TTC/Pregnancy on Prednisolone or similar part 6

[Arianrhod]

A positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Part 5 www.mumsnet.com/Talk/conception/1391787-TTC-Pregnancy-on-Prednisolone-or-similar-part-5

Part 4 www.mumsnet.com/Talk/conception/1366323-TTC-Pregnancy-on-Prednisolone-or-similar-part-4

Part 3 www.mumsnet.com/Talk/conception/1348773-TTC-pregnancy-on-Prednisolone-or-similar-part-3

Part 2 here www.mumsnet.com/Talk/conception/1323594-TTC-pregnancy-on-Prednisolone-or-similar-part-2

Part 1 here www.mumsnet.com/Talk/conception/1236324-TTC-pregnancy-on-Prednisolone-or-similar

kittens don't talk to me about being hungry - today i have eaten porridge, strawberries, blueberries, yoghurt, smoked salmon sandwich from Pret (second breakfast), packet of crisps (first lunch), coca cola haribo, chicken curry, side salad (second lunch), fruit salad, chocolate brownie (first afternoon tea), hot cross bun (second afternoon tea). And now home to cook dinner . It's not so much the pred for me but I get really nauseous if I am not eating - agh! Will be thinking of you testing on Monday.

dunnitt - I am still merrily accepting projects at work which need to be delivered in October and November, not for a moment thinking I am going to have to hand anything over!

duggs how are you feeling? Are you lying prone? From what I've read that doesn't make a spot of difference but I would be tempted to hang upside down!!! I had thought that since the IVF had done the work of creating an ovum and getting down the fallopian tube you might have been able to test a tad earlier than the 16th? i am getting v. impatient.

You asked what Mr S did differently: he restested the nk cells after the last mc and because the activiation level was still high (not the overall count though) he upped the pred to 40mg from bfp. In addition I have had intralipids, 75mg aspirin, omega 3 and multivit. Progesterone went up from 400mg to 800 mg after the Big Bleed. Self prescribed: selenium supplement for first 8 weeks and an extra 400 mg folic acid to take it up to 800 mg daily (that is the std dose in NZ so thought I would go with that). I'm not on hydroxy.

Thanks ari and euro what is worrying me though is that pain is only on left side quite bad and nothing on right? Weird. ari did you speak with Louise about it? Never had anything like that before.

So, hang on, PQ and Choccy both pregnant..... I'm thinking, that lunch, Digi's legacy of "Magic Pregnacare" which we all shared. By all rights that means I should be joining, you right? Talking of which, I hope scooter is doing ok.

arian i think you have a great attitude , you know your results now its up to the experts to put you on the right plan thats going to help you.

i dont think i ovulated this mth, my temp didnt do the usual spike even though the cbom told me it peaked , im also spotting , usually my period will be due on tue , so if i ovulated and i have a period 6 days later ? so weird . anyway i will try not and stess, im off the pred till june , hopefully things go back to normal.

i still have a lot of pain in my hips and knees and now back, its an effort to climp stairs and get out of a chair, honestly i feel 30 years older, and achy like i have the flu, finally made appt with doctor next thur , its prob still withdrawal from pred, ive read lots of threads of people suffering through similar stuff but im seriously fed up.

snoopy i dont remember having sore breasts due to pred, i was preg at the time and think it was that.
having kittens isnt that funny what we all find weird , i couldnt even think about doing the cyclo up the back passage ! fronts not fun either but doable for me.
pq i understand the mentalling for you should celebrate as well, somthing small just for you? youve done so well .

Evening ladies

coconut thank you for that recipe - I love a parmegana melanzane. We even have an aubergine in the fridge so may give it a go over the weekend.

ari hope mr s comes up with a good plan for you.

pq congrats on the good 10 week scan! This really does seem to be going well now , although I understand it will be some time before you can fully relax. Do you have your nt scan booked somewhere? Loving today's food diary btw!

kittens sorry you're feeling the usual non-pg symptoms, but let's just wait and see what the magic pills do!

snoopy hope you're enjoying France - are you partaking in some fine cheese and wine? I don't remember getting painful boobs till I started on the cyclogest.

choccy glad to hear you're taking some proper time off. I'm a huge believer in the healing power of not working (and long walks in the sunshine - if you're not snowed in).

Had my 'bring on labour' acupuncture session today. The acupuncturist seemed to think Tuesday would be a good day to have the baby. So let's see shall we?!

Morning all... Can I seek some reassurance? Having a bit of a worry about boobs, or slight reduction thereof. Since yesterday they've been less bruised feeling than previously, still swollen (I can feel them round under my armpits iykwim), nipples etc still look "pg" and they're heavier. I've still got the taste, getting dog tired early afternoons and by about 8.30-9pm the sleepy shutters have come down and I'm gone. It's just the boobs and less of a bruised feeling. They're still tender to touch underneath, just less so.

I know the Pred masks of symptoms and I know people find that boobs come and go its just that I really don't think I could take it right now on top of everything. I'm trying to stay as calm as I can but it's hard.

digi looking forward to hearing news from you.

PQ more great news, thinking on the positive side, I'm only 4.4 behind you... PUPO, PUPO, PUPO, PUPO......

Have a good long weekend all.

choccyi'm sorry your feeling this way, ive been there and its hard to focus , to be honest if you still feel like this next week i would go and get a scan to give you some peace of mind

Choccy I didn't have much tenderness there at all, but some days I would get this kind of tingly/pins and needles feeling and then after a day or two it would be gone - I did worry about it but clearly it wasn't bad news for me. You wouldn't be human if you weren't worrying though. I think pred may mask symptoms more as it builds up in your body.

Morning ladies, happy Easter weekend to you all.

Choccy Your symptoms still sound really strong, sore boobs do come & go so please try not to worry too much. If it's sunny where you are then have a nice long walk (as Digi suggested) and maybe finish off with a pub lunch. Or if it's miserable weather how about a trip to the cinema, anything to distract you from mentalling! I know I'm being thick but I can't work out what PUPO means?

Ari I don't know much about numbers for FSH but it sounds like you have done your research pretty well anyway. What I would say is that you have got pregnant very quickly in the past so there is no reason why you shouldn't again. I supposedly have normal FSH/LH yet it has often taken me around a year to get pregnant so there's more to it than just the numbers. A lady on another thread I'm on had just been told that IVF was her only option after an awful AMH result. She missed her usual SWI window due to having an HSG and then had one SFF on CD20 - bingo, she's up the duff! Just shows that all of these results are just a guide, anything is possible

PQ Great news on the scan! I'm loving the multiple meals, anything to keep the sickness at bay I say!

Pico Sorry to hear you're feeling so achey and crap, hope the GP appt is useful.

Digi Tuesday it is then! At least you can enjoy lots of chocolate eggs over the weekend which will give you the energy for labour

I don't think we're in with a chance this month. I was really poorly yesterday with D & V - bleurrgh! Still feeling delicate today. We SWI CD11 & 12. Today is CD15 and I usually ovulate CD16 so I suppose we might have a chance if I am feeling up to it later - not sure it will be the most romantic of liaisons though!

Thanks igggi that makes me feel better and it certainly makes sense about Pred effects building up, I've been on it 4 weeks 1 day now.

X posts olives PUPO is Pregnant Until Proven Otherwise

Hi everyone, well I did the test (Clearblue digi) as DrS advised 10DPO and I was excited to see 1 to 2 weeks prg. I am so excited but what does this really mean. Could it be a false positive due to the SO drugs? I guess it is better than a BFN but I am unsure if I am or not. I guess I will only know for sure in the coming days. Have a great day everyone. I guess I am now in the PUPO stage .

choccy I think it sounds like you've still got so many reassuring symptoms - which is more than I had. I only had boob 'heaviness' and I put that down to the cyclogest. I know it's difficult but if you can try to put your faith in the drugs ie the pred will mask some symptoms and the cyclogest will maintain some. This way you just sit back and let them do their job. Are you already further along than you were before the spotting started last time?

greenolives hope you're feeling better soon. Don't forget illness can delay ov - so you may have a few days grace.

Feeling absolutely enormous this morning. Had a lovely venison casserole last night followed by rhubarb & apple crumble (homegrown rhubarb) - but there isn't enough room for that and ginormobaby.

Ah! I see, thanks Choccy. You are indeed PUPO so keep chanting that today [busmile]

Abney Congratulations! Great news [bugrin]

As you can see I am enjoying the Easter emoticons!

X posted abney congratulations!! I'm not too familiar with the minimum testing times on SO, but if mr s said test from 10dpo then must be beyond the false positive timescale. Do you start the pred today then or are you already on it?

abney Hello!! Did you test to get a negative first to see if Ovitrelle is out of system?
Think I could be in Timbuktoo and would still be posting here - I'm addicted
pq congrats on reaching past the critical Dr S 9 weeks so pleased for you.

I don't know what's happening with me I'm think i'm 16dpo and still no positive line but no AF! What 's going on? Soreness/pain gone a bit on left boob now which pleased about.

Yes digi had some (part slab) brie earlier in week and some expensive posh macaroons (overrated) but trying to lay off it all as getting so bloody overweight and using 2 week off pred to slim down a bit. Depressing when in France with all this lovely food.

I'm 6.1 today digi and started spotting last time at all of 4.6 :)

I think having spent all day yesterday on my own while dh went to work, I've gone into a bit of a slump. It was miserable weather too, and I didn't feel like dragging myself out for a walk in the rain! Am out and about today andlooking forward to a walk in the sunshine and am sure that will help with perking me up a bit generally.

snoopy do you think travelling delayed ov? You're not on cyclogest yet are you?

choccy well you're doing fabulously at 6+1, or as I like to think 'halfway through the 1st trimester'. Enjoy that walk.

Well, have gone from Don't Want to Eat Ever Again to Bloody Hell I'm Ravenous. All in the space of 5 minutes.

Ha ha loving your eating habits digi!

I didn't take Cyclogest this time as womb lining at scan measured 10mm which was good and better than month before. I don't think any travelling delayed ov, as had the trigger shot to force it and that was on cd11 and the jab works about 12/24 hrs after if I remember rightly.

choccy I hope the weather is nice and sunny for your walk. ((hugs)).

Agh! So much to catch up on and so little time! First of all Abney, a cautious congratulations re the positive text. You could well be pregnant! I have no idea about what might be the after effects of the SO drugs so can?t help you, but surely a 1-2 weeks on a digi is a sign of being pregnant?? What do you need to do now ? are you going up to 40mg and having intralipids or just carrying on as you are?

Choccy I think Digi is right and you do seem to have quite a lot of reassuring symptoms. Boobs for me were definitely only tender on and off and then after about 7 weeks nausea kicked in and after that it was on and off too. Remember me posting some days saying ? help, I feel good today! I have asked people who have had successful pregnancies (probably quite a few on here) and there is just no way you are going to feel fully pregnant all of the time. I still get it now ? times when I haven?t felt the baby move for a while and then it comes back and I feel ok again. When are you due for a scan/docs appt? If you are over 6 weeks just about it might be ok in the next few days ago to go get that scan.

Snoopy, glad you are having a nice time in France and indulging in some forbidden fruits as it were. I have no bloody idea what might be going on at 16DPO with no BFP but I know my BFPs have always been quite late ones.

Digi, your domestic prowess puts me to shame. Can you start writing books about it please? Home grown rhubarb? How marvellous. Another friend of mine at your stage in pregnancy (she had a baby last week) described those last few days as ?feeling full of baby?.

Well done for being such a trooper and continuing with the SWI despite the D&V Olives actually I had to really thik about what D and V might be, but got there in the end

Sorry you are feeling so rough still Pico, how long have you been off the Pred now? I had strong withdrawal symptoms after stopping Pred after mc but yours seem to be going on quite a long time now. I am glad you are going to the docs and I hope they can clarify something for you.

PQ, am loving your run down of food for the day don?t worry ? I am packing it away too. Two breakfasts seem to be the order of the day these days. That is such great news about your final scan at the EPAU. It?s a huge milestone! I will be in touch to arrange a date to come round to yours armed with some holiday clothing, could probably make this coming Friday as I get back on Thursday afternoon.

Duggs asked what Mr S did differently and for me, after having a mc the first time on the Pred, he just added the Hydroxy. What I did different was, like PQ added Selenium.

Dunnit and PQ I think we can all relate to the non-relaxing thing ? the goal posts keep on moving for me too. It was 12 weeks, then 16 weeks (holiday was at that point), then 20 week scan, then 24 weeks ? which I passed this week. I think what has been reassuring was firstly having a Doppler so I could hear the heartbeat from after the 12 week scan until I started feeling proper movement around 20 weeks. I still get it out occasionally now. I would fully recommend getting one although I know some people (Iggi I recall) feel they can cause them more anxiety as on occasion they can?t find the heartbeat. I know it is too early for PQ to have one but maybe it's something you might think about Dunnit? The Angel Sounds one is only about £20 on Amazon.

Now I have reached 24 weeks I am not sure when my goal post of relaxation has moved to! I am more relaxed in that I have had a look around some baby shops and spoken to friends about birth and having a baby (was out with an earth mother friend of mine yesterday who has just had her third, she has also had mcs so is very easy to talk to) but half of me still says IF I have the baby rather than WHEN. I wasn?t able to hold my friend?s baby yesterday ? too tiny! He is only a week old and still very fragile. DH and my mum held him though and everyone laughed at me for not wanting to do so

Kittens ewwww too in sympathy for the cyclogest. I hated it too. I hope you have worked out your levels, it is all very complicated.

I want to update the list but I am not sure what to do about a couple of people ? Abney, not sure whether to move you to the BFPs yet and Snoopy not sure whether to move you back to TTC yet. Anyone else need changing??

Waves to anyone I have missed.

I think my brain failed at some point there and I really struggled to add three days to some of us in the 2nd trimester! So if anyone spots any mistakes please change! I have left Abney and Snoopy where they are for the minute, we can change when we know more in a couple of days. Anyone else please feel free to change/update.

Friday 6th April

The babies are arriving!
Stogan - V high NKC - cycle#2, DC#1, Baby girl born Sunday 11/03/12 7lb13.5. Our First Pred Thread Baby!

BFP
3rd Trimester
Digitalgirl - High NKC - BFP cycle#2, DC#2 38+4 Due 16/04/12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 35+4 Due date: 07/05/12
Comedy - V High NKC - BFP cycle#2, DC#2 ? 34+6 C-section booked: 14/5/12
Iggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- 32+3 c-section booked for 21/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 32+0

2nd Trimester
Freelance - V High NKC TTC#1 Hydroxychloroquine, Pred, Intralipids, 400 Cyclogest, Thyroid/hashimotos. MC 1st Pred cycle. DC#1 24+3 Next appt with Mr S, 19th May
Cheerfulcharlie - V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 24+2
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 21+0
coleyoz - V High NKC. DC#2, BFP cycle2, 20+5
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 16+1
Mercator - V High NKC, TTC#2. 16+1
Hopefulfor2nd - High NKC - TTC#2. - 15+1
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 15+1

1st Trimester
PQ77 - V High NKC TTC #2 (BFP cycle one but mc) 10+4
ChoccyPud - V High NKC - TTC#1 from March (Pred & Hydroxychloroquine) 6+1
London - High NKC, add details!

TTC
Waiting to test
Havingkittens - Upgraded from High to V High NKC TTC #1 2nd cycle SO - testing 9th April
Snoopygirl - V High NKC TTC, pred cycle 5, Super Ov Cycle 2
Abney, V High NKC, TTC#2, super ov.
duggs1976 - High/V High NKC - TTC #1 - IVF cycle Testing 16th April

TTC
buster76 -V High NKC, Factor V Leiden.
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
BellyD - V High NKC, MTHFR homo, TTC#1 cycle 2, hydroxychloroquine
eurochick - TTC#1 High NKC, pred cycle 4,
Willitbe - RMC, NKC not tested, TTC #4 cycle 2 (after m/c 12) Fertility consultant prescribed pred.
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, combining IVF with Immunotherapy
GreenOlives - High NKC, TTC#2, Pred Cycle 2
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine)
Cherrycheeks - V high NKC, TTC#2
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Breezyweezy - V High NKC - TTC#1
AandRmum - High NKC
Cornflakes30 - V High NKC, underactive thyroid
picolina - V High NKC MC on treatment
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2
Zoeella V.high NKC, Factor V Leiden. abandoned IVF, pos PCOS
Suemays - V High NKC, TTC #2. Superov. (Pred & Hydroxychloroquine)
Holldoll - High NKC - Pred, Cyclogest & aspirin

choccy my boobs hurt a lot in my first 3 pregs, noneof which were successful, this preg my boobs hardly hurt at all and I'm 15wks. Maybe due to the drugs, I don't know. Every preg is different. I also know from experience that the boob tenderness hangs around for quite some time after a preg has stopped being viable. So if your preg was no longer viable your boobs will not have reacted that quickly I don't think.

Digitalgirl I have upped the pred to 40 this morning, taken the fragmin (blood thinning) and the usual stuff.

Snoopygirl No I didn't test for a negative first. I wondered why everyone seemed to be doing loads of tests. It sounds like a good idea.

Freelancegirl - yes I have to be very wary that the BFP could turn into a BFN. If I do the test again tommorrow and it is still BFP then I will need to call Dr S about the intralipids. I want everything this time.

Short recap on history - age 44 DS was number 7 pg (previously 1 Edwards Syndrome, 1 Molar, 4 straight MC's (some of these heartbeat then no heatbeat. NKC not detected i.e. not an issue. 4 more MC's after DS. VHKC discovered after the 2nd mc. Some heartbeats and then no heartbeat and some too early to tell.

What is Hydroxy and what is Selenium? When I asked Dr S if there was anything else I could have he looked at me as if I was mad.

Leave me down as TTC at the moment on the leaderboard.

Hydroxychloroquine is another immune modulator that (I think) Abney is generally given to people with other autoimmune conditions such as lupus, arthritis and colitis but has not until now been used for NK cells issues. Mr S started to experiment with it toward the middle of last year (as far as I can work out) as there is one girl under his care who is probably due around now who has been taking it all the way through.

I think I am his second patient on it (well, on it and staying pregnant so far) and he gave it to me in September to start immediately. I was on it for a couple of weeks before getting pregnant (LMP was 18th Oct) and might well be on it for the whole pregnancy. I have very high levels (3.79) and he thought, that after another mc first time on the treatment, this might be a worthwhile addition for me. I was also taking the 40mg Pred, Cyclogest, aspirin and usual vits. I had intralipids at 4, 8, 12 and an extra one at 16 weeks. Since my early success on it he has also put another few people on it (some here). It is a much nicer drug than pred, although obv we took that too, with much less side effects. It might well be worth you asking him about it, especially given your awful history.

Selenium is something I have added myself, found via lots of Dr Googling (and others here like PQ did too) as it seems to have a good effect on pregnancies in various ways and in some studies seems to have helped prevent miscarriage. I was told to take Selenium supplements years ago (along with Vitamin D) by a thyroid doctor as both these things can (and had been shown to be in me) be low in thyroid patients. Rather stupidly I never really bothered taking them. I forget how much I take but I think, again Dr Google, indicated that around 200mg a day was a good dose.

I think it was Merc the other day who asked about when people took pregnancy vits until. I can fully identify with being sick of taking tablets - they are all so big too! I know some people have stopped taking them at 12 weeks as Mr S suggests but I have carried on. I think it is perfectly fine to stop though. The meds I am still on are as follows:

AM: 200mg hydroxychloroquine
Mid AM: 75mg of Aspirin (Mr S says stop this at 20 weeks, I have held on a bit longer and will prob be stopping when back from Spain next week - 25 weeks).
Mid AM: one iron tablet (added last week as was low in ferritin)
Dinner time: Pregnacare Plus Omega 3, Vit D, Selenium, another iron tablet
Bed time: 125mcg thyroxine (have been on this for years.

Hope that helps!