional mess as I knew it was the end of out journey as well as baby number five. I am still angry that only this time 3 days ago I thought everything was going to be ok.

I am sure you will all understand but its also time for me to leave this thread and focus on other parts of my life. To have 3 ERPC's in 12 months is just too much and for the last 3 years our life has been on hold.

I wish you all the luck in the world and thank you for your support and advice over the last 4 months. I just want to add that I do believe in Mr S and his programme even though it didnt work for me this time. If I was younger I would of kept going. However I know at age 42 its time to stop.

Good luck and lots of love xxx

Havingkittens · 24/09/2011 12:03

georgie I completely understand that you need to leave the thread now. I hope the departure from limbo at least gives you some peace once you have had a chance to settle emotionally, and that the next chapter in your life brings you other wonderful things and lots of happiness. xx

freelance yes, my mum lives in France. She's been here about 10 years now. In the south west. It's hard to describe exactly where unless you know the area but the nearest town is amusingly named Condom. Nearest airport, although still almost 2 hours away, is Toulouse. I live in Central London so I guess I will be making some trips back and forth for a bit.

I think I will be TTC again sometime in November, so it's good that I have this appointment in place in October. I am still trying to suss out when exactly it is though. I will try to call them on Monday to find out as I don't think my OH will get a chance. So, looks like we'll probably be starting again at the same time. Fingers crossed for both of us that we can enter the new year sharing a positive journey to motherhood!

freelancegirl · 24/09/2011 13:19

So sorry for what you've been through georgie and completely understand the need to move on. I do hope you can put the last three years behind you as it just have been physically and emotionally exhaustive. We are here if you ever want to talk about it. Lots of love and positive vibes in your direction for a happy future.

Kittens, Condom sounds lovely :) I do hope your mum has support there. It is great that being self employed you can also make time to go over there but as a self employed person myself I know it costs too!

Talking of costs, yes Coconut it's a serious wrench this treatment. Dh and I have a running joke about doing another job for mr s' holiday fund. Oh Joe we laugh when we hand over another £350 quid :) Re the scans, I did the same as you and went for the 6 week with him and then the next couple at Epu. Of course mine showed it wasn't growing and then he was on holiday (using our fund wisely!) and by the time he had got back and I saw him it was a couple of weeks after the ERPC. He really told me off for not having gone to him. But a) it seemed like a waste of money and b) he was on holiday so it was pretty difficult to get an appointment! Am also pretty sure he couldn't have saved the baby but he did say he would have wanted to do the ERPC (his much would that have cost??) to then check the 'products' to see if it was a chromosomal issue and therefore 'just one of those things'.

It's interesting to hear about your prehdkcy history, especially as you had an mc before ds. I guess that doesn't fit into standard nk theory. But neither do I, I don't think. My first pregnancy was actually a termination when I was 19 followed by a mc when 20 (that was painful and a shock but ok emotionally as I didn't know I was pregnant and also didn't want a baby). After the 12 week and emotionally awful first one this year I suddenly remembered that after the termination there had been investigations needed as what was retrieved was v small. So I think it might have been a mmc.

Am on the phone so terrified will lose my long post but yes, glad you found us! It's great to have people you can talk about these things to!

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freelancegirl · 24/09/2011 13:20

Sorry about typos -annoying iPhone

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Iggi999 · 24/09/2011 13:34

Just off phone from epu, had hoped they would give me hcg result #2, but I have to wait till Monday. Did another Clearblue though, and it has gone from "2-3" weeks last Sunday, to "3+" today. So, better than my last pg at least.
I'm sure those of you without children (yet) are a little Hmm at those of us lucky enough to already have one. I was at a party today where everyone had a second child, or was pg with it. I really wish I knew more people who had an only child, maybe I wouldn't feel such pressure to keep going on this road.

Iggi999 · 24/09/2011 13:36

I didn't express myself very well there I think Confused

freelancegirl · 24/09/2011 13:48

Good news aboutthr CBD test Iggi. It's good they are actual testing hcg too, it's quite hard to get anyone to test it in my experience.

I think the children thing is very subjective. Some people only want one, others would be devastated if they couldn't have their fourth! A friend of a friend has just had 2 mcs whilst TTC her fourth and she is desperate to try again. And I guess when you have one child you are constantly moving in circles where people have two and you feel like the odd one out. I only have one good friend who has two and now it is so hard to see her. But she of course has a huge circle of friends seperate to me who all have two children! Tbh I always thought I would have two, but that was on the days I didn't realise I was going to have a killer womb...

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Iggi999 · 24/09/2011 13:58

Do you think one day we might be thankful for our killer cells? Will it help us beat illness in later life?
Surely some good has to come from all this bad!

freelancegirl · 24/09/2011 14:02

I've wondered that too! And done a bit of dr googling about it but not to much avail. However mr s has checked our blood level of nk cells rather than uterine so theoretically that would mean we are better placed to fight infectious foreign bodies as well as baby ones..?

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Iggi999 · 24/09/2011 15:09

I had a question for anyone who has accupuncture - do you think it's safe in early pg? (I have been seeing a fertility accupuncturist, but only when ttc). What I'm worried about is a)actually causing a mc, as I know it can cause af to appear! And b) it stimulating my immune system, which I'm working hard to suppress.
On the other hand, seeing her usually helps me relax and she is very kind.

freelancegirl · 24/09/2011 16:54

Apparently it is very good to have in early pregnancy too Iggi. I had it this time and yes I did have another mc but I don't think that has much to do with it. I only had it twice. Am going to start again soon I think. K did ask about stimulating the immune system abd he said something about it balancing the immune system rather than stimulation. I see the sand person Digi sees, she recommended him to me, and he sees a lot of immunotherapy patients. He said he reckons he only had a 10% mc rate which says something being that he sees people with 'problems' rather than the norm.

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Coconutfeet · 24/09/2011 19:47

Georgie - I don't "know" you having only just joined this thread, but completely understand your need to move on. It sounds like you've been through such a lot. I really hope you are able to get through the grieving process and find some peace with your decision. Good luck.

Coconutfeet · 24/09/2011 20:01

Iggi - frustrating that you have to wait till Monday. Acupuncture is supposed to be very good for supporting early pregnancy but you're definitely right to be working with someone who specialises in fertility issues. I was going to a place on Harley St which has a good reputation. I can't afford it now because of all the other costs but if money was no option I'd definitely be doing it.

Kittens - I hope your mum is OK. France sounds like quite a nice place to be based for a while, although it's hard if you have to keep dashing back and forth for work. What work do you do?

Freelance - Smile about the holiday fund. Thanks for the tip about the scans. I think I might face Mr S's wrath and ask to skip the scan next week. After all, no point in paying for bad news if I can get it for free (and you never know, it might actually be good news, but I'm not allowing myself to think that. It's too painful) I have to say my local EPU have been brilliant at reassurance scans ever since my first MC. I'm always so shocked when I read on here about people being turned away.

Interesting what you say about fitting the standard for NK cell history. I'm going to ask about that next week.

Hope everyone's having a good weekend.

Stogan · 25/09/2011 07:39

Well ladies even after been signed off by mr s last week I'm still bricking it so have arranged to see MW tomorrow at ten to hear the heartbeat. Luckily for me the MWs here are fascinated by the treatment I've been on so they are most accommodating but am I really going to be like this until my baby arrives??? I'm just scared something is going to go wrong all of the time I can't actually enjoy being pregnant Sad I'm sorry to act like a spoiled brat and know I should be so happy after getting so far but just can't help worrying. Sad

Hope everyone here is ok and good luck to anyone with scans/appointments this week xx Grin

Iggi999 · 25/09/2011 08:02

Stogan - you are not acting like a spoiled brat dearie, you are acting like someone who has had recurrent miscarriages. How can we ever relaz again? See your midwife as often as you need to.

Coconutfeet · 25/09/2011 08:07

Stogan - I think it's impossible to relax and enjoy pregnancy in the same way once you've had a loss. I was at a party recently and someone I barely know announced she was 7 weeks pregnant. I was pleased for her of course, but I was thinking, how can you be so bloody confident?!
Would it be worth you investing in a doppler to use at home, for reassurance? You should be careful not to over-use them but a friend had one and it really helped her sanity.
How many weeks are you now?

Stogan · 25/09/2011 08:44

Thanks Iggi x
I'm 16 weeks coconut and did think about getting a Doppler as I think u can use them from 18 weeks but was worried DH would want me to use it constantly !! I think it will be a good idea as u say for my sanity but at the same time I would need to restrict use to once a week as I'd have it on constantly !!! XGrin

Iggi999 · 25/09/2011 09:17

I saw one on MINUTE that said you could use it from 12 weeks. (Angelcare springs to mind?). Are they (potentially) harmful? That's always what worries me - same with scans. Actually pretty much everything worries me!
Coconut the thing is these smug confident people DO just go on to have their perfect families, ime.

Iggi999 · 25/09/2011 09:31

Mumsnet, not minute.

digitalgirl · 25/09/2011 10:08

Welcome coconuts I also remember you from the recurrent buns thread. Pleased to hear you have a diagnosis and that treatment seems to be going well so far.

iggi I'm having acupuncture fortnightly during the first trimester. My last session is next week. The guy I see (and Free sees) works with a lot of Mr S's patients and has known him for years. I can pm you his details if you're interested.

stogan glad you have understanding midwives to see you whenever you feel like it. I dread to think how I'll cope once my weekly scans come to an end. The midwife I saw last week said that I could call up whenever I wanted to see them. Technically as this is my second I'm not supposed to see a mw again till 28 weeks, but she said I could have an appt at 24 weeks if I liked. I also asked her opinion on home dopplers and she said she wasn't a fan, she said that intuition is your best bet. She actually said I'd be better off going straight into hospital to be checked than having a Doppler at home. It sort of made sense at the time but can't quite see the logic of going in to hospital everyday.

georgie if you're still lurking - i completely understand your decision. Enjoy your wonderful, beautiful, cosy family of three.

Am about 11 weeks today and I have a scan with Mr S in Harley St tomorrow afternoon. Hoping for a prescription for lower dose pred - I start weaning off them next week. Eeek!

freelancegirl · 25/09/2011 10:36

Gosh Digi I can't believe you are 11 weeks already! That Serbs to have flown by to me, although I am sure it hasnt for you. I am rather exited by it all. I feel like I am nervously waiting to go on a 40 week long tight rope and I can look ahead down the line and see you lot still successfully on it. Doesn't mean I can stay on it myself but it's good to see success stories. Oh dear, is that a rubbish metaphor?

Stogan, your attitude is completely understandable. I don't know if you will ever feel calm about the pregnancy but I know from occasionally having lurked on the grads thread that people do seem to feel a but more comfortable with it once they get further along. Maybe after 20 weeks you will feel better.

If I ever get to that stage though I can imagine wanting to have an elcs weeks before the due date just to get it over with! Of course I realise that night not happen but ever once I read about dr beer's patients having them at 38 weeks it's been playing on my mind. Also thus is coming from someone who has never given birth so I realise I am naive about the options compared to those of you who have children!

I know someone in RL who has had four losses, one at 30 something weeks. She is now 30 something weeks again and all is going well (I went to her 20 week scan!) but she has been using a Doppler since early on and found it a great comfort.

I have a rotten hangover from a meal out that involved a significant amount of wine! I woke up at 4am thinking if I ever get to the late pregnancy stage I might need serious help in bonding with the idea of having a baby. Ibteespisr it's a defence mechanism from these recent miscarriages sosybd St one point my maternal instinct will kick in again. I am still spotting btw, it's been a very light and strange period. But essentially it meNs I will be back on the pred and trying again in about 6 weeks time.

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Stogan · 25/09/2011 10:41

Aw good luck for tomorrow digital and thanks , think u have convinced me against the home Doppler, our MW drop in centre is only 5 mins away and I can go every Monday if I like so I think that way is best ! Mr s told me it was safe to have as many scans as needed so would assume a Doppler would be the same but I'm not sure?

Felt great when I got up today but now feel as rough as hell, when will I start to feel better ??????SadSadSad(ungrateful I know but bllleeuurrgghhh) xWink

Iggi999 · 25/09/2011 16:14

Good luck Digi. I think travelling to England for accupuncture would require a second mortgage, unfortunately! Glad to know it's not banned in pg, I'll make an appt up here.
At doc's last week my TSH had gone up to 2.8 - am wondering if I should increase my dose to bring it below 2. Tested pre-preg in July, it was 0.04.

digitalgirl · 25/09/2011 20:19

Right properly actually fucking shitting myself now. Just been to the loo and got a small blob of brown gunk. I am desperately desperately hoping that it is a result of yesterday's 'yeah ok let's have sex' session (which will NOT be happening again sometime soon if this is what happens). On the other hand I had a headache all day yesterday which is what happened before the last miscarriage. Feeling ok today, not crampy. Clutching at straws.
This puts tomorrow's scan in a totally different light now. Shit. What if there's no heartbeat?

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