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.

[eurochick]

Quick question as I am on my phone. Did anyone have trouble making their appointment with mr s? They responded to my email really quickly but I can't get through on the phone and have left two messages this week but had no call back. It's like dealing with the Nhs!

[digitalgirl]

euro I've always booked appointments via email. I know he's on holiday at some point towards the end of this month and isn't back till early November, maybe that's why you're having trouble booking?

[Arianrhod]

I've always booked appts via email as well - tried to get through on the phone once early on and only ever got the answerphone so always do everything by email now.

[Havingkittens]

I have an NHS appointment with him for 25 October so I hope he's not away!

[Coconutfeet]

Welcome puree! How are you finding the pred?

Great news Comedy. Did they give any indication of why you might have been spotting?

And you too Digital. It must feel great ?coming out? finally. I can?t wait to be able to do that as I?m sure everyone must be wondering why I?ve got so porky all of a sudden!

Suemays ? I?ve also had acupuncture at the London Acupuncture clinic. I haven?t done it this time around as we?re cleaned out with all the treatment but I would recommend them. As Digi says, they?re very knowledgeable. (I?ve heard particularly good things from several people about Daniel, although I didn?t see him myself as I couldn?t get in on the days he worked.)

Arianrhod ? How did the test go today?? I hope Mr S is willing to address your concerns at your appointment on Monday. It?s good that you have found an alternative folic acid. Do you have to take the additional amount all the way through a pregnancy or just for the first 12 weeks.

Eurochick ? That?s odd about the appointment. I left a message and got a call back from Cheryl really quickly this week, so she?s definitely been around. He told me he was flying on the 24th and I needed to get an appointment with him before he went. I?m doing it in Epsom instead of Harley St this time as I?ve got my next intralipids next week as well.

Well I?m going to be down to only 6 pred tablets from tomorrow. It feels good to be finally coming off them. I can?t wait to feel normal again. I?ve had loads to do this week though so it?s actually been pretty handy having a helping hand to get me through everything. Was up making books at 5 am the other day (I?m a teacher)!

Hope everyone else is OK!

[eurochick]

I emailed a query and they told me to call to make an appointment!

I expect better admin when I am paying directly for my doctors...

[Arianrhod]

euro that's really strange - I've always arranged my appointments with Cheryl through email. You're using the standard office email address, yes?

coconut marvellous that you're coming off the pred (although I can imagine the extra energy boost comes in handy!). I have to be on the higher dose folic acid/l-methylfolate for life, as it's not a pregnancy issue alone, unfortunately. And as predicted, the pregnancy test I took this morning was an emphatic BFN - not even a hint of a hint. But to be honest, I just don't think it's happening this month anyway - no twinges, no pangs, no nothing. Oh well, onwards and upwards!

Hope everyone is feeling good this morning?

[scooterchaser]

Hi all,
lurking lately but finding it had to post from the phone so apols for absence. Well done free on the media appearances, massively brave of you. Sure there were tons of us like me cheering the screen! Hope you are getting lots of support from friends/family newly in the know.

Just a quick question, what does implantation pain feel like? I don't recall ever having it before but I am having horrible hot pulling pains in my lower back and sometimes stomach cramps. This is my first pred cycle (7dpo) so it would be a bit of a miracle to be honest but it's driving me batty. I don't get pain like this with AF (only when miscarrying) so I just wondered if anyone else had had these pains as a positive sign!

Feeling worried because I went for a long run yesterday (totally out of character) I really hope I haven't disrupted a possible pregnancy - the pains started almost straight after.

[Arianrhod]

Hey scooter ... well I understand it's different from person to person but for me, it's cramps like pre-AF cramps, and for 2 of my 3 recent pregnancies it's been 7dpo and 8dpo.

But I've heard of some ladies getting that lower back pain during implantation as well, so you never know ... fingers crossed! :)

[EmiJo]

Hello all, Suemays suggested I join this site. I must say it's good to be among women that actually understand what it's like to be me at the moment!

A short(-ish) potted history of my pregnancy attempts to date:

Age 38, (nearly 39), married at 36 and started trying for children straight away.
Fell pregnant on first attempt, lost pregnancy at 7-8 weeks. A few months later I fell pregnant and lost again around the same time. I followed up with a scan diagnosis which suggested I had a bicornuate uterus. The consultant said I didn't have this, but a uterine septum. I had this operated on and was told I had 85% chance of conceiving and carrying to term as a result of the op.

I lost another pregnancy at between 7-8 weeks, and a further one at 16 weeks (fetus 13 weeks). Chromosomal testing showed no abnormality.

Went to Mr S, but fell pregnant before results of blood tests (oops). Lost pregnancy.

On NKC treatment, lost pregnancy at 6-7 weeks. Chromosomal testing produced no results.

I have just found out that I have had another missed miscarriage. I am 8 weeks, but there is a 6 week fetus, no heartbeat. I am due in for ERPC on Tuesday next week, and just hoping my body holds off shedding this latest failure as I desperately want to find out whether this was chromosomal, or some issue with the level of NKC treatment I am on.

Am trying to read all the earlier posts on this site. It's a little overwhelming. I need to read up more about tracking ovulation. I wondered if anyone recommended particular vitamins to take. I am also intending to have acupuncture and also considering having treatment to try and get my head a little more sorted, as I am beginning to think that this number of miscarriages is really taking its toll on my state of mind - however calm and together I may appear to those around me...

All the best to everyone.

x

[freelancegirl]

Oh my gosh Emijo what a hell of a time you have had. I had to go through your post again, I counted 7 miscarriages is that right? So, so sorry for what you have been through.

Welcome to the thread however, I do hope we can be of some support. We certainly have done a lot of research between us all and have a lot of varied experiences to share. So sorry you are having to have another ERPC next week too.

Your story sounds similar to mine as I too have had another miscarriage when on the treatment. I am wondering what level he said your nk cells were? From my rudimentary research (ie comparing levels on threads) it does seem you are more likely to have difficulties if you have very high count like I do. But there are women who have high levels who do have successful pregnancies so all is not lost. I can't imagine what you must be going through, both physically and emotionally. I know my body has felt a bit wracked at times - after the last ERPC and taking a high does of Pred for over 2 months. I am not looking forward to having to go down that route again very soon.

Why was it that you wanted to know more about tracking ovulation? Was it just for trying again or are you thinking any theories about late ovulation and miscarriage. I don't know whether there is a connection between those, just i have heard people speculate.

Has Mr S said whether he is going to try anything different with you next time?

Scooter I had similar feelings to ari and actually woke up in the middle of the nights with strong period like cramps. Digi noticed them on my list of symptoms and said she got similar too when implanting I think. I also had a couple of really odd electric shock type feelings somewhere in the ovary direction. No bloody idea what they were, but then the foetus was never seen this time and just didn't grow so maybe I am not the right person to tell you about these things.

Digi it is GREAT news all seems to be going to plan! I hope it feels good to be more 'out' about it with people in RL.

Hi to everyone else and sorry I have been AWOL (compared to normal anyway) for a few days. Damn work getting in the way of my mn time! Things with me are fine, been working hard and enjoying life as a non-ttc-er and no-pg-er (mainly meaning lots of cava :) ) and also seeing my GP on Tuesday to ask nicely whether she will convert my private prescription for Hydroxychorloquine (the anti-malarials) so I can get started straight away. I spoke to Mr S via the office (on email) and the course of action is: start the Hydroxy ASAP and continue until 16 weeks pregnant. That of course is if I even manage to a) get pregnant and b) get to 16 weeks. The rest of my treatment is to be the same - start 25mg Pred on ovulation and then go to 40mg, cyclogest and intralipids on a BFP. Will be intersting to see whether something so experimental and new works!

[Arianrhod]

Welcome Emijo, so very sorry to hear of your losses - I'm awed by your keeping a level head after so many miscarriages, and still have the courage and strength to go on trying. Kudos to you! You're very welcome here, hope we can help you through your experiences in some way.

Watching your progress with interest free ... I'm still in the a) stage myself, slightly cursing myself for the vague let-down feeling of the BFN this morning even while knowing I never get a BFP at 10dpo. shrug C'est la vie, next OV date is due to be Hallowe'en so perhaps some kind witch can cast a fertility spell on me that night!

[freelancegirl]

I have only actively tried to get pregnant once (ie counted my DPO etc and therefore had to go through a 2ww, the other times were a far more casual approach!) but I do remember it was a rather frustrating and no I didn't get a BFP until around DPO 14 I think. So there's time for you yet ari. Otherwise join me on the bandwagon next month. I estimate that I will be ovulating around the 7-10th of November but no idea really until AF comes - the last WTF cycle was 33 days after ERPC and Sunday 23rd will be 33 days since that. Oh... such fun we have with our sticks, thermometers, diarising and pant checking...

[scooterchaser]

emijo so sorry to hear what a hellish time you have been through and feel for you in the horrible waiting limbo before ERPC. It is probably the last thing you want to think about but when you said you were worried about losing this one naturally before Tuesday I thought I should just let you know the advice I was given by my local EPU. After starting to lose my fourth pregnancy I was advised to 'capture' the mc and bring it into the EPU in a clean container (sorry TMI but those were the midwife's exact words). DH was amazing and pretty much did this for me so I didn't have to see it. If things should start happening I would recommend ringing and checking with them that they will receive it there and send it off to the lab (I did have a bit of a wait while the weekend staff checked the protocol for dealing with it) but the upshot was I did get analysis and karyotyping results in exactly the same way as I would have done had I had ERPC.
Again really sorry for graphicness but then we are all used to that aren't we.
Thinking of you, hope you are getting lots of support and TLC.

free I think I may be bandwagonning with you next month. My cycles are so short these days and I think these back cramps will probably turn out to be AF, they feel a bit too sinister to be good news. Good luck with the groundbreaking malaria drugs, I think I took that one at some point and never had any side effects. Fingers crossed...

ari still time, keep us posted on the testing...and the halloween spells :-)

HOORAY for all the good scans this week, giving us hope!

[iggi999]

Hi EmiJo so sorry for your story. I hope you get some answers and of course, a happy ending.
You asked about vitamins - I am about to take my daily dose so I will list them for you! Just don't ask what they are all for, I really don't remember (I am on steroids too so they won't be things that interfere with that):
Vit D3, high dose folic acid, pregnacare, aspirin, selenium (without vit a), magnesium, calcium, co-enzyme Q10, omega 3. All from Holland and Barrat, they make a fortune out of me

[Comedyworks]

So sorry to read about your history EmiJo - it is such a horrible time waiting for an ERPC and the constant wondering about what might ave been and what to try next - I am really sorry.

Ari - I have been pregnant nine times now and never tested positive until at least 14dpo - good luck

Thank you Coconut feet (I am in teaching too!) - there didn't seem to be any explanation for the spotting - no signs of anything untoward - the blood was brown and so they think just 'old' blood that had escaped. To be on the safe side the cyclogest has been upped to twice a day.

I know I am really lucky to be pregnant but finding this week now a real challenge - have got a scan and intrallips booked for Wednesday which is the eight week mark and just can't believe that there will still be a heartbeat. I'm feeling lousy which I'm seeing as a good thing but in the past - pre treatment - I think the progesterone has made me very sick. I thought 40mg of steroids daily would stop me being so nauseous! I think one of the awful things for us is that each of our pregnancy days feels like a week (like dog years) in that way I figure that I have spent about seven years being pregnant!!

Btw I have got a really swollen stomach - anybody else got this?

[Comedyworks]

Digi - sorry also wanted to add my congratulations to you - weird as it may feel must be lovely to be able to tell people - and you are helping me to be a bit more positive about my pregnancy - thank you!

[iggi999]

Comedy we are withing a day of eachother - I would will be 8 weeks on Tues. I have half-term off now and hating it as work kept my mind distracted! I've a feeling a lot of cupboards may be cleaned.
My stomach is bloated, but to be fair this is probably due to the buckets of chocolate I've consumed.

[Comedyworks]

Is this the furthest you have got Iggi? I've got nor more week to go until half term but am finding work quite hard going - do know what you mean though as the countdown s a bit quicker when you're at work!

I think my very large stomach is probably a combination of drugs / constipation / bread and cake (only seem to be able to consume carbs at the moment)

[digitalgirl]

comedy glad I'm helping you to feel positive. And yes my stomach is ridiculously large for my stage, even my mum commented on how big I was for 3 months.

EmiJo Welcome to the thread and I hope we can be of some comfort to you. I'm so sorry to read your history...I think it's very sensible to be thinking about getting some professional help for your emotional well being. I must admit I tried counselling as I thought it was 'the right thing to do' but it didn't really suit me (much to my surprise, thought I would love talking about myself), I think maybe I would have benefitted from a different counsellor. I actually found my acupuncturist to be a good source of counselling - it helped that he was very knowledgeable about the medical side of miscarriage and was able to offer advise and educated opinion rather than just tissues.
I also went running in between my pregnancies and found that to be quite cathartic. It's bloody hard going through both an emotional and a physical rollercoaster and you do need to give yourself a break. Even though you know the drill by now, take care of yourself over the next few weeks and treat yourself to lots of nice things.

freelance wow, new drugs to start ASAP. I guess long-term use must be fine then - and hey, think of all those malarial regions you can now visit at the drop of a hat! Early Nov really doesn't sound that far away either

Like you coconut I've been weaning off the pred. I took my last 5mg today. No more tomorrow, that's it. Am still taking the vitamins, even though we're supposed to stop at 12 weeks I thought might as well as I've got them. Cant bloody wait to stop taking the cyclogest...just over two weeks to go.

ari sorry you got a bfn...will you wait a couple of days before testing again?

scooter I wouldn't worry about a run 'dislodging' anything bean-related - even if it was out of character. I think it's just there's a risk of you hurting yourself if you start running when pg. Hope it is implantation! Fingers crossed.

Am knackered and I think DH has fallen asleep putting DS to bed. So may head off myself soon. Have a good weekend everyone.

[iggi999]

It's around the time 2/4 mc went wrong, the other 2 were earlier.
I am lucky though - I do have one DS, all my problems happened after his pg for some reason. The steroids definitely have an impact on digestion, I think. I do honestly feel I have been overeating in a (subconscious) attempt to get fatter and hence "feel" pg!

[Comedyworks]

Fingers crossed for us both then and perhaps we will be telling people in four weeks time or so. I had two children with no problems and would never have known that I potentially had this problem but when my son died four years ago aged 2 1/2 we decided to try for another and then six miscarriages ... Life is never what we expect is it?

Probably time for bed for me as well - perhaps after one more slice of bread!

[ChocolatePud]

Hello all... Been lurking on this thread for about a month or so now before finally "coming out" and posting. I can't tell you how much of a relief it is to find such a lovely, welcoming group of ladies going through the same experience as me.

As brief a potted history as possible: 2 v early mc's (3/5 weeks, so possibly biochemical pgs??) and one at 8/9 weeks last March with ERPC. Saw Mr S a few months ago who diagnosed v high NKCs - 247 with activation marker of 2.11 for the statisticians among us. I'm on the v high NKC treatment of 25mg Pred from ov, 40mg from BFP, cyclogest etc...

Had another v early/biochem in Sept. Month 2 of ttc on Pred. Thought I'd got af but was v short and started spotting a week after and when CBD said 1-2 I knew straight away what had happened. hey ho. Of course I'd stopped the Pred when I'd "come on" so didn't hit it with everything we could've done. After everything else tbh I barely blinked at it: more relieved could still conceive as easily after ERPC.

Louise advised me to use ov sticks this month as I wouldn't know when I'd ov after the mc. Am now 8dpo and will be testing on Sunday. I agree with Ari though and will keep going on the Pred for another couple of days if it's BFN on Sunday!

That's the main thing I wanted to say (sorry its taken so long to get to the point!) - I don't see what harm it can do to take another couple of Preds more than 10dpo, given that even First Response isn't infallible early on. My experience last month has taught me that I want to make sure I give my next pg the absolute best chance. Stopping Pred before a BFN is definitely N can't be the best way to do that...??

The flip side is that we can book in for Intralipids sooner the earlier we get a BFP. Let's think positive- if it's not this month it'll happen sometime and until then we just have to keep FR/CB et al in business

Finally, Free you are so brave for coming out so publicly about mc, much much respect to you. And congratulations to those who are pg, there's been so much positive news on here lately it's fantastic!

Fingers crossed for more good news over the weekend :)

[iggi999]

Comedy Don't know what to say. You are certainly due some good luck.
Welcome Chocolatepud, glad you are on the programme, hopefully you'll have some better news soon.
Bed for me - now where's that bloody progesterone?

[ChocolatePud]

Comedy I'm so sorry to read about your ds. Saw your post after I'd posted mine. You definitely are due some luck and hopefully next week's scan will make you feel more confident about this pg. You may already know this, but one of the things Mr S told me was that at 8-9 weeks the placenta takes over, meaning that the NKCs should hopefully be beaten and the pg is more secure.