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.

I think I am ok with the steroids at the moment but it could be worth getting a FR in anyway.

I am wondering if the steroids effect is accumulative - ie does the very fact we have taken them for two weeks/two weeks every cycle have an overall reduction bearing on the NK cells? Or are they just effective when taken.

I think am just being impatient :) Am bloody hungry today though, trying desperately to eat sensibly.

Did you work out what your next step is Kittens? I think last time you were going to speak to the clinic? They only gave me enough for four cycles too so I guess I might need more somewhere down the line as well. Haven't yet given the 'in case of BFP' prescription over to the chemist - waiting on WHEN I actually need it for that one.

I guess I'd better give them a call this week. I've got one cycle worth left but I don't have an "In the case of BFP" prescription so if I do get one I'll be buggered!

What was the plan for you once you get a BFP? Mine is to increase Pred to 40mcg and also start daily progesterone pessaries as well as arrange for a first intralipid infusion. But I do have laughably high cells and your plan might not be the same. Do make sure you have a prescription in place though for when you need it. As Pred is in measures of 25mcg and 5mcg I will have to take one 25 and 3 x 5mgs a day after a BFP. That and the progesterone will bring my daily tablet count to a rattling 14!

Since my last post NOT EVEN AN HOUR AGO I have been suddenly onset with a whole raft of (no doubt imaginary) symptoms including nausea. Must. Get. A. Life

Ha ha, it's amazing what you can conjur up when you are hyper aware! I have also had a whole plethora of "symptoms" including nausea, pretty much each month! Fingers crossed for you that they are real ones. Now you're going to be able to concentrate on little else until you test! May I refer you to my "bouncing off the walls, obsessing" post of the week before last? You and I are in a doubly bad position though I think, being freelance. Those with full time jobs are forced into distraction for at least a percentage of the day. Those last couple of days in my cycle were just impossible to focus on anything else as I didn't have any jobs on.

My plan is to continue with the 25mg and Cyclagest as well as all the other vits and Folic Acid. My levels are 1.45 so not as high as yours.

I didn't see your "bouncing off the walls, obsessing" post of last week, which is unusual being that i too am bouncing off the walls and reading obsessively . You are so right about the freelance/working from home thing. I am finding it so hard to concentrate today, I am at home writing with nothing to distract me except a) the fridge) b) mumsnet c) my chart.

Louise at the clinic also casually mentioned that Pred masks symptoms anyway...

I am guessing as your plan stays the same after a BFP then you don't need a second prescription like I do. My doc told me not to get the meeds too far in advance so they stay 'fresh'. But I imagine as soon as I (hopefully, one day...) get a BFP I will literally be running down to the chemist.

I think that post was on the other thread. The prednisolone was making me bounce off the walls too at that point.

I have just left a message with Louise asking what to do when my next 14 tablets run out in either case scenario so I will wait to hear from her.

I have been on to her twice today too by email :) She's very sweet though isn't she and always seems up for offering advice.

Yes, she is very helpful. Not heard back from her yet but I'm sure she'll call me when she's back in the office.

I'm off out shortly though. On my way to see Take That, which is hilarious as they are so not my thing at all, but my friend has VIP invites from her client and they are laying on a drinks reception and dinner beforehand. I'm sure it'll be a great atmosphere and a spectacular show regardless of my personal taste. Always worth taking advantage of a lavish freebie too.

Lavish freebies are unmissable! Have fun. Give Robbie a kiss from me. Actually maybe Gary, he has the songwriting talent...

I am still lurking here!

freelance I've seen some great stuff that way. A friend works at a bank that has a box at the O2 and I have been to see a few things there with him. Even if it wasn't smething I would have thought of going to myself I have had a great time. Enjoy!

Yay for returning from lurking Euro! What stage are you at now with everything?

It's not me going to Take That, although I would jump at the chance, however I have had a few freebies with a friend who works for a charity that have a box at the 02 too. It's much nicer than paying :)

I have a friend who works for a record company (different friend) who I'm hoping will be able to get me in to a few of the itunes gigs. I want to take my best mate to Duran Duran for her birthday. At our age, they were our equivalent to Take That.

LOL I have seen both Duran Duran (a couple of years ago) and Take That (pre Robbie reunion of course) AND been to seveal of the itunes things. They are really good as very small venues. The first one was at the ICA and was tiny. Oh it's nice to be distracted from work/obsessive googling... Have fun tonight!

Yes, it's great to get the opportunity to see big stadium type bands in small venues. I'm really hoping he can get me into Foo Fighters but I have a feeling it's going to be over subscribed, same for Adele.

It's so easy to be distracted working from home isn't it?

Good afternoon Freelance Kittens Digi Euro and Cheerful, hope to find you all in fine fettle this sunny afternoon. Firstly, apologies for only lurking these past few weeks. I didn't have my appointment with consultant till last week so we didn't know if trying again was a possibility or not. To cut long story short, they think we shouldn't try IVF this time but try naturally with the help of Metformin and Clomid and then start steroids and intralipid treatment once I am pregnant.

We are both a wee bit worried and confused as everyone else here seems to be starting their steroids from ovulation, not from once you get +ve on your pregnancy. (I am being seen at the CRGH and was told my NK result was 2.9). Has anyone else tried this, or should I push to start at ovulation instead? I really don't want to waste this opportunity as I don't know how many more times we can try this :(

Am happy you girls are doing ok on the treatment and side effects haven't been too awful. I was hoping to shift some weight before trying again this month but managed to twist my knee on some stairs so have been finding solace in chocolate :)

Hello gecko, nice to hear from you! That's good news, is it not, about not needing IVF? Sounds like they are positive you can get pregnant. Those are what's classed as very high levels as far as I am aware, but if it makes you feel better mine are super dooper high at 3.79. I know, impressive huh... :) I am like you and haven't heard of anyone starting once you have a bfp. I need more questions answering about this myself. Could it be that the theory is that nk cells don't kick in until after implantation? Is there anyway you can email and ask. As far as I am aware the steroids don't have an adverse effect on actual conception so could be a good reason to ask whether you can take them at ovulation, just to make sure? I know mr s says that his treatment always starts from conception and asks people not to ttc before the go to are him and get a diagnosis. I guess one of the issues here is that it is not yet ah exact science and there must be a lot if guess work and different theories. I was worried about taking mine 2 days after ovulation the other week, which is probably a bit silly as how much difference cab that make? Am out and about at the mo but try googling it and see what you come up with - when do nk cells start attacking might be a good question- from ovulation, fertilisation, implantation...? And speak to your clinic again to find out more. Hope that helps! We are always glad here to have more hard core drug fiends to hang out with :)

Soz about silly typos

Hi Freelance, thank you for getting back to me. It is all very confusing isn't it! It is definitely a relief I don't have to do IVF, although we both found it mildly comforting that we would be monitored closely as a result of that :) Instead we have just been told to go do the deed and then come back and they will prescribe treatment once we find out we are pregnant. Just can't help feel that I should be taking the steroids before implantation given what you ladies are being told. I will call tomorrow morning then post an update of what they say. Found this article which implies conception/implantation key times to take treatment, though also says it isn't really known what their role is during implantation or pregnancy.

pregnancyandbaby.sheknows.com/pregnancy/baby/Prednisolone-a-cure-for-recurrent-miscarriages-5546.htm

Happy to be hard core drug fiend friend and join you ladies on this journey.

On another note, DH and I thought we would give ourselves some cheer during this next attempt so we have bought a puppy which we pick up in 3 weeks. Soooo excited :). We haven't told our folks as they will only try and talk us out of it, and also because they might think this is us giving up on having children. Maybe part of it is because we don't know if we will get there, but we both agree we need to live life and do the things we want to instead of always putting our life on hold. So apologies if I post picture of said puppy when we get her.

Will post tomorrow when I hear back from the consultant.

Oops sorry - I muddled you up!

I am still waiting to see the NHS gynae, so not very advanced. AF got me at the weekend, so I'm on to cycle 8 of "concerted efforts" (rather than not trying too hard to prevent!). My OH should get his SA test results this week. So really not much is happening! The wheels of the NHS grind very slowly indeed.... I will probably start pursuing the private route if nothing has happened after our summer holidays in August.

Hey ladies. I saw my amazing acupuncturist today. He agrees that a 50 day cycle is really rather rubbish but wasn't surprised that St Mary's have refused me Clomid. Apparently the nhs guidelines on prescribing clomid have recently changed so that doctors can now only prescribe it to women who are not ovulating at all - not just those who have very long cycles.

I mentioned my appt with Mr S next week (who he knows well and treats many his patients), and he said that if Mr S doesn't give me anything to help trigger ovulation this cycle he will send me some Chinese herbs that will do the same trick. How brilliant is that? I'm so pleased that someone is taking my long cycles seriously.

Drug fiend? Moi?

Gecko, brilliant work on digging out that Professor Quenby article. Does anyone remember whose doctor was waiting for that info? I hope they are lurking/on here already.

Some interesting findings from there. This one I find quite worrying as it suggests we should be taking it for longer than the two weeks from ovulation:

?Although nine per cent is still higher than the normal average of five per cent, these women only took prednisolone for three weeks. In practice, they would have to take the steroid for longer before conception occurred, probably for about three months?.

And some of the other info on there is new to me too.

Talking of which ? I am going to be interviewing Mr S tomorrow. Does anyone have any burning questions about NK Cells? What would you ask Mr S if you had the chance?

And with a swift gear change ? Puppy!!! How exciting!! What flavour Puppy is it? Yes, do post a pic.

Euro, indeed the wheels of the NHS grind very slowly. I waited for my appointment for two months but in the end bit the bullet and went privately. Actually so far is has ?only? cost £500 (prelim appointment, NK cell test and one follow up appointment) but I can see it racking up. Treatment with intralipids can?t apparently be done on the NHS either and if (when??) I get pregnant I will need that at £300 a pop ? up to three times.

The acupuncturist sounds great Digi. I think I will arrange to see him after I have tested, which might be tomorrow morning. Yes it is good that he does agree that a 50 day cycle is pretty rubbish! How could anyone not ? that?s the question isn?t it. Am already excited about your appointment with Mr S next week and looking forward to see if you will then get a consignment of Chinese herbs through the post . Maybe you could pass them round and we could all come round and light them up in a big reefer, seeing that we are already popping pills like it's 1994 :)

Hey Digi, are you on metformin? I have been on this since march (actually only on full dose 1500mg- since beginning of May). This has successfully reduced my cycles from a pretty steady 46 days to about 39 days. It actually got to 39 days immediately the cycle I started taking it. I know still not really that short, but it seems pretty steady at that now. Since I came off the pill 3 years ago after 10 years on it I have gone from wild irregular and long cycle (going almost a year at once stage without an af) to regular 39 days for a good few months now.

An update on the effects on my acupuncture (well I like to think so): I had acupuncture for the first time ever on Thurs. I was due af on Tues which came. This time it was much painful and slightly less heavy- only a very very mild cramp for a short time. i actually didn't think I was going to come on as I also had no PMT, no irritability, no spots or anything. This was less than a week since the acupuncture. Could be coincidence? (sorry if tmi!). I'm definitely going to carry on with acupuncture sessions.

Freelance - I have a question you could ask Dr S-
there are Are there any typical symptoms of women with high NKcells? (For example -miscarrying at a certain point repeatedly? Do they miscarry in a certain way -e.g.growing well then suddenly miscarrying or slow growth? Lots of bleeding / pain beforehand ? etc?? also any symptoms in women when they are not pregnant? (generally not catching colds easily etc??)
Hope the interview goes well!

Great questions Charlie! Am noting them down now. Anyone else have any do let me know.

Sounds like the Metformin has done wonders really, considering your cycles before. I don't know enough about it am afraid. The acupuncture sounds fab! Great you had no PMT etc.

Testing with a First Response tomorrow morning BTW, I have no idea whether I feel pregnant or not so really am clueless about the potential outcome. I am bloated now and have some low cramping so that might be AF gearing up. I guess the one good thing would be that I would get another cycle of the Pred in, one of questions for Mr S is actually whether the effects are accumulative or just have an effect when taken.

Ooh freelance, testing tomorrow! Don't drink too much water in the night or you'll dilute your wee! What dpo will that be?

That is a v good question to ask about cumulative effects too.

I will be 11DPO and CD25, due CD29ish so it is really, really early. Digi made the point a while back though that if we get a negative early we can ditch the Pred sooner. The only thing I worry about is whether I get a negative uust because it is too early that goes on to be a positive. Oh that and worrying about every other bloody thing possible there is to worry about either it being positive or negative . Sigh. Shall I do it? If it is a negative there's no reason I can't take the Pred for another couple of days just in case.

These are my questions at the mo:

How common is miscarriage?

In your opinion is miscarriage on the increase?

What are the causes of miscarriage?

Tell me about the miscarriage clinic

The NK cells theory isn?t believed by everyone, why do you think that is?

Are there any typical symptoms of women with high NK cells? (For example -miscarrying at a certain point of pregnancy? Do they miscarry in a certain way...?)

Also any symptoms in women when they are not pregnant? (generally not catching colds easily etc?).

From my own point of view ? what is the connection between thyroid disease and high NK cells?

At what stage do NK cells start to attack a foetus?

Do NK cells have the potential to disable and maim but not kill?

What makes you so sure they stop attacking once the placenta takes over after 12 weeks of pregnancy?

Can NK cells and immune problems cause late losses too?

Is the steroid treatment accumulative - ie does one cycle help suppress NK cell levels or do they rise up again after you stop if you get the period.

Are there any complimentary therapies you recommend?

(The fluffy bit - trying to get something emotional out of it, although I imagine the emotional bit will be well covered by other people in the doc too)

What is the best bit about the job for you? Tell me some of your greatest success stories.