TTC/ pregnancy on Prednisolone or similar part 3

[freelancegirl]

For those who are TTC/pregnant undergoing immunotherapy treatment. Current list as it stands, do feel free to come and join us, it's moving quickly round here!:

Tuesday 22nd November

TTC
Waiting to test
Snoopygirl - V High NKC TTC, will be Ist try with Pred, Intralipids on bfp Testing from 21/11
Havingkittens - Upgraded from High to V High NKC TTC #1 after 2 month break/testing 29 Nov -2 Dec depending on my resolve.
Waiting to ovulate
coleyoz - V High NKC. TTC #2 - ov 3 Dec (Pred and Intralipids at BFP)
duggs1976 - High/V High NKC - TTC #1 - Superovulation cycle1
batteryhen - High activation NKC, factor v leiden. TTC#1
Suemays - V High NKC TTC/ov 30th Oct. TTC#2.
Cherrycheeks - V high NKC, TTC#2/ ov 25th-26th Nov/ 4th cycle of pred
pureequeen - High NKC TTC #2 again from November (BFP cycle one but mc)
eurochick - TTC#1 awaiting first appointment (in Nov)/ov expected 28-30 Nov.
BFPSeeker

BFP
2nd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 24+3 Due 10/03/12 next scan 30/12
Digitalgirl - High NKC - BFP cycle#2 -19+1 Due 16/04/12 anomaly scan 23/11
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks ? 16+1 next scan 14/12
Comedy - V High NKC - BFP cycle#2 - 13+3 due 26/5/12 next scan 12/12
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 12+6 anomaly scan Jan

1st Trimester
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP on cycle 3 of Clomid - 11+4 next scan 28/11
Scooterchaser - V High NKC - BFP cycle1 - 8+1 Due 01/07/12. Scan 25/11
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. LMP18/10 - 4+6 - Scan 3/12
Arianhod - V High NKC, MTHFR homo, hypothyroid, TTC#2 BFP 2nd pred cycle LMP19/10. 4+5 Scan 7/12
Cheerfulcharlie - V High NKC, MTHFR/TTC 1/ (metformin, intralipids, no pred). LMP17/10(Ov'd 3rd Nov) 4+5 Scan 6/12.
ChoccyPud - V High NKC / TTC #1 BFP 4th Pred cycle LMP20/10 4+4. Scan 3/12.

Arian it is interesting to see your numbers. They are fairly similar to the results I got on Monday (412 absolute count with borderline activation at 0.92). Those results got me the High protocol.

What sorts of results did other people have? I know people have posted as and when they have got their results but it might be worth adding these stats (as we are stats collectors on here). How about something like this?

Name/absolute count/activation
Arianhod 471 and 0.83
eurochick 412 and 0.92

Please add on your own results if you would like to! Once we have a list we could add it to the bottom of our other stats list?

choccy my cycle came back to normal pretty much straight away after the pred - maybe two days behind where it should have been.

Have also had the most horrendous head cold, first cold in about 3 years, so maybe the pred weakened my defences! though as I mentioned before I am one of the lucky ones whose NK cells went up when I was pregnant so I have to go on the 40mg dose + intralipids next time.

Scooter you have my sympathy about family insensitivity and i can't believe you are expected to go to DN's nativity plays - that's beyond the call of family duty!

Ah yes euro, but that was only after a few weeks on 40mg pred. My non-pred was actually activation count of 1.83 (don't have my original activation count to hand right now). Would be interesting to see what everyone's results though, if peeps are willing? Just in the interests of statistics, I love a good statistic :)

Will post mine properly later when I get home and dig out my original results.

Bugger, I meant "don't have my original absolute count to hand" since I had of course just quoted my original activation count. Finger fatigue!!

Free fantastic news on the scan - one day out is nothing to worry about!

Battery have you had any news yet on the HCG? Worrying time for you but hopefully the little bean will hold.

Comedy are you going to find out the sex?? How exciting!!

Scooter I cant believe your sister - normally siblings are a bit more understanding so I am really shocked. Nobody seems to realise that miscarriages cause you to grieve like any other death. You can't just 'get over it' in a few weeks! Unbelievable!

Isn't it weird how through all of this, some of us have had family members act in a very strange way and be insensitive. There's nowt stranger than folk as they say.

Ari interesting that the steroids have had an effect on your count. I did wonder if that would be the case as they say the longer they build up in your body the better.

Coley I am exactly the same as you with the steroids messing up my cycle. I was convinced last month I was preg as had what I thought was a day of implantation bleeding at CD 21 but it turned out to be an early and light AF. Before taking the preds, I would have a regular cycle and fall in the first month. I am now on month no.4 and no sign of a BFP. I am going on the superovulation plan (thanks to Duggs advice) and have an appointment at NLC on wed 21st. Knowing my luck I will get a BFP after paying for the appointment and prescription!

Scooter I know you said you lived near NLC so I am there on the 21st if you are about? Is anyone else there next Wed??? My appt is 3.20pm.

Cant remember if it was Cheerful who had a good scan over the last couple of days but well done if it was you!!

Does anyone know how to delete the info TTC/preg box at the top of each page as it is out of date??? Free I think it is one that you posted??

scooter it is an odd reaction. As Arian said, it is a bereavement and people need to let you deal with it.

Sue I don't think you can because it is part of the OP. Maybe email MNHQ?

Arian it is good that the pred seems to have lowered your activation level.

Name/absolute count/activation
Arianhod 471 and 0.83
eurochick 412 and 0.92
Suemays 334.3 and 1.9

Euro I am guessing its when the post was restarted by Free. There are ladies showing there in the first trimester that miscarried recently so just thought it was better to change it! I know I wouldnt want the reminder at the start of every page.

Battery - just wondering how you are hun? Have you received your blood results?

sue - I've decided to stop taking the pred altogether and try my luck without. They are just having such a bad impact on my cycles and my ability to get pregnant. I'm still waiting for my period 6 days after stopping which is ridiculous. They are completely redundant if I can't get pregnant on them! I might consider taking from BFP but will see. I'll still have the intralipids.

I may consider this superovulation plan in the future if I'm still not pregnant in a few months:)

For the stats:
ColeyOz/132/2.40

It was the first post of the thread - I'm not sure it can be edited? But if it could, only free could do it ... however, I know I cannot edit posts I've made (otherwise there wouldn't be so many bloomin' typos in my posts!!), so I'm not sure it can be changed? TBH I tend not to read that first post anyway, I just skip past it.

Sorry - added to list below:

Name/absolute count/activation
Arianhod 471 and 0.83
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40

I thought that might be your concern, sue. I think only MNHQ can edit posts.

Altered a little:

Name/absolute count/activation
Arianhod ?? and 1.83 / 471 and 0.83 with 40mg pred
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40

Ari glad you don't take too much notice of it! Let's hope no-one else does either.

Coley I did consider stopping the preds but I would blame myself if I lost another baby but everyone is different. Maybe our bodies were acting abnormally by getting pregnant so quickly and now that we are on the steroids we are acting normally. Bearing in mind most 'normal' people take a few months to get pregnant. Do you think our expectation of getting pregnant straight away is unrealistic? I don't think I OVd last month so being on the superovulation plan will change that. My 1st cycle on the preds was around 6 days late too so I was sure I was pregnant! It's such a headf*ck!
Are you sure you are not due a late BFP as you could have ovulated late?

Don't worry about the top post I just scroll past and ignore.

We nearly need a new thread anyway. I'd still have a "title" post so others/lurkers can easily see where we all are. Yes there's a lot to scroll past but it gets me to the chat which is far more important to me!

And - families eh?! Grr.... Maybe someone should produce a fact sheet for distribution to family upon Pred mc re all the emotional side and the time it takes just weaning off Pred. Or a pro forms email so we don't all have to write it all out to tell them in words of less than one syllable that it is not like flicking a switch nor is it "boring" that we're still not ourselves after a couple of weeks. And caveats re last minute cancelling of babysitting arrangements. Just by way of a couple of examples :)

Choccy we should get Duggs to do a fact sheet. She will be whipping out her little notebook to jot everything down!

I hope my last post doesn't sound uncharitable. I know lots of our friends and family are brilliant and understanding so I'm not generalising. Nor do I want to appear ungrateful for the support we all do get. It's just that I guess the lack of empathy from those supposedly closest to us is often more hurtful because they are close to us.

Hope that makes sense.

Interesting point about how our bodies behave re getting pg and recovering. I think the short answer is we will never know unless we had blood tests every other day or something for all the hormones. Yeah right...

Name/absolute count/activation
Arianhod 471 and 0.83
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40
scooter 200 and 2.7

Don't have all my figures written down anywhere but above are the figures I was told over the phone (taken at 4weeks pregnant in Oct). Out of interest I looked up my July readings, count 170, activation level 1.37. I then had them taken again at ovulation in Oct when they had increased to an activation level of 2 (can't remember count) but I have listed my readings when pregnant because that was most recent. I think a few of us (PQ and kittens?) tipped from high to very high recently.

Hi all - really feel for you regarding relatives and understand what you are saying Choccy - so sorry scooter that they are not being more understanding - it is such a horrible time as miscarriages aren't merely physical they are wrapped up in hopes and dreams and it takes time and energy to rebuild these. For people on this thread this has happened over and over again and you deserve so much more support and encouragement than you are getting. Hope we can all compensate for that a bit.

I saw mr S today and am now officially signed off and joy of joys can stop the night time insertions of cyclogest. Scan all fine, took DD so she could see new baby brother/sister and Mr S thinks sister although very inconclusive and so won't be buying anything pink until after the twenty week scan!

Woohoo comedy, that's fabulous news!!! Marvellous you've been signed off, that's brilliant.

Agree with everything you say choccy, and you don't sound uncharitable at all. I stand by what I said, a miscarriage is a bereavement, and should be treated as such - with sensitivity and sympathy, and most certainly by one's nearest and dearests.

Comedy it's great that you have been signed off!

Choccy I agree with Arian. It doesn't sound uncharitable at all. It is not unreasonable to expect a little sensitivity from friends and family over an mc.

Aggh! I just can?t keep up! So busy here.

The list is an old one at the top of the page as the thread always keeps the opening comment in place. When we do a new thread we can make sure not to have the list on it. I never see it as I always go straight to ?threads I am on?. We are probably about to chat ourselves to close to 1000 posts again soon anyway.

First of all been keeping an eye out for battery?s updates. So sorry you are in limbo. I have heard that tests done in hospital are not actually always as string as say FMU ones.

Sorry too to be the reminder for Choccy and Ari about intralipids. I have said this before but I too have miscarriaed when others have gone on to stay pregnant and it?s so strange seeing where I would have been. Of course there is time yet for me to miscarry as well. I guess the great thing about having us all here together is it is incredible to have all the support, but it is also going to remind us of what can go right and what can go wrong. It's good to bear in mind for all of us what can go right! But I know I personally, at this crucial stage, keep thinking of all the stories of it having gone wrong at 8-9 weeks, particularly with Scooter. So having all our stories together is a double edged sword! But, in the main a supportive and constructive one of course.

I felt really tired yestrday evening and was actually in bed by 10pm, not sure if it was the intralipids or just the whole bloody day. I had 9 hours sleep though so think that helped. Not feeling bad at all today (cue lots of mentalling!).

In answer to your other question Choccy my cycle was back on track four weeks to the day I started bleeding on my Pred MC (I started bleeding a few days before ERPC). Hope yours is going to be nice and regular too.

A bit shocked on your behalf about the attitude from your family Scooter. What a rotten thing for you to have to contend with. I got the Moonface thing after coming off the Pred after MC too! And also that vibrating thing in my lip. It first manifested itself in my bum which was really really strange. I thought I was sitting on a mobile phone.

I am a bit confused about the NK cells count and absolute count thing, but will have a look at my letters and see what I can find. I know he was concerned about my levels being so high but I only remember the 3.79 figure. Vey interesting to see yours did actually go down to an almost normal level Ari!

Oh, just looked at the letters I have from him and it only gives me the 3.79 figure. I wonder if I can get it from the clinic.

A huge virtual hug to Comedy for coming off the treatment!!! Oh my gosh, you have graduated from Mr S? school of hard core drug action!! It?s incredibly brilliant and so inspiring for us all to see. Team Possible Pink sounds beautiful. What a milestone.

I have actually had another scan myself today. It was the appointment at St Mary's, scheduled a few weeks ago. I wanted to keep it as I didn't want to fall of their list but I felt nervous and tempting fate to go again. My ideal would be to have Mr S one week and St Mary's the next but due to Xmas dates that is not going to happen. Anyway, heartbeat still there and measuring 8.3 according to them (Digi you were right in telling me that Mr S measures slightly smaller. They want to see me again on the 4th Jan. So until the 23rd Dec (a week on Friday) that's it for scans for me, unless something goes wrong of course.

Like I said, feeling remarkably unpregnant today. Sigh. I know I know, symptoms come and go. Am off out to meet my 'miscarriage friends', met here on mn when we were all going through the same thing. So it will be good to have tea and cake and again the sort of real conversation I can have with you ladies too.

Really hope everyone is ok today and hopeful for good news from Battery.

Yay Comedy! Glad to hear you've been signed off. I love hearing these good second and third trimester stages particularly. It gives us all hope.

scooter cannot believe your sister said, or even thought that. It's funny that with some people it's like they get fed up of sympathy after the first one and expect you to snap back quickly. Why would the fourth m/c be any easier than the first?

Which Absolute Count are we quoting here? On my results sheet I have one that says 'total NK absolute count' and one that says 'NK (dim) absolute count'. I have assumed it is the former, if not let me know and I will change my results:

Name/absolute count/activation
Arianhod 471 and 0.83
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40
scooter 200 and 2.7
Cheerful 473 and 2.11

Interestingly I have also been experiencing a bit of buzzing in my left hand in the past couple of weeks on and off but only very mildly. I am not even on the pred! i wonder if this is also an effect of the intralipids? or something entirely different (including the possibility of my imagination).

free these measurements can really be a bit out depending on the machine they use. Yesterday my doc measurement me at 6 w 5 days. I freaked out then she said it might be in a funny position and the machine was not the highest resoultion. Then she shifted it a bit and managed to measure 7 wks 3 days. I was still not convinced so kindly she let me have a sneaky go on the better machine used for NT scans which showed it very clearly and measured 7 wks 5 days which was spot on i thought. When they have a crap machine, they are more likely to measure it smaller i think because the outline is fuzzy and they can't always see the the outer edge of the baby/ fetus thing.

Name/absolute count/activation
Arianhod 471 and 0.83
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40
Buster 272 and 4.11

scooter I find family and friends can be insensitive because they dont know how to cope with it, so brush it under the carpet so they dont have to deal with it or talk about it. I dont know about you but I want to talk about it, I'm not embarassed about it, its a huge thing to happen to anyone. I just think RL people would never really truely understand unless it happened to them.

Hope your scan went well comedy.

xx