TTC/ pregnancy on Prednisolone or similar part 2

Been lurking too but I see congrats and hand holding are in order for scooter! Well done on clearing the first hurdle. I hope you get those answers re your new nkc reading, it does seem like you would be eligible for treatment for v high nkc - but you'll need a prescription for this so either way someone needs to look at your results and sort you out. Fwiw I wasn't retested on bfp, although I got pg within 4-5 months of my test so perhaps that's why.

kittens glad they're reffering you to the fertility clinic - hopefully the law of sod will kick in and you will turn up for tests already pregnant. Sorry to hear the misery feel never ending. Scooter's right, you are an amazing daughter. I hope you're allowing yourself to laugh and smile at silly things in between the seriousness of everything else.

snoopy welcome and good luck with starting ttc!

On the working with children link - I'm not a teacher, but I do work in kids tv so maybe the power of just thinking about kids has the ability to up your nkc count! Actually I've just always had a rock hard immune system - and I think you probably end up developing one working with snot-nosed kids or with sick coughing patients.

Had a doc appt at the AN clinic - other than a GTT at 26 weeks I won't need any further appointments other than the normal ones. From now on this is a normal pregnancy? Would you believe it!
An extra bonus - doc got the doppler out and we heard the hb. Little one was in the perfect spot for a nice clear hb and then immediately swam away, then she found it again. So another doppler dodger like ds was.

Right - who's next up for a scan? I'm beginning to think we may need a list. One for the ttc'ers so we can all help symptom spot till poas-time and one the for bfp'ers so we can gather for hand holding around scan time.

Could go something like this...

TTC
Name high/v high nkc cd#/ucl# #dpo

BFP
Digitalgirl 15+1 Due 16/04/12 next scan 7/11

But TOTALLY understand if you all think it's a bad idea - just thought with so many of us would be nice to see how many are actually pregnant on the treatment and how many are ttc.

Just quickly checking and lurking. Hope everyone is well xxx

Thank you scooter, what a lovely thing to say! I have quite a small family so am quite close to all those on my mum's side. My Dad I've not seem much over the years but we talk often on the phone and he is going through some awful stuff at the moment too having just lost his wife. I am really open with all of my family about what's been going on, pretty much from the off set so I tend to tell them as soon as I even get pregnant! Often I am around them soon after a BFP and they are suspicious if I don't drink or eat certain things so it would be hard to keep anything from them anyway. I wouldn't want to though. I count on their support when I need it and they are with me every step of the way. This afternoon I have already had my auntie on Skype asking how my appointment went, and had a conversation with my mum about it.

Yes, the flying thing is a big weight off my mind. I was really getting worried about being in a situation where I couldn't spend crucial time with my mum, especially further down the line in terms of her illness. I only hope/wish that she is still around to meet a grandchild but I fear that might be too much to hope for given the odds.

By the way Scooter I hope you don't think I was being cold by my comments about Dr S's colleague. Just trying to see it from a different perspective. The ladies I usually speak to at St Helier are usually really kind and helpful, and quite patient too usually. Perhaps you caught her on a bad day. I think Dr S is away so she may be overwhelmed with dealing with people in his absence. Why don't you have a chat with Annabel, his PA?

Havingkittens, I'm so sorry things ate so tough for you. It must be good for your mother to have you to lean on, I hope you have someone in RL too to do the same for you. That you've been able to spend time with her will, in the long run, mean a lot to you I think.
Thank you for the advice re scans. I wonder, when they were talking about fortnightly scans, do you know how many weeks they meant up to? I have my booking in (ha ha) appt tomorrow so could raise it then.

Scooter - pm'd you the numbers.

Kittens - so sorry about your mum, it must be hard being away from her.

Finally, as we all seem to be coming out with our ages, I'm 36.

kittens must be tough trying to stay positive on so many counts and being strong for your mum all the time. You must be a real comfort to her and sound like a pretty amazing daughter to me! Do you share what you are going through with her? Glad that you have the OK to fly out and be with her, must be a little weight at least off your mind.

kittens sorry to hear you've been feeling down, sounds at least they are properly on your case now and I hope your referral comes in really soon.

You're right, they do have a lot of us to deal with, and the lady I spoke to was probably having a bad day because she was just covering for the midwifery team for a couple of days and I would imagine I was one of many calls she had to field.

What is so hard is that I don't trust anyone to get it right anymore, I don't trust results to get communicated and I feel if I don't push at all the doors when I have a hunch something isn't being done, I will let this baby down too. I'm frightened it is already too late and I should have rung up to ask about my results before ttc. And dash it, yesterday I was doing so well.

snoopy thanks for the breakdown, that's really helpful knowing he gave you those figures directly. Scary to be falling into very high now, but I know I am in good company here. There I was thinking my levels had fallen and maybe I didn't need all this treatment at all! I guess that the 40mg pred has more side-effects but at the moment I'm just desperate to be taking enough and I will proudly bear a moon-face for the privilege.

choccy do you mind giving me the Epsom EPU extension if you have it to hand, I might as well book these scans in and hope for the best.

ari good point, we can only do this one little step at a time. I should be grateful that today is another day ticked off the process and just stop fretting.

Coconut - I didn't have a question about re-testing, I was trying to relate my own experience to someone else's question about re-testing!

As far as feeling miserable, unfortunately I think that's going to be the case for a good while and get a lot worse. The situation with my mum is making me so sad. I was just on the phone to her and she was telling me that the friends that visited her today stayed for 2 hours (she gets pretty tired out after an hour), but she didn't have the heart to ask them to leave because they were going back to the UK until next spring and inferred that this might be the last time they see her .

The good thing though, is that I learned at my appointment that it's fine to fly until 34 weeks so that's a big relief to know that if I do get pregnant it won't stop me spending as much time as I need to in France.

Coconut - I'm not far behind you, I'm nearly 42.

Oi, watch it, I've just turned 44, so can beat all of you I think! [hwink]

Scooter - I've got very high activation of killer cells rather than a high count ( 0.8-0.99 is borderline, 1-1.8 is high, above 1.8 is v high). Very high being the point you need 40mg of pred and intralipids. I can completely understand why you need to get this sorted ASAP. You definitely need to talk to someone to put your mind at rest.

Kittens - Sorry you're feeling rubbish. I can't help with the retesting question, I'm afraid. He didn't mention it to me at all. Hopefully someone else will come back with something.

I've just realised that I haven't actually taken my omeprazole. He didn't prescribe it to me first time around and actually I haven't had any problems so I just shoved it in the cupboard when I got the next prescription. Does anyone need a pack to save themselves a few quid? I can pop it in the post if you pm me your address.

Hello there, been lurking but not really feeling up to posting recently as I've been feeling pretty miserable and my head is a bit all over the place at the moment, so have been mostly sticking to the frivolous threads.

I had an appointment with Dr S's Clinic (NHS) today. I guess he is away for half term or something as I saw a colleague of his who was very nice. Not a great deal happened but she said she would write to my GP to suggest he refers me to the fertility clinic at St Helier. She didn't think there was a problem as my last Day 21 test results looked fine to her but she said, because of my age, it was best to get me into the system asap just in case they feel they need to give me anything to stimulate my fertility. She did say that I should be checking my blood pressure regularly whilst on the steroids, which Dr S only said I need do once I'm on them in pregnancy - ie. for longer than 2 weeks at a time. She also sent me for another blood test to check my NK Cell levels again as they've not been checked since March. She wanted to see if there had been any change.

I've not seen anyone else mention being re-tested, although most of you who have been seeing him privately have not been on them for as long as I have without getting pregnant as far as I can remember, so I don't know if they are inclined to check after, say, 6+ months.

Scooter, although she sounded shirty to you, I suppose maybe the lady you spoke to had a reason for saying what she did. I suspect that may also have a lot to do with why Dr S asked FF to remove any posts discussing his treatment as he doesn't want people coming up with their own theories on what he should be doing for them. I know it's frustrating not feeling in control of the treatment we are receiving but if you put yourself in their shoes, if she regularly has people questioning their protocol when perhaps there is no need her exasperation could well make her come across a bit terse.

Iggi I did ask the lady I saw today about having my scans (if and when I ever need them) at my local hospital and whether she could write a letter to them recommending the regular 2 weekly scans and she said that was not a problem, so it could be worth you contacting Dr S's office.

And wot Ari said

Sorry, Snoopy only just saw your post. Nothing wrong with positive thinking! The way I look at it is nothing in the Pred treatment will help me actually conceive; that's all still down to me. Also nothing in it prevents all the other things that could go wrong eg chromosomal problems. What it does do is hopefully damp down those nasty killer cells enough so they don't zap the pg. So, you're doing all you can, and that's the thing to keep in mind. :)

Scooter my NK count is 247.1 and activation is 2.11 so I'm v high too (not up to free's standard but hey!). Anything over 1.8 is v high according to Mr S's notes on my results. The treatment plan is therefore 25mg Pred from ov then 40 from BFP. Plus intralipids and all the other stuff. He keeps tweaking the treatment programme but it's available on the website as Ari said.

Def get onto them to push for confirmation and intralipids appointment if you need one but if all else fails try speaking to someone at New Life instead. Sorry you seem to be getting the brush off, it hardly helps does it?!

I had some more blood taken when I went for my bp and general check after a couple of cycles of Pred but I think that was for liver function not another NK count which I hadn't heard of before either. Maybe they do it for non-very-high people in case you need to go to higher doses?

Hi

Thanks for all info ladies. I don't know why but when reading ur replies suddenly cr*ping myself - think it's just dawning on me what I'm about to embark on.
Scooter - I got my results from Dr S last Friday morning and he wrote down the following: 0.8 -0.99 borderline, 1 -1.8 High, over 1.8 V.high. My count was 3.16 so on a BFP 40mg pred is my prescription.

I have been so positive and lookin forward to starting but think I'm gettin a bit over confident and carrried away with all sucess stories. I am 42 at the end of the day so my chances are dwindling and had 5 m/c's already.

Free I am going to Florida 15th - 31st. Well meant to be! If 1st cycle worked then I would be able to get a preg reading around middle Nov so plenty of time to have drip then plus 6 week scan would be just before we go and 8 week drip would be due a couple of days before we come back. Well that's dependent on if AF comes at date i think it will. aaghh!

But I think I will call Louise anyway. If she says don't go or something then will have to hold of the treatment until Dec. I just want to get on with it now though - every month is time running out for me.

Thanks ari too. I will definitely get on to them tomorrow, its all such a minefield of numbers isn't it!

thanks free both the NK count and NK activation level have gone over 2 now. Think she said 2.5 for one of the figures, but she was vague and didn't want to give me too much information. When I was recommended for treatment back in July, my NK count was ok but activation levels were 1.37, a treatable level apparently.

At my last appointment with Dr S's colleague, I got given one blood test form for NK levels to be taken when starting the pred and another for either post-steroids or at BFP (I have just gone in for this one). It seemed standard procedure (I am NHS) but they don't really seem to have a system for checking these results to see if anything has changed significantly so I guess that's down to me now!

Oh and I mean with 'very high' that's when he does 40mg/intralipids.

HI Scooter just a quickie as I am on my way out but I thought 'very high' was anything over 1.8 or 2.0 was it...? Mine are 3.79 so I know they were in the very high count. I think I have actually heard of some people's levels going up after taking Pred - maybe on another forum. I haven't heard of many people having them re-checked though. Are you seeing him privately or NHS? Just wondering if there is a difference and privately he doesn't get you to have more tests unless you want them.

Sorry it is a pain, it is the last thing you need I am sure.

Man this thread moves quick!

Comedy I can't believe after what you've been through, a doctor had the nerve to speak to you like that, I mean do they actually HAVE any training? I read back and broke my heart to hear about your son. I really hope you can find a GP who will give you all the time and TLC you need.

After being messed around to the point of despair, I changed to a new doctor who gave me a fifty minute(!) appointment the first time I went. So these people do exist I promise! That said, I have just had a unhelpful phone conversation with one of the St Helier people....so its swings and roundabouts isn't it.

coconut I taught Reception/Year 1 most recently (PPA cover this year) but taking a break for this term and these days making novelty birthday cakes! DH is abroad a lot at this time of year and I just decided I would rather be penniless than continue to juggle everything by myself.

So my conversation this morning was a weird one. I was told to call in with the BFP which I did and then I asked about my pre-steroid NK results because I had been ill with recurrent throat infections in August and I thought the October figures might be lower than the July ones. The midwife wasn't keen on giving me figures but did eventually look them up.

Turns out that my NK count and activity levels have increased in the period of time before starting the pred. Wasn't expecting that. Anyone else had this?

So I asked, am I on the right level of pred then or should it be higher? The midwife then says to me, right this is why we don't normally talk to you about results and sounds a bit shirty about it. She told me 'I will leave your November 28th appointment in with Dr S and you can talk to him about it then.' Hang on a minute, I will be 9 weeks if I get that far....and possibly have got that far on the wrong dose! I asked to speak to any member of his team and she explained how they are all in clinics and the only one I could speak to has to rush off straight away. My heart sank because here I am up against the same old administrative hurdles again and I really thought being in the Dr S system was going to change everything. I finally ask if someone from the team could possibly just check my levels and give me a call to reassure me that I am on the right treatment programme. She agreed to this - but I know tomorrow I'll be waiting and waiting for the phone to ring and might as well just badger them again.

Its not rocket science, all I want is the best chance for this pregnancy and someone to understand that these little questions are really really important to me. I have thought about nothing else all day.

I am on 25mg pred atm. Can anyone tell me that NK count and activation level threshold for taking 40mg? I thought I might get some better advice round here and help hold off the panic!!!!

Sorry for the indulgent post :(

Agggh! That is a nightmare!! I never knew that was a side effect of the Omeprazole. Bummer. I have a week on just the Hydroxy left so hopefully that will make me a bit thinner before pumping myself with drugs again. I don't mind putting on weight if I am to have a baby, it's just putting on weight and then miscarrying and struggle to lose it is a real bummer. I am off to stay with my 96 year old Nan for a couple of days too, which basically means a white bread, cake and biscuits fest.