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Original poster

TTC or pregnancy on prednisolone or similar part 12

999 replies

teamdozie · 24/12/2013 17:42

This is 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!

OP posts:
freelancegirl · 08/02/2014 13:25

Such good news on here recently! Team, 9 weeks is a huge milestone. Mr S has been known to say he thinks it's more important than 12 in terms of being a good indicator everything is going well.

Willitbe, great news too! And Tum as well. Can't help you with Clexane but I would just go with what Mr S says in this case.

Waves to Clabbage too, so glad to hear all is well.

And so chuffed to have Cheerful back! We've emailed each other already (old Pred thread friends and had our babies at the same time) and looking forward to hopefully hearing news about successful scans for you too.

Hello to everyone I've missed.

bakingtins · 08/02/2014 14:13

tum I took clexane until 12 weeks. If it's for a clotting problem you need it all the way through, if it's to help the developing placenta it's job is done by 12 weeks.

Tumtimes1 · 08/02/2014 14:39

OK thanks baking and Free. I will see what my nhs consultant says. If it doesn't hurt then I would be happy to keep taking it, but will see what he says. Baking was it 20mg you were on did you say?

Yes just to echo free - Mr S actually said to me today getting past 9 weeks leaves a 1% chance of MC.

VillageMum · 08/02/2014 18:14

Hello Charlie and wishing you all the best for this pregnancy!

VillageMum · 08/02/2014 18:19

Oh and Tum, in the past, 9 weeks has been the magic milestone for me too - interesting to hear it confirmed by Mr S!

bakingtins · 08/02/2014 19:02

Yes 20mg clexane.

Original poster
teamdozie · 09/02/2014 09:38

Morning everyone!

Village no appointment yet! Have to wait for the hospital to get back to me! I self refer to a hospital outside my area as the one in my area is horrible! Still can't believe it's being processed!

Free thanks for the info! I so hope that is the case! I'm still struggling to believ this is happening! It's probably my way of coping and protecting myself! But I'm starting to get excited!

Tum that's brilliant news about scan! I've not told him I'm seeing people on the NHS because I know he can be funny about it but the NHS are happy for me to do what he says! Re clexane I'm on 40mg twice daily till 36 weeks so I suppose everyone is different!

Cheerful congrats on your pregnancy! And welcome back!

Waves to everyone!
Xx

OP posts:
Tumtimes1 · 09/02/2014 09:42

Hey team thanks for the info. Is that for factor V did you say? x

Original poster
teamdozie · 09/02/2014 09:58

Hi Tum no it's as a precaution due to my late loss at 20 weeks! I have no blood clotting disorders!

X

OP posts:
tannyLoo · 09/02/2014 11:40

Hi there.

I wonder if I could get some advice. I am 5.5 weeks pg and think I'm possibly heading for my 5th mc at around 6wks. My symptoms are dropping off one by one. I'm taking aspirin and progesterone.

I have 2 dcs, youngest is just 2. Was diagnosed in Jan with super fertility.

My blood results came back yesterday with (pre pg) high IgM, and I have been asked to repeat the test in April, but my consultant doesn't know about this pg. This all might suggest APS or something similar.

I've been wondering if I can get them to explore my nk levels too, as it feels like every pg is going wrong much earlier than I actually mc.

So, has anyone had nk investigations done on nhs? Or has it only been if you live in Warwickshire? Has anyone been prescribed pred by local consultants?

I feel at a complete loss. Part of me just wants to give up. I'm feeling old and tired and totally overwrought by the last year. Five goes at getting and staying pg say different.

Sorry for the long rambly post.

freelancegirl · 09/02/2014 12:17

Hi Tanny, sorry for what you've been through. You can see Mr S on the NHS via St Helier or Epsom hospitals. I had asked my GP for a referral there and she was happy I arrange it despite me not being in that area. As it was I felt I was in more of a hurry (had several mcs and no DCs a this point) and arranged to see him privately rather than wait a few months on the NHS. In the scheme of things, having already had all the clotting and standard NHS tests done via my GP, I felt it was not a lot of money to cobble together. But yes you can definitely see him on the NHS. Not sure about the others as he was who I had my little boy with on the treatment.

bakingtins · 09/02/2014 18:58

tanny I hope your suspicions are unfounded. I was told I couldn't have NK cells tested on NHS and paid £350 to see Prof Q, but the meds were all prescribed on the NHS (pred, progesterone, clexane)
AFAIK you can't get IVIG or intralipids on the NHS but I wasn't prescribed them.

MrsPixieMoo · 09/02/2014 19:44

Tanny I'm sorry to hear what you're going through. Everyone seems to have different experiences. I was referred to Mr S after my third miscarriage last year, saw him at St Helier on the NHS and had NK levels measured there. I live in St H catchment area and my DD was born there and thought this was why I was referred to see him and that it was luck. However, his nurse told me patients come from all over the country to see him at St H on the NHS. I had to wait 5 weeks to see him and was pregnant before my follow up appt two months later.

Tumtimes1 · 09/02/2014 20:06

Hi tanny sorry to hear you are feeling worried - symptoms dropping doesn't necessarily mean an MC as I found last week but saying that, I totally understand how you feel and I hope that your worries are unfounded. When is your scan booked again? My symptoms have been up and down continuously. Its driving me nuts.

RE: Mr Shehata, I went to him privately at Harley Street after my first 2 MC's. I paid approx 1k to get tested for everything including blood issues and nk cells. I went onto MC again after that appointment (very early) and am now on 4th pregnancy and have got furthest along I have ever been. Still not out of the woods yet though.
I understand that Dr Quenby does the NKC tests in the midlands for a third of the price of Shehata. Obviously if you can get referred on the nhs that would be very cool but I think she is very reasonable and thorough according to Baking. x

tannyLoo · 09/02/2014 22:00

Thanks for all your advice. I am feeling a little bit calmer.

Im off for a morning visit to EPAC to see if I can get a scan and clexane proscribed if it's viable. Otherwise I think I'll be getting in touch with Prof Q. After I've curled up in a ball and moaned "why me?" for a couple of weeks...

MrsPixieMoo · 10/02/2014 06:24

Good luck Tanny at the EPAC this morning.

bakingtins · 10/02/2014 06:50

Good luck tanny

Tumtimes1 · 10/02/2014 12:56

hi tanny hope all is ok.

Mel3062 · 10/02/2014 18:48

In my thoughts tanny

Tumtimes1 · 10/02/2014 19:56

HI there
Quick question on Mr SHehata's regime. It says on my treatment plan to stop/ween off pred at 12 weeks. Does anyone know if that means, ween off by 12 weeks or ween off AT 12 weeks (so i would finish totally around 14 weeks)? Thanks all for any advice.

freelancegirl · 10/02/2014 20:06

Are you on 25 or 40mg Tum? As far as I recall its starting tapering as early as 9 weeks on 40 and 12 on 25 and I think that gets you to the same Pred - free point. Check though just in case I'm wrong. I found it mentally challenging to come off it and did a few more days when I had gone down to 25! But it was all good.

brownstag · 10/02/2014 20:07

I think the latter from memory. I seem to remember thinking I was nearly there, and then the goal posts had been moved even further away!

Tumtimes1 · 10/02/2014 20:09

25mg Freex OK I Will taper off from 12 weeks and double check with Louise. Thanks guys x

Original poster
teamdozie · 11/02/2014 13:29

Hi Tum I asked him the other week about that and he said 12 weeks to start tapering off!

Village how are you? Not long now!? X

OP posts:
MrsPixieMoo · 12/02/2014 04:54

Good morning ladies. Quick question: I've been tapering prednisolone and am now down to 5mg but am still waking early. It's at 4am rather than 3am but I was hoping this would stop. Does anyone have experience of the early waking lingering and any advice on what I can expect? Thanks so much.

Sickness gone, hurrah!