TTC or pregnancy on prednisolone or similar part 10

(1000 Posts)
roseandroli Thu 14-Feb-13 10:17:57

We are now on part 10 of this thread! I hope you can all find this. 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!

Links to earlier threads:

Part 9: http://www.mumsnet.com/Talk/conception/a1552980-TTC-or-pregnancy-on-prednisolone-or-similar-part-9

Part 8: www.mumsnet.com/Talk/conception/a1492407-TTC-Pregnancy-on-Prednisolone-or-similar-part-8#33842381

Part 7 www.mumsnet.com/Talk/conception/1452035-TTC-Pregnancy-on-Prednisolone-or-similar-part-7

Part 6 www.mumsnet.com/Talk/conception/1419032-TTC-Pregnancy-on-Prednisolone-or-similar-part-6

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

mollieboo Mon 29-Apr-13 17:23:44

Hi all, hope everyone is well and you all had good weekends.

Good to hear from you kittens.

Thanks for the info free. I thought it was a new thing tapering off at 9 weeks but it seems that its always been that way for the vhnkc plan. I shouldn't think too far ahead anyway, got to get to a successful 6 week scan first, v scary stuff.

buzzybee123 Fri 03-May-13 22:02:13

hello ladies I hope you don't mind me coming on here, I am on Shehatas nk cell treatment,I have been on the hydroxy for about a year, I haven't been taking the pred as it didn't agree me, I now need to take it so my question is do you take the pred in the morning or the evening, thank you

freelancegirl Fri 03-May-13 22:06:32

Hey buzzybee! Welcome to the thread. How's it all going with you? Definitely take Pred in the morning as it can make some people wakeful at night.

Mollie hope you're ok? When is the scan. Will be thinking of you. Let us know how it goes. Quiet on here, everyone ok?

buzzybee123 Fri 03-May-13 22:22:10

thank you freelance it has been so long since I last took it, I just couldn't remember, I am going for IVF so thought I should take the pred from EC and give it the best chance possible

freelancegirl Fri 03-May-13 22:27:57

Indeed. Well, there are a few negative side effects but nothing too hideous and relatively short lived. Good luck!! Let us know how you get on.

buzzybee123 Fri 03-May-13 22:57:41

thank you smile

mollieboo Sat 04-May-13 12:50:27

Hi everyone, hope you're all well.

Welcome buzzybee, hope all goes well with your treatment. Yes def take pred as early as possible, it does keep me awake but its manageable.

I had my 6 week scan at new life today, baby had a strong healthy heartbeat and measured exactly right for days. Good start! Feel so relieved but I know its such early days so I'll still worry.

freelancegirl Sat 04-May-13 19:44:49

Mollie that's amazing! Great news! You must have been terrified and so relieved too. It's early days as you say but a great start.

mollieboo Sun 05-May-13 05:36:51

Hi free, I'm wide awake at 5.30am on the pred as usual! Thank you very much, yes it is amazing news. My dh is sooo excited but I'm being so cautious this time. Hope you're good and lo is doing good too.

Waves to all, hope you're all enjoying the bank holiday weekend x

Clabbage Mon 06-May-13 17:16:55

mollie what great news. Really reallly pleased for you.
Just thinking that abney must be next. How long now. You, along with kittens are great success stories for those of us who have been going for a while.
I am now close to 3 years of trying for just one more, with 8mcs along the journey Six since my ds was born and 2 of them on treatment. I have added high dose folic acid to my list and really hope to be pregnant again soon. I do have moments of questioning my sanity but I can't bring myself to give up, although the logical part of me says that would be the best decision.
Hope everyone is ok and the new mums are cherishing every moment x

mollieboo Tue 07-May-13 06:24:05

Hi clabbage, thanks. I really hope you're pregnant again soon and that it works out. Similarly I've been trying for three years too now, the craziness all started when I got pregnant on honeymoon, here I am seven miscarriages later and I had and lost Oscar in the middle of them all. I too have had two mcs on treatment but am hoping it was just bad luck as I stopped the pred with first one as didn't realise I was pregnant and the second one was a blighted ovum. Each time I feel like giving up but then I recover slightly and realise that I just can't give up yet. I totally understand why you are keeping going, logic just doesn't come into it does it?! Here's to hoping the treatment works third time lucky for us both. Yes it is inspiring to see other ladies getting their babies after fighting through so much, it gives me a lot of hope.

abney keep us posted!

roseandroli Tue 07-May-13 08:52:38

mollie that is such wonderful news, I'm so thrilled for you. Dr. Shehata says that 9 weeks is usually when he feels the pregnancy is on it's way, so only three more weeks to go! I'll be waiting to hear your news.

mollieboo Tue 07-May-13 09:54:26

Thank you rose, v kind. How are you doing, feeling ok?

Mel3062 Tue 07-May-13 10:46:34

Hi ladies help required please. Started mr s plan a year ago after 4th miscarriage and discovered I have high nk cells, been on superovulation and humira for high tnf alpha. I have just lost my bean after seeing heartbeat thurs and being past my usual loss date so thought treatment and intralipids were working. Went to mr s for scan he couldn't find fetus, it was my birthday I was thinking all sorts! Had scan today fetus but no heartbeat. I can have op tomorrow at hospital and obviously want it testing or I can go to mr s. have any of you had erpc with him? Does he do anymore tests than the hospital to warrant the travelling and cost?? Any experiences? Obviously I want to try again whilst humira is in system but I also need to know why this failed sad x

freelancegirl Tue 07-May-13 12:55:32

So sorry to hear that Mel sad so sad to have another loss. I too had a loss on the treatment but mr s was away and I went to my local hospital. I think others here have been to him for an ERPC and will hopefully be along soon to advise xx

Mel3062 Tue 07-May-13 13:05:48

Thanks for replying and sorry for your loss too. It's hard to understand as I really thought treatment was my answer and the hospital were giving me hcg and heperin too. Did you get any answers? Are you trying again?

freelancegirl Tue 07-May-13 13:17:07

That was in august 2011 and I was pregnant again two months later which resulted in my now almost 10 month old little boy. So a good outcome eventually! No answers though no. Perhaps 'just one of those things' you never know. I did ask the hospital to test but they didn't. After that mr s also added in hydroxychloroquine. Are you on that too?

Mel3062 Tue 07-May-13 13:32:54

I haven't been but maybe hel add that to the mix, what does that do? Pleased you had a good outcome. I had an erpc that showed nothing and I've had the Greek hidden tests too and just had antibiotics so had hoped it was all systems go this time. It's taken a year to concieve this time and was 18 months before that but maybe the humira will still help x

buzzybee123 Tue 07-May-13 16:57:33

mel so sorry sad

thank you for the welcomes, it very nice over here in Brno and the clinic is lovely, I like the way they are not pushing me to take lots of stuff or to have treatments that aren't really needed, my donor has produced 10 eggs and 7 were mature and have fertilised. hopefully ET will be on Saturday.

free can iask did you have intralipds with your pregnancy as well, I had one lot here as it is way cheaper only 100 euros, I was thinking about having it at nlc if this is results in a bfp, shehata said I could but was sure if he reallt thought I needed it, i'm on the hydroxy too, thanks again for all your help

mollieboo Tue 07-May-13 17:17:54

Hi mel, so sorry for all that you're going through at the moment. I had a blighted ovum on treatment a couple of months ago. Mr S recommended having an erpc with him, or otherwise at my local hospital. But I decided to do medical management at home as I just wanted it over with in the best possible way for me, and I thought the odds were that it was due to a chromosomal abnormality rather than an immunology problem. Sorry I can't be more help, big hugs at a horrible time.

Arianrhod Wed 08-May-13 09:41:15

mel Speaking to you on the other thread, but so very sorry for your loss and best of luck for today xx.

buzzy If your clinic will give you a prescription for ILs, you can take it to Independent Nursing Services (I have the contact details if you want them) which are just off Harley St and they will fill the prescription for I think it's something like £20 and administer it for you for £75. NLC charge £350 for ILs, so you can see that's a huge saving! I'm going to INS day after tomorrow for my first pre-ET ILs; in my case, Serum actually gave me the bag of ILs before I left Athens (charged something like €18 for it) along with the necessary tubing, so I will just take that along to INS for them to administer for me. The next lot I'll think I'll be having at Serum (also €100 like at your clinic) when I go over for ET I think a week Saturday(ish) and then probably ones after they'll give me a prescription and I'll get done at INS. Are your clinic prescribing you immunes meds as well, or are you just following Mr S's IVF immune protocol? Just wondered that you're still taking the hydroxy, so presume you're following Mr S's protocol?

/waves to everyone

lemonsherbet Wed 08-May-13 09:55:53

Mel just wanted to say am thinking of you today. Hope it gives you some answers.

I will wave to everyone else. Got to get on with homework.

buzzybee123 Wed 08-May-13 15:11:59

[smi ari thanks, yes I know some women who have bought back intrlipids from here, I do work with some nurses but not sure how keen they would be to administer so the place near harley street might be a goer. I can't believe how cheap things are here compared to the uk, I doubt my nk cells have changed much so will stick with the hydroxy and pred, they think i'm on a high dose of pred already so don't feel I need medrol which is good, I like the fact they are not trying to flog me everything, when do you fly out serum

Arianrhod Wed 08-May-13 15:45:19

Well shout if you want the details buzzy. I'm not sure exactly when I fly out, I should find out in the next couple of days or so I think.

I'm a bit nervous as I'm only on a low dose of pred now (under Mr S I was on 40mg from BFP) and no hydroxy, because I'm also now on neupogen/G-CSF, which works on your white blood cells. Praying it does the trick, but very glad not to be on a high dose of pred with all its lovely side effects, I have to say smile Btw girls, I found out recently that one way to avoid bloating/puffy face when taking pred is that you should avoid salt, sugar and refined carbs (so, white rice, bread, etc). Just thought it might be of interest.

Mel3062 Wed 08-May-13 17:10:30

Thanks ladies just been discharged as I was 2 hours in recovery as blood pressure went very low and I was shaking. Hopefully get some answers in 6 weeks. Got a sick note for next week too which I may just take advantage of x

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