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]

Raynauds was the "red flag" that set my acupuncturist thinking.

I keep having a couple of days of PG symptoms around 7-10 dpo almost each month that I have been trying (ranging from implantation bleeding to dizziness to nausea). And then they go away. As I haven't managed to get a BFP it could all be just in my head, but as there is no obvious explanation for why I am not PG yet, she mentioned it as something to try to get investigated. It seems to be something that the NHS completely ignores as far as I can tell, which is odd. I don't see how it's anyone's interest for women to go through the trauma of repeated miscarriages with the NHS dealing with the consequences.

G'luck to everyone on the thread. I will keep reading with interest.

[freelancegirl]

Thanks Kittens, I guess I should get on with it then and see how it goes! Am trying to be excited and forward-looking but really am also terrified about getting pregnant, terrified about not getting pregnant... terrified of having a miscarriage again.... you name it.

Was it on the other thread that you said you've been feeling crap this weekend? Hope you are feeling a bit better. With or without steroids affecting you it's always going to be a stressful time anyway. But yes it could well be the steroids. I haven't yet been told that you need to have a break from them! After how long?

Eurochick, Ah of course - Raynauld's is also an autoimmune condition. That's really interesting. A lady I know with two small children has terrible Raynauld's and her first pregnancy was a miscarriage. I wonder if she knew the two could be connected. Probably not. But then she has had two healthy pregnancies since the miscarriage.

[eurochick]

freelance my mum has Raynaud's too and miscarried three pregnancies after me (although seemed to have no problems getting pregnant). At the time they had no idea why but since I heard about NK cells it has got me wondering. I do feel it is something worth looking at in my case.

[Havingkittens]

Freelance the lady who phoned me with my results (with the NHS clinic you get your results by phone consultation) said she would send me a prescription instruction for 4 cycles and that if I'm not pregnant by then I should contact them again for more but that I would have to take a break after a certain time, which I think was 6 months because the body needed a break from the steroids. I guess if I'm not pregnant this cycle I will have to call up to get another prescription instruction to pass on to my GP so that I have enough extra to carry my over in the event of a BFP next month so I will find out more then.

I think I'm feeling a bit better now thanks. Yesterday was fine. Just Friday evening and Saturday were a bit of a struggle. Although there are so many other things going on that could've exacerbated my feeling low and grumpy. Speaking to my Dad at the moment makes me feel pretty sad so I think that started me off. And the weather on Saturday was the cause of much boredom and annoyance!

The only sign that made me slightly suspicious of having high NK Cells was that I tend not to catch any of the colds/throat infections etc that my OH has, even if he's breathing them into my face all night long! The only time I can remember having colds over the past few years are when I've been pregnant actually.

[digitalgirl]

Update from me. Got a bfn this morning at 12dpo so didn't bother taking the steroids today. Don't feel remotely pg so I'm pretty sure I'm out this cycle. Feeling very disappointed although don't know why I expected it to work first time.
AF due on Friday, my birthday, so I'll be numbing the cramps with peach bellini's.
Hope to god I ovulate a little earlier next cycle. Can't be doing with 50 day cycles...

[Havingkittens]

Ohhh, bugger! Did you use a First Response? Otherwise it may not show up 'til 14-15 dpo.

I'm not feeling too hopeful, but that could just be me being pessimistic. I think I'm 7-8 dpo now. I've never taken more than 3 cycles to get pregnant before so I'll be quite stroppy if it takes too much longer!

It's funny isn't it? Although it's not rational to expect it to happen straight away it's still really disappointing getting a BFN. Actually, even when I didn't want to get pregnant whilst waiting for my results I was still disappointed at a BFN even when I kind of desperately was hoping for one. Weird!

I hope you enjoy your birthday anyway Digitalgirl.

[freelancegirl]

Oh bugger indeed digi! That must be highly irritating and I am sure I am going to be there this time month with you. I can't for one moment imagine I will get pregnant first time trying but somewhere deep down there is always the hope that we might. Like Kittens says it's really not rational to hope it works straight away but it is definitely disappointing. I am probably repeating myself here but I never wanted to become of of those people who are 'trying' and then everyone feels sorry for them each month. That's probably why I am not going to tell many RL people about my treatment. Great that we can share here instead

50 day cycles are incredibly annoying. Did you say they had given/can give you something that can make those shorter. Mine have been up to 45 days before so I have no idea what to expect now. Kittens is right however, maybe it is too early to tell...? Birthday drinks sound good. I've been out for drinks and food this evening and, apart from a bit of mental beating myself up about consuming lots of calorific goodies, it feels rather nice. With any luck at some point soon we won't be able to drink anyway so we might as well enjoy it while we can.

Re NK cells and colds. That's an interesting one. Do you think we are less likely to get other things too? I think i am average in terms of cold/bug catching.

I am going to Epsom to see Mr S (or one of his people?) tomorrow so I will see what they do in terms of prescriptions and might ask if they recommend a break at any point. Also top of my list of questions is that one about ovulation and whether the cells have the potential to disable rather than just (just!) kill. Any questions let me know.

Euro interesting about your mum too, although awful for her to go through it. Let us know how it goes!

[Havingkittens]

Freelance, I just assumed that would explain me having a pretty active immune system in other ways too. My mum is wondering if it's hereditary as one of the purposes of NK Cells is to fight tumours and the like. She has been given two 3 month breaks in a row from her chemo because her cancer has been stable so she's wondering if there may be something in that. Let's hope so!

[freelancegirl]

It's lucky am not a sensitive soul, St helier gynae dept is lumped in with both antenatal and the maternal assessment unit as well as EPU. I am literally hemmed in by bumps and babies. I am practically breastfeeding one of them as we speak.

[freelancegirl]

Aggh! I just wrote that on the wrong thread! Sorry everyone, normal reply will follow later :)

[Havingkittens]

Aren't they all like that Freelance? At UCH the EPU, Antenatal and Gynae are all in the same place too. It's a right fucker having to sit there in floods of tears in the EPU waiting to get scanned to confirm your MC and book an ERPC whilst all the smug luckier people are stroking their bumps.

[freelancegirl]

I can imagine! It was bad enough at Epu with just the happy scan people at my local hospital let alone having all the rest of th around. Luckily three months after my last one I am not as close to tears as I once was. I aplogised for posting that by mistake as I hadn't replied to any posts, including that about your mum, so I will do do later. Still at St helier, it was a bit of a mish mash as they hadn't got my notes and I didn't see mr s directly. Harley Street it ain't! Look at me-two private appointments and am already spoiled.

[Havingkittens]

Not to worry. I realised that you'd done that. Yes, St Helier, of all hospitals is somewhat of a comedown after a private clinic! Rather a depressing hospital isn't it?

[digitalgirl]

kittens used an Internet cheapie which is sensitive to 10miu. Same sensitivity as FR and I've had bfps at 10dpo on these so I know they're reliable.
Btw I never get colds either. My immune system is far stronger than my dh's.

freelance I started taking metformin about 3 months ago which was supposed to help with normalising cycles but has made it worse. My cycles are normally 37-41 days. Was told it coukd take 6 months before I see any effect with metformin though. Although with the 4-6 month limit on steroids I'm not sure I have the luxury of waiting for it to take effect. Acupuncture helped me get my cycles to 37-41 days and I'm wondering if I should have booked an earlier session this cycle.
Good luck with your appt. I'm seeing mr s on the 13th down at the new life clinic in Epsom.

[freelancegirl]

Sorry about my earlier random witterings from St Helier. I think it was the lovely high security psychiatric hospital feel... that and the fact I was sitting with so many babies I felt like Octomom.

That is indeed interesting about your mum kittens and very good news of course. I was wondering whether raised NK cells might do us any favours at some point. I do hope her health continues in an upwards direction. They say that there's a lot you can do with visualisation and if she visualises those active NK cells fighting off the cancer you never know what might help! I am not some hippy but I have been thinking about visualising the opposite. Imagining the blighters being fought off.

I have a prescription for steroids and Cyclogest and just need to take it to my doctors tomorrow and then to the chemists. As my appointment isn't until 5pm I probably won't start the Pred until Thursday, which will be CD11. Actually, thinking about it I probably don't need to start it until around CD14 anyway. I have, without TMI, starting SWI today! Terrifying, Trying to chill out about it and have fun but WHAT MIGHT COME NEXT is always in the back of the mind.

The lady doctor I saw today did say, when I asked her, that women do have babies even with levels as high as mine so that was some comfort. It was definitely a come down to not be at Harley Street this time though (and my first appointment was private too, at Ashtead). Oh to have loads of cash and for all appointments to be like that.

I have forgotten what is the procedure about seeing him again - wait until a BFP? Digi what are you seeing him for on the 13th? I haven't heard of the New Life Clinic - he certainly gets about. Is that private or NHS?

Also Digi how frustrating about the cycles. Are you going to tell him that the metformin might not be working or do you think you just need more time with it?

I have found out that my private health care (DH's work one) does cover up to ten sessions of acupuncture and I am going to bring that up with the gp tomorrow. I don't think they do it for fertility/miscarriage etc so I might have to be creative in what it is for... any ideas?

[digitalgirl]

freelance you can have acupuncture to balance irregular cycles - which doesn't have to be for ttc reasons. I'm seeing Mr S because Louise the midwife said I should book an appointment for after my first course of steroids to discuss how it went. To be honest I wouldn't have bothered if my cycle had been straightforward as side effects have been minimal - hunger, waking early, clumsiness (I've fallen over three times in the last week). I can live with those, just want to see if I either need a stronger dose of metformin. He might just advise keeping to a strict low gi diet. Or maybe he'll suggest clomid.
Good luck with swi hope you have better luck than me!

[freelancegirl]

Poor digi, I imagine you like a newborn foal tottering around on your steroids. I am clumsy at the best of times so god knows what I will be like. I am always bumping into things, particularly when my period is due and, I think having taken note of this last month, when ovulating too

I think it is good you are going to see him though. Especially as you get to see him personally when it is private. I was a bit disappointed with the lady I saw today. But I did get an answer to one burning question I had and that was whether NK cells could disable or harm a foetus but not kill it. She said that no, the NK cells either kill it or they don't. I thought that was good to know.

Now you mention it I am not sure whether they told me to come back after one cycle of treatment or just to wait until a BFP. I don't think I have written it down either. I also need to arrange a date to interview him properly for the documentary am cobbling together. I am following my treatment and also going to follow a few other people's 'journeys' after mc and with investigation so is anyone feels up for having their journey followed do let me know! Someone who is going to St Marys too would be good. It will be sensitively done and wouldn't it be lovely if it resulted in some happy endings for us. PM me if anyone feels they might be up for it.

Thanks for the advice about acupuncture. I think I will give that a go. I have never been able to use my private health care for anything (they make it so difficult!) so it would be nice to actually get something out of it. And also it sounds like a positive thing to be doing as well.

[Havingkittens]

Ahh, yes clumsiness! Digi you have just explained to me why I have almost cut two of my fingers off in the last 24 hours! And there was me forgetting about the first cycle where I tripped over a couple of plant pots and onto my knees on my patio. Whoops. Bugger, I was hoping it was a "symptom"

Freelance they just told me to get in touch when I ran out of my 4 month supply of prednisolone or when I got a BFP, whichever happened first.

[freelancegirl]

Any additional weight gain going on for either of you? I know we were moaning about post-mc weight gain, but do you think there has been any additional Pred gain...? Am already planning things to eat for when feeling very hungry. High protein snacks, celery, Weight Watchers point-free soup recipes... I did very well last year on low carbs but it was hard work and it doesn't seem to be working/I might not be as strict with the post mc weight.

[Havingkittens]

It's hard to tell if it's the cake frenzy or the steroids but I've definitely put on weight. I suspect it's a combination. This time I feel less hungry though as I've been feeling somewhat bloated. I've been pretty thirsty so I think all the water I've been drinking has filled me up luckily.

No problems with sleeping here, but then I do like my sleep!

[freelancegirl]

Cake frenzy . Mmm. I keep thinking about cake. I'm so lucky I can't cook! I am starving all the time at the moment without taking the damn steroids. I actually haven't had any cake for ages. I have had plenty of bread, wine, cheese etc though so it's not that I have been good, I just haven't had easy cake access :)

I've been having problems with sleep ever since mc anyway. It comes of drinking a bit too much on weekends and then waking up at 5am with some sort of 'what am I doing to my body/paranoia about having been drunk fear. I am getting used to it though as am 'limiting' (?) myself to 3 small glasses of wine in any drinking outing.

[Havingkittens]

Freelance, did they say anything about taking a break from the treatment at all?

I'm glad they were able to give you some reassurance of potential success for your levels.

I don't think I'm pregnant this month. It's 10dpo and no signs, twinges or, dare I say it BFPs (tested this morning). I know, it's still early, but as the midwife said to test on day 10 with the First Response and I've just used a 10mui cheapie I'm not feeling that hopeful. Damn! I put in a pretty good effort too this month. Feeling a bit despondent.

[freelancegirl]

Damn! I forgot to ask and nor did age mention it, but like you I only got 4 months worth of prescriptions. Funny that a break wasn't mentioned. I don't blame you for feeling despondent about it all, particularly when you are really making the effort. I have nothing useful to say unfortunately except just keep on going and it is bound to work. Have you got pregnant pretty easily before? I am sure it will work soon!! I am going to be emailing louIse soon so will ask about the four month thing. Currently at docs, waiting to get Nhs prescription. Feel like I live in these places at the mo!

[Havingkittens]

I've got pregnant between 1-3 cycles all of my 6 previous pregnancies so it's a bit of a blow that it's not so easy this time. I am really moody today and now having twinges in one side, which I've had the last 2 months leading up to my period too, so I'm not under any illusions about implantation. I'm more worried actually that having twinges in one side indicates some sort to scarring. God, you know what you were saying about not becoming one of those "trying for a baby" people that get looked on with sympathy? I feel like I'm turning into an obsessive neurotic hypochondriac!

[willitbe]

Sorry to pop in, but I would like to ask a question I have asked on other threads to no avail.

Does anyone know the outcome of the double-blind placebo study with prednisolone?

I am desperate to find out as I am 5 weeks pregnant after 10 miscarriages and my consultant will not put me on steroids until the results of the double-blind study show if it really works as he says.

Unfortunately I think if I don't find out soon then it will be too late for this pregnancy for me to start the steroids and I really think they will make a difference for me (especially as I have had a positive ANA test, have not have NKC test though).

Sorry being long winded, any help on finding out the prednisolone study results greatfully recieved!