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TTC/ pregnancy on Prednisolone or similar part 3

993 replies

freelancegirl · 22/11/2011 16:20

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.

OP posts:
snoopygirl · 05/12/2011 10:48

Morning all,

sorry have been absent had a very busy weekend of entertaining. My dinner Fri night went ok, main turned out great but pud too sweet, was like eating a melted milky bar on top of a biscuit..too much!! Had a good sat with family round and playing pin tail on donkey pass parcel etc with kids (all very retro)!

I have been fighting over computer with son and trying to read all the posts and keep up!!
Choccy so sorry for your m/c, thank god you have a lovely hubby to support you. Just gutted for you. Ari You too, so sorry you are convinced this one is over for you. Hope you can get support from Dr S and find out some more info to help than your local EPU. scooter you are so sweet in what you said about takin one for the team as it were, bless you I hope you are recovering ok and taking time to heal. Your snuggle up in bed on Sat sounded like the best thing you could do. x

duggs sorry about bfn, perhps like you say it was best because of your over ripe egg!
sue I would love to meet up on Sat, I'll let you know. I have to check something first though, just in process of making arrangements for weekend and catching up with people before going away at Christmas. How did the Christening go? How lovely. Interesting about your temp etc....watch this space on that one.

free so pleased for your great scan and more lovely furry hugs, it's becoming a bit of a habit with you! Roll on the 13th for the next great scan!

think I'll be Oving in next few days. that came round so quick. It's the 2ww which will drag but busy so hopefully that will keep mind off poas this time.

Sorry if I've missed anyone, waves/hugs to you all.x

eurochick · 05/12/2011 11:13

battery that scan story made me feel like crying. How devastating.

sue that does sound like it could be implantation to me...

Hello to all!

Arianrhod · 05/12/2011 11:25

Morning ladies -

You're right free, we could do with the testimony of some of Mr S's successes. It's only to be expected there will be some falling at the first hurdles, there are always other issues that may creep in causing MCs that have absolutely nothing to do with NK cells etc - just natural selection, for a start. We can't avoid those, unfortunately, just hope that the next one isn't subject to the same. By the law of averages, sooner or later a good egg is going to come along. That's what I'm telling myself, anyway! You free of course have already had your one MC on the treatment, so this one hopefully is that next good egg. Well I'm rooting for that, anyway! And cheerful, yours too!

I do take great comfort and inspiration from our 2nd-trimester ladies, hoping that we will all be joining their ranks before too much longer.

Proper bleeding here for me this morning - not lots, just average start-of-AF type stuff. shrug Oh well, it's what I expected. My scan is 1:30pm on Wed - in a way, a part of me hopes that enough comes out before then so that there's very little left to see. At least I can have hope then that it clears itself out reasonably quickly - my body does seem to hang on to its pregnancies unfortunately, but I'm determined I'm not going the ERPC route this time if I can help it. I've always wanted it over and done with as quickly as possible, but I've decided this time to hope that my body can do it by itself. With the aid of the acupuncturist, yes, but that's it. We'll see.

Hugs and /waves to everyone, hope you're all doing great this morning!

iloveblue · 05/12/2011 11:27

Hello everyone

I posted on the older thread a while back but have been trying to take a step back from obsessing about it all since last mc in July.

My very brief history : late mc at 20 weeks in Oct 2010 (baby boy passed away at 17wks) - all tests, PM normal, followed by a natural mc at 7/8 wks in Feb 2011 (no symptoms/no scans) and then another natural mc at 9ish wks in July 2011 - had a few scans, sac grew and yolk sac spotted at one point but never developed.

Had tests down through my local RMC clinic - which were all normal.
My GP kindly referred me to see Professor Quenby in Coventry, who I saw on 7th Nov. She sent me off for lots more tests - some repeats but also TS3, TS4, Thyroid antibodies and Vit D. All normal again except Vit D which was slightly low (47 and should be 50). Am due to see Prof Q again on the 19th Dec - but not sure if its going to be worth the trip, not much else she can test for.

So - I'm now considering the NK cells route. Prof Q does a self-funded test for uNK cells which costs £260. We can't really afford it at the moment, but could get a small loan if needs be - I just have a gut feeling that its not NK cells.
Would it not have been evident from the baby we lost at 20 weeks and the placenta if it had been attacked by NK cells?? - we had a dating scan at 12 weeks which was normal.

I have asthma which was only diagnosed in Nov 2010 - just after we lost our first baby, but thinking about it I have had symptoms for years, and I know this can be related to immunological problems.
On the other hand, I've gone from not having a cold for ages to having two in the last three months.

I also have two healthy boys (aged 5 and 7) - had no problems at all with either pregnancy.

Prof Q said I was a 'mystery' - the fact that I've gone from being so good at pregnancy to being so bad.

I just don't know what to do next and am looking for advice.
Should I fork out for the NK cells test - even if its just to rule it out, or should we try again anyway. I'm now taking a supplement that includes Vit D and my local consultant suggested aspirin.
The other factor is my DH who has recently come off anti-depressants (Venlafaxine). I did some research earlier on in the year that showed that women on this particular anti-D were 110% more likely to mc - and it got me wondering if it could have been affecting DH's sperm.

Anyway, sorry for the waffling, thankyou for reading if you got this far. I think its just helpful for me to get it all written down - and I think I probably know what the next step should be.

I'm going to read the thread back now - I know there has been lots of sadness on here recently. xxx

xx

freelancegirl · 05/12/2011 11:46

Blue! Lovely to see you here (Blue is a thread friend from when we went through mcs together). You are in the right place for advice on NK cells. We know all there is to know! And the rest we speculate and make it up, along with most of the professionals Grin

My personal findings would leave me to believe that NK cells could indeed cause later losses like the loss of your little boy at 20 weeks. I am not sure about whether this would show in the placenta or not though. I know that one case study in Dr Beer's book says that her placenta (at the end of a successful pregnancy) looked kind of ravaged and they thought that might have been down to immune issues.

I know there are others here like battery I think who have seen standard recurrent mc clinics like St Mary's who have been unable to do anything for them at all. In fact it seems to be a running theme, which is why we have all ended up at Mr S' door. Money is a big PITA but if I were you, I would try get the money together for the test, even if it is just to rule it out. You say your gut feeling is that it isn't NK cells, and I am a strong believer in gut feelings as this was what led me to think that for me it WAS NK cells. But IMO you will not rest easily if you don't test just in case. Glad they have put you on Vit D and aspirin. Feel free to ask away with any questions! And am sure the others might be able to add something valuable too. Everyone is so knowledgable!

Ari sorry you are bleeding properly today. I guess, as you said it is hopefully a good sign that your body is going to do it naturally this time. It's still very sad though. You are being so strong. At least on Wednesday you will know one way or another.

Now, how do we find some of Mr S' graduates? The trouble is with the ones on the website is that they are all those straightforward 'got treated, had a baby' stories and none of them mention miscarrying on the treatment. The reality is however that it might not be so rare to miscarry on the treatment but that people do go on to generally be successful. When I see him I might say it would be worth having those kind of success stories too.

OP posts:
batteryhen · 05/12/2011 12:02

love - hello and welcome back. free is right - I saw my local recurrent MC clinic who after my 3rd MC was basically at a loss and said to me 'it shouldn't have happened' - and there was no reason for it to.So I self referred to Mr S - yes the money is a nightmare but I thought if I only go and have the blood tests then as least I will know. I had my gp do a lot of the bloods first so when I went to see MR S I only had to have the bear minimum to keep costs down. xx
free Can I ask - did you get any symptoms with this pg? I am 9dpo today and had really sore boobs and twinges last night but nothing today.:(

Hi to everyone else xx Sorry my story yesterday made some cry xx

snoopygirl · 05/12/2011 12:07

Hi blue,
Welcome to this thread. So sorry about your m/c's and the 2nd trimester loss that must have been truly awful for you.
I echo free in that I would try to find the money to at least rule it out. Then as you seem to have a compassionate Dr then maybe if there are high levels then maybe you could try to get the rest of the treatment on NHS? (Scans etc). Just a note the Vit D Dr S pescribed me was D3 which you can get in Holland and Barrett. Sorry don't know what the extra 3 bit is for? It's made by co called Sunrise I think.
Good luck with you decision.
x

freelancegirl · 05/12/2011 12:09

Hi again Battery. Gosh am not doing well today in terms of getting on with work! I seem to have gone a bit pregnancy/mc/nk cells obsessed again. Trouble is there is nothing left for me to google! I've read it all!

Symptoms... yes I think I am pretty sure I know when I am getting pregnant now (obviously STAYING pregnant) is a different matter. Every symptom I have had was annoyingly occasional and still continues to be. Nothing consistent. I am not sure if those with successful pregnancies and children can tell us if that is normal? Twinges are a definite sign I think, I mean after ovulation if you are not pregnant did you ever get twinges? I don't think I ever did. I sympathise - 9DPO is very frustrating! When are you going to bite the bullet and test...? I didn't get a positive until 13/14DPO.

Blue, Battery has some good points I think. Unfortunately standard medical care (once you have ruled out the blood clotting etc) doesn't seem to have an answer for recurrent miscarriage. I am not saying that NK cells is definitely everyone's answer of course but it does provide an answer and a form of treatment for an increasing number of us.

OP posts:
freelancegirl · 05/12/2011 12:10

Crossed posts with Snoopy - second that with Vit D 3. Mine is boots own.

OP posts:
Arianrhod · 05/12/2011 12:26

Welcome blue! I'm so very sorry to hear of your losses, the second trimester one especially must have been devastating. I can only second what the girls are saying - money is an issue for me too, but you know, if you don't do the testing you may always wonder if NK Cells might be your problem. I would definitely get the test done, if you can manage it.

Ditto to free, my Vit D3 is Boots own, and they have a 3 for 2 across their vitamins range, I stocked up on enough D3 to keep me going for years! Grin

ColeyOz · 05/12/2011 12:32

Free - regarding the flying. I asked Dr S this in my first appointment and he says its fine up as long as you don't have any serious clotting disorders. He mentioned that I should just have Heparin before flying. I've booked a trip to Italy at the end of the year with the possibility of being pregnant but its only 1.5 hours so I'm not worried. What distance were you going to travel?

Ari - you sound really strong. Its really tough but having the scan on Wed will probably help you have some closure and move on.

Blue - I agree with Free that its always worth having the test to rule it out given your history. You have gone through a lot with your miscarriages which I'm so sorry about and I think any answers you can get are worth it.

Sue - it could be implantation bleeding at 9DPO so def test again in a few days. I have my fingers crossed for you:)

I'm 7DPO at the moment and wanted the next week to pass quickly so I can test! Gosh I hate all this waiting!

Waves to everyone.

suemays · 05/12/2011 12:54

Hi Blue, if you can the money together for the NK testing it will put your mind at rest. If you dont and then have another miscarriage you might be thinking you should have done it. Anyway, what's £260 in the grand scheme of vitamins, ovulation kits, pregnancy tests and all the other costs!!!! I dread to think what I have spent already over the last 2 years! I also buy my Vit D3 from Holland and Barrett - they had them at half price recently.

I spoke to Louise at NLC earlier and she seems to think my bleeding was probably an early AF. The preds can mess about your cycles so she advised me to take them for another few days and do another test. I have just been on Amazon and ordered some more FRER double packs - much cheaper than everywhere else. Looks like DH and I will have to start BDing again in a couple of days just incase it was my AF as I dont want to miss another month. I am only wiping a stain away now so not even spotting. My friend told me that she remembers when I was pregnant with my daughter that I had a really bad cold and chest infection as I was moaning at the gym I felt so bad (just like now). I had implantation bleeding with her and didnt realise I was pregnant until 8 weeks as thought I had a light period. I wish I had written down more info on it now to compare. Maybe I had High killer cells back then but they were busy fighting the chest infection I had???

Battery I have been getting some twinges and sore boobs too but it could be too much food over the weekend! The preds also did that to me last month too so its impossible to symptom spot.

The Christening went well, my neighbour got absolutely plastered and a few ended back at our house after the pub. She kept falling on the floor and her kids were trying to help her up! Took my mind off everything!

Snoopy would be great if you could meet us but understand this is a busy time of year.

Free Louise said to me its more of a problem with the preds starting late if you have already got your BFP. I am just worried that taking too many will delay OV this month if I am not preggers. I am so confused with it all!

Waves to everyone else!

snoopygirl · 05/12/2011 13:14

sue
talk about confusing. I felt so sick on the pred last month was sure I was pregnant. you don't know what to believe do you?
Sounds like a funny party! Bet her kids were mortified!!

freelancegirl · 05/12/2011 13:15

Hi Ari, Sue and Coley. Yes he said something similar to me about flying being ok at first. I wish I had asked him more about whether it was the flying or the fact he didn't want me to be too far away. I have just booked a follow up appointment for the next scan for 8am on Tuesday 13th, it will mean leaving home at about 6am to get there and also DH won't be able to come! So potentially bad news on my own, which is a scary prospect. Oh well, it's not a nice prospect either way is it? Intralipids pencilled in for straight afterwards just in case it is good news.

I don't envy you the DPO waiting Coley! It's all such a huge waiting game isn't it!

Sue can't believe you didn't realise you were pregnant with your daughter until 8 weeks! How lovely to have avoided all the early stages and not to have had to worry about NK cells back then.

I STILL haven't started any work today but I did come across this thread - it's us in a parrallel universe! I think BFPSeeker might be on there and maybe Hopeful - or is a different Hopeful? Shall we reach out and say hello...? We could join forces...

www.babyandbump.com/ttc-after-loss/713725-steroid-junkies-perfectly-unscientific-medical-trial.html

OP posts:
ChoccyPud · 05/12/2011 13:28

Well I've just spent somewhere between the cost of a scan and the cost of intralipids on new clothes. Because frankly, feck it. Maybe this is what they mean by "inappropriate happiness"? Hmm

And you guys have reminded me I need more vitD3 and aspirin. Trip to H&B or Boots tomorrow then...

I'll just echo the comments and suggestions re testing that others have made. I think far better to get tested and put a game plan together than wonder, get pg, and have another mc, and wonder.

Arianrhod · 05/12/2011 13:32

ROFL! Way to go choccy, that's my kind of "inappropriate happiness"! I have just myself spent WAY too much on new Christmas decorations for our new house, and yet another present from Santa for my DD. She's going to end up with way too many toys this year but just like you, I'm thinking feck it.

cherrycheeks · 05/12/2011 13:33

Just catching up on the latest posts after rushing around all weekend with Christmas parties etc.

choccy and scooter I have been thinking of you both a lot in the past few days- your recent posts have brought a tears to my eyes. You're showing so much strength
ari I'm sorry to hear your news- sending lots of love. I hope that the acupuncture can sort things out so that you can avoid the ERPC.
lemon I'm with you on the pregnancy announcements. I'm surrounded by them! Even my hairdresser is due to have her baby at around the time I would have been due,hence the grey hairs creeping through for me!
sue I also wish I'd written in a diary about symptoms etc.. I've been in the 2WW so many times now I can hardly remember them all.
Sorry about the bfn this time duggs - following my appt with Dr S on the weekend I'm also going to try the super ovulation next cycle. I was reading your post about it in on the way to the NLC so I felt super informed about the super ovulation.
Good luck with testing this week coley battery and sue maybe there's still a chance of a bfp for you too?

Sorry to miss anyone- I'm also in the 2ww, not sure when I ovulated as I had smiley faces for a week and then stopped testingConfused I'm going to test on Friday I think, which will be 10 days after I started the pred. I'll try and find the list to update.

suemays · 05/12/2011 13:35

Snoopy I think her kids are used to it by now! Her husband was embarrassed but we just thought it was funny. Its a bit of payback time as last time we were at their house I was so drunk I kept dropping my drinks and broke one of her best cocktail glasses! Her Dh is great at making cocktails so I blame him!

Free the wait for the 12 week scan was fast for me first time without the miscarriage threat as I thought only other unhealthy people experienced that! How stupid was I? I also went to Hong Kong for a family wedding at 10 weeks so I was advised I could fly so long as I kept hydrated and moved around the plane. I had just come off the pill and conceived straight away so thought the symptoms were from that, not pregnancy! In hindsight, if I had known about miscarriages etc I wouldnt have gone to Hong Kong and chanced the long distance flight. As I said earlier, there might not be a risk flying even with our deadly wombs but you might still blame yourself if another happened.

Choccy and Ari retail therapy always works for me too!!

cherrycheeks · 05/12/2011 13:36

I think I just crossed posts x4! :o

snoopygirl · 05/12/2011 14:17

sue I've managed to escape on Sat, so I'l be there! looking forward to meeting you and duggs.

Havingkittens · 05/12/2011 14:31

Choccy, I'm well impressed with your spending spree. Good for you! You deserve a bit of cheering up.

Ari, still very much thinking of you and hoping things will be as easy as they can be this week (if that makes sense?). It might be as well if you don't end up passing your pregnancy before your scan with Mr S. Me may be able to do some tests to give you more answers as to what went wrong? Free didn't Mr S tell you off for having an ERPC last time without telling him?

Blue, good to see you. Although, obviously as is the case with all of us on here, wish there wasn't a need for any of us to be on this thread. But in the meantime, please come and join in with the hand holding/mentalling/information exchanged etc. If money is really tight, and time isn't (not sure your age), you could see if your GP would be able to refer to you to Mr S on the NHS. That's what I ended up doing. Although I am now going to see him this week privately to see why I've not become pregnant after 7 cycles of Pred. If I'd have been seeing him privately all along that probably would've happened a while ago.

Sue, I'm glad you had a good time at the christening, and that being with your friends wasn't as upsetting for you as you'd anticipated. The hilarity with your drunken neighbour sounds like a good distraction. I bet you two are a hoot on a night out!

I must confess that I am feeling a little nervous about meeting up with my two friends and their babies tomorrow, but I guess I've got to face it at some point. I think it would've been good to see them separately but one of them lives out of town and the other I don't see that often either so this seemed like a good opportunity.

With regards to 2ww symptoms, I get twinges every month around 7-9dpo. I have no idea why, but from obsessive Googling it seems quite common. I don't have sore boobs though. Then again, I've not had that symptom since my first pregnancy and that includes my 2 pregnancies which weren't miscarriages. My last one I had a feeling I was pg because I had very intense burrowing type pains which were not like any AF cramps I've ever had. A bit like a tiny drill hole being made, or a little worm (embryo) burrowing. Each time there was a different "sign". The first one, I had really bad headaches and constantly needed a wee. There were a couple of pregnancies where I got the really bad shakes and dizziness a few days before my BFP, but I can't look out for that anymore because that's how the Pred makes me feel a lot of the time! Another couple of times I had really stuffy nose and sinuses, which can be a symptom. I had really bad MS for 2 pregnancies (apparently MS can be worse with DS pregnancies, so that may have been part of the reason) but not for 4 (the miscarriages). One of my pgs I had a really heightened sense of smell before I got a BFP. So, there you go, there's my plethora of 2ww symptoms for you! Oh, and extreme thirst, tiredness, over emotional/paranoid. Now I am completely in the dark because pred makes me feel most of those things Confused

Sorry about limited personals, you lot have been very chatty these last couple of days it's hard to keep up!

Looking forward to seeing some of you tomorrow.

hopefulfor2nd · 05/12/2011 14:53

Hi ladies!
Nope, not me on the baby and bump thread. I did use to post on another site, way at the beginningof my ttc journey. Got to painful so stopped.
A little yay for me today, my GP agreed to copy Mr S meds as NHS. She says she hasn't an opnion on NK cells and is really supportive. So pleased as it'll save me some ££££
Question rg Vit D3, mines boots but the silver box just says Vit D. Is that right? Or should I be taking something else? I hope its right, the lady in the shop said it was!!!
Hi to newbie Blue!
I'm still taking in everybodyys news, apologies for no personals. Its been a rollercoaster few days hasn't it?
And in the rg to the 2ww comments - I get symptoms everytime! ( mind you I was preg 5 times in 10 months!) Pre AF and early preg symptoms are so similar its sickening! Mother nature must have a right laugh at times!!!!
HAve fun at the catch up tomorrow, truely wish I could be there. Theres got to be some setbacks about living in Devon I guess!
love and hugs to all xxxxxxxxxx

Arianrhod · 05/12/2011 15:03

Yes hopeful, that's the one I have (the silver box vitamin D) - if you look at the ingredients (if that's the right word) it's calcium carbonate, that is vit D3.

Arianrhod · 05/12/2011 15:05

And yay to you that you got your GP on board hopeful - that's fantastic, will save you a bit! :)

freelancegirl · 05/12/2011 15:15

Yep that's the same Vit D I have too Hopeful and Ari. Great news about the GP! Mine is also being really helpful, it just makes it that little bit easier and cheaper doesn't it.

Good point too Kittens for Blue re the NHS. I did eventually get an NHS appointment with Mr S as well. Battery I had all the symptoms that kittens has listed as well but likewise I don't know what is Pred and what is Preg! Both times I have started the Pred on ovulation I have got pregnant you see. I definitely had light cramping this time, post ovulation, and also that burrowing, zapping feeling. I list it all in my diary!

For some reason this afternoon I am convincing myself that the baby's not going to survive. Not sure why. Tell me, those of you who have had kids and/or are further along - are there times when you just don't feel pregnant at all?! I have been quite reassured by feeling crap for the last few days (although I realise that people do get really strong symptoms and still miscarry) but now I just don;t know anymore.

Gosh whether we are ttc, or miscarrying, or in the 2ww or pregnant it seems like we are all just sitting here bloody waiting! And on hyper-sensitivity watch for any bodily function at all.

Am off to Hastings now for the night btw, DH has a conference tomorrow morning so am going along for the night in a hotel.

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