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.

Agh! Willitbe I could swear I have seen someone post something online about her results but I am not sure where! I've been having a good look through my history, as I literally saw it in the last couple of days, but I can't find it. From what I remember however it was a poster on another forum or board (not necessarily mn) who said they had called her/her people and been told that the results were through. I remember being confused as the message didn't quite make sense but what I took from it was then had been proven in favour of treating with steroids but only by, in my head I want to say 60% or 70% and so they were going to do some more trials. I bloody wish I could find this for you and I will have another look.

I am guessing you have already called up her office and asked? It might be worth doing so again anyway as it seems that this person who posted did similar. Is there no way your consultant will help more? It must be so frustrating for you!

Kittens I too am noting down every bloody symptom or twinge. These are probably things we would have just ignored before. Our only saving grace is that we can come on here and mention them rather than having to say these things to our RL friends!

I have prescription in hand, am going to pick up steroids tomorrow and I think I will start them on Monday - CD14 - keeping a keen eye out for any ovulation signs. Am particularly crap at temping still but have poas and no extra ov line.

kittens sorry for the bfn. Maybe tomorrow?

freelance I will pm you about your doc.

willitbe if you have a look at the recurrent buns thread on the miscarriage board I think someone there mentioned the results were 60/40 in favour of steroid treatment. However the number of participants were less than a hundred so they're looking to conduct a larger trial next year. Mr Shehata has approximately 80% success rate with his treatment. But because it's not done as a double-blind trial it's not accepted as clinical evidence that it works. I think if I'd had 10 plus miscarriages I would try anything. Can you not ask your GP to prescribe you 20mg prednisolone for the first trimester. Surely they would be sympathetic enough to try it, after all you've been through. I'm surprised the consultant isn't willing to prescribe it just out of curiousity. The very best of luck to you.

Ahh, so that's where I saw it. Yes I remember now, someone did mention the results were 60/40 in favour of steroids.

Am with digi on this one, surely your GP can prescribe Prednisolone based on some of the evidence that's not really classed as evidence but definitely seems to work?! I really feel for you, let us know how it goes. I was pretty shocked to find out I have really high NK cells levels (in the highest 5% Mr S has seen!) but I have to be grateful for the fact I am getting treatment.

Thanks for the forthcoming PM Digi, Willitbe you also sound like a prime person to chat to for the documentary I am putting off as I am a bit scared I don't know what I am doing now starting. It's so shocking that after 10 miscarriages you are not being taken seriously. If you are up for a chat do PM me too!

I've just posted this on the Recurrent Buns thread but wanted to put it here too incase there are people reading this that aren't on there.

A rather nice tale of hope...

Last night I went for dinner with an old friend that I'd not seen for a long time. She was asking me about my "baby situation" as the last time I saw her was after my third pregnancy. I told here what had happened since I'd seen her and that I was now taking steroids for NK Cells and she said "Oh, yes! That's what happened with xxxx & xxxx (won't mention names on MN just in case!)." She then went on to tell me that they'd discovered this after something like 5 miscarriages and that they had just had their 3rd (!) baby on the steroid treatment plan. Isn't that amazing to hear?! She did say that they had a couple of miscarriages between those pregnancies - but we know that there isn't a 100% success rate. But with perseverance at around 41 years of age they now have 3 kids after thinking they had no hope.

Makes me feel a little more hopeful. Now all I've got to do is get pregnant!

That's lovely kittens hope we can be the people in one of those stories one day.

Thanks for posting that kittens, it is indeed really good to hear. My next question would be do you know how high her levels were but of course you don't and I really must stop obsessing about those figures as well as the ones on the scales! My mum also put me in contact with a lady who is 41 and had 5 mcs before going on steroids and intralipids with a doc in birmingham who trained with dr beer. Good news stories are great. Am also very pleased today that one of the 'miscarriage friends' (more words I never though I would say...) I have met on another thread had a good scan today. Not being treated for anything but she was understandably terrified before scan. Nothing new from me except am off to Brighton for the weekend with a bag full of ovulation sticks, a thermometer and a newly acquired and as yet unopened pack of Prednisolone for probably cracking open on Monday. And so it begins. Al expecting a big anticlimax when nothing happens for months. Actually I might not take the Pred till Tuesday anyway.

Thank you for your help on the trial question it is useful to go armed with information. Because I am already on meds from the consultant, my gp will not prescribe prednisolone for the pregnancy. However I did have prenisolone for the first few weeks during a previous prengnacy, it was interestingly one of my later m/c's. However it was prescribed for me for reasons other than pregnancy. So unless I can go fake asthma with the gp, I don't think I will get it again from there! I will have to tackle the consultant.

Havingkittens - that is a very encouraging story!

freelancegirl - have pm'd you.

Hello all, I haven't had anything useful to add for the last few days as have been off charting, temping and SWI ing in the build up to ovulation... Gripping, I know .

I haven't been able to POAS for the last couple of days as I was away without sticks but I have had many twinges in the ovary region, today a huge peak of temperature (although it IS bloody hot and I woke up later than usual) and still not quite sure about the ewcm. Nothing huge (?) so I think I had something this morning.

I am going to just keep SWI every day for the next few days but my issue is now when to start the Pred if nothing comes up on the sticks. It is CD14 today. Shall I wait a couple of days to see what the sticks say before starting Pred?

AH, spoke to the clinic and they recommended starting steroids tomorrow (CD15) as the sticks are not always 100% reliable. So tomorrow it is.

freelance if your temp stays high for three days then you've probably ovulated. It is bloody hot today though! I've stopped temping for this week as I'm not due to ov for another 3 weeks. Yawn (that's me being boring not you).

Don't blame you for stopping temping, I think I won't bother at that stage of cycle too.

It IS bloody hot, I had at least four Pimms yesterday and also checked my temp at 9am as opposed to my usual 7.30-8am... No wonder my temperature was up this morning :) But I have been having twinges and it IS CD15 tomorrow so what the hell, am going to start necking the drugs.

Hello girls, can I join your club?
I also saw The Shehameister this month for the first time and got diagnosed with very high NK cells - whooppee! My levels were 2.11 or 470ish and he said it was very high. Also been prescribed the 25mg pred from ov, then 40mg from bfp (plus cyclogest) then the 3 x intralipid things. Not tried any of this yet though. I'm also on metformin (prescribed by another specialist) for PCOS.

I've had 2 mc previously and maybe, cautiously, just about to start feel like trying again. Maybe.

Has anyone had the very high level but not bothered with the intralipids?

Yay, cheerfulcharlie, another one to add the the club. Sorry of course you have had the mcs and find yourself here but there is something rather reasurring I am finding about meeting other people who are about to start popping or are already popping mr s' happy pills:) I do hope we can be of help to you. I can beat you in the high nk cells stakes as mine were tested as being 3.79 and I too have recommended the same treatment. I have started 'trying' this week and still trying (albeit not as we speak...) and will be taking my first prednisolone tomorrow morning. Of course, I am not pregnant yet but I think as soon as I am I will be going down the intralipids option. What puts you off - price, procedure..? Obviously it's expensive and doesn't sound much fun but I will definitely be giving it a shot. Just have to get pregnant now! I understand how you mint be cautious at trying again. I am bloody terrified in a way of getting pregnant, but also of course terrified of not getting pregnant. Ttc after mc seems a rather scary prospect anyway, without the killer cell complication thrown in .

The drip puts me off because i live a 7 hour flight away and also work full time with minimal holidays left! Flying 3 times in early pregnancy worries me really as last two times I was told not to fly. i suppose I could do it but just pondering whether to try without first. I'm trying to find out if any docs can do the intralipid drip over here but I'm not too hopeful.
My last MC was in Dec at 12 weeks and now I'm starting to come round to the idea of trying again I'm also realising it might not happen first time which is a whole new worry I can obsess about!

I'm going through that whole 'everyone around me is pregnant or just had one' thing. I am truly happy for them but I have to say I'd rather not have it all in my face on a daily basis, which unfortunately is unavoidable.

Good luck with the prednis. tomorrow. i am very interested to hear of any side affects. I hope you have none! Will you take it in the morning with food then? Planning to exercise in the evening?

Yeah I am going to take it in the morning with breakfast. A couple of the ladies on this thread (as you might have seen) have been on it already and seem to be managing ok. In fact I have met one of them and I can attest to her distinct lack of podginess or moon face :)

Where are you might I ask...? Just curious, you don't have to say. 7 hours if a long flight to take you are right. I have to travel a lot for a living and wonder if that might be wise too. But if you don't have any specific blood clotting problems I am thinking it is ok? WHy did they tell you not to fly? Yes it would be good if you could find somewhere there who could do it. OR I wonder if you could buy the product somewhere else (online?) and find a nearby clinic who can do a drip?

Ah, most of us are with you there with the worrying about not being able to get pregnant first. Seems like such a hurdle! And that's to be done before the really hard work begins!

What's this about exercise in the evening on Pred? I hadn't thought of that. I was going to go to the gym but somewhere in the middle of the day. Digi and others look away now because I am sure I am boring the hell out of them moaning about this, but I have put on a good 10lbs since the miscarriage and I definitely want to do all I can to not blow up like a balloon on Pred. And obviously there are other nasty side effects potentially too.

I will indeed be giving a full report however after my first dose tomorrow!

Mr S told me you can have problems sleeping on the predis. So the best thing to do is take it as early in the day as poss then do a load of exercise in the evening to knacker yourself out! I suppose it also will help prevent all the weight gain from them too. I just worked very hard to lose a stone since jan so will be very annoyed if it all goes back on very quickly!!

Well, that's done. First Prednisolone taken along with breakfast. Am watching out for severe allergic reactions as we speak, and hoping for no psychotic episodes or moon face...

Yes, freelance it's somewhat of an anticlimax when nothing obvious happens. It was a few days before I noticed I was waking early and spending most of the day clenching my jaw. Does vacuuming and unloading the dishwasher count as evening exercise?

I'm mid-appointment at St Mary's. Have just had my scan where she found a polyp or a clot but we all think it's because I haven't finished my period yet so I get another scan next week. V exciting because I'll get another look at my ovaries. Which, incidentally, still have a borderline polycystic appearance. Wonder if this means it's not enough to warrant clomid.

Now waiting for blood tests.

Ooh am excited that you are actually having things done today! I thought it would be one of those appointments where you just get told what will happen and have to schedule another date. And another scan next week too - that IS exciting.

Weird that I get excited about these things but my insides are such a mystery to me that any opportunity for a look is welcomed (apart from when I'm actually pregnant - then scans are terrifying hurdles to be overcome). Turns out I have a consultation first before blood tests. In the house today we have Raj Rai, Prof Regan, Mr Horner and Mr Aziz. I'm hoping for Raj as he seems quite a jolly man.

This waiting room is very busy now. Needs more chairs. People are standing.

It's SO exciting! I wish I was having one too :)

Waiting for news of updates. A jolly doctor is always a bonus.

Excitement has passed. I am SO BORED.

Still waiting to see someone. I'm now running really late for work I have a million and one things to do argh!

Always the case. You will probably be there for hours yet. Am not helping am I..

Am back at work. Just quickly posting to say that I saw Mr Horner, who was very on the ball, and he didn't bat an eyelid at my Shehata history nor at the fact that I was taking prednisolone from ovulation. He noted my long irregular cycles but said Clomid was definitely not for me. He said it is only for those who are not ovulating at all and I am.

Sounds like a good appointment, which is great to hear as I hate it when you build up hopes of a good appt and it isn't. I think that's precisely why you were taking it in your stride rather than looking forward to it. Interesting that he was fine about me s but i guess they surely must be getting used to seeing people who are going down that route. So, taking you off the clomid? Is there anything else they can do to help regulate cycles? Or make them shorter I guess. All good stuff though. What the next step? Soz for any weird typos, am on iPhone. No change here from Pred Day 1, but I guess might be a bit early for that