TTC or pregnancy on prednisolone or similar part 12

[teamdozie]

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!

Hi Baking tins
Just wondered what regime you're on from Prof Quenby? I'm on 25mg pred, 75mg aspirin, folic acid, 25mg thyroxine and Vit D even though my killer cells test was normal. All under Dr S.

Hi everyone
I've been catching up with all the talk about Dr S and his choice of treatments etc .. I don't think we will ever know how he can give one patient one thing and another patient who's similar another!! After being diagnosed with VHNKC he put me on 40mg pred, hydroxy, etc etc... But there was no question about the hydroxy!!! Do I find that strange that he never offered it to others!! I have had one mc on his protocol and now we have swapped intralipids with IVIG and 40 to 25mg pred!

Luna it's so good to see you back! Sorry to hear the results came back clear! We always want an answer!! If it's any consolation mine came back clear after our first go and now with the IVIG I'm further than I have been in a long long time! Try not to second guess what he might say to you! We did that! And it can drive you crazy!! But I'm sure you already know that!!

When we saw dr s a few weeks ago we spoke about another round of IVIG and we said that this baby may have stuck around anyway but we aren't taking the risk do we are having it till 20 weeks!!
12 week scan today and I'm petrified!! Hence the early post!!

Waves to everyone
Xx

Forgot something important that DH reminds we all the time!! We ( all of us) are paying Dr S a hell of a lot of money so we should be getting what we want!!! If it wasn't for our misfortune he wouldn't be around and I'm thankful that he is BUT if it wasn't for us HE wouldn't be in business! And as far as I'm concerned if he refused me any treatment .... Well now I know there are other clinics who do the same too!!!

Xxx

team good luck! Everything crossed for more good news today.

jv I was on 20 mg pred from BFP to 10 weeks then weaning off between 10 and 12 weeks, progesterone pessaries twice a day from CD21 to 12 weeks (plan was to stop if BFN at 28 days and try this for up to 3 cycles) 20mg clexane from a 5 week scan if pregnancy was intrauterine, and 5mg of folic acid. I had NK cells of 16% on a biopsy.

Hello all.

Team thinking of you for your twelve-week scan!

Luna lovely to see you back on the thread.

Mrs P hope you are feeling better...

Just a quick question for Abney: do you mind me asking how old you were when you had Baby Lewis? Think you mentioned your mcs were all between age 40 and 44? I'm really heartened by the fact that Mr S doesn't seem to think that age is necessarily an impediment (depending on one's personal history, how easily you fall pregnant etc) as I'm 44!

Congratulations Buster on the birth of your DD and thanks for sharing your story. I am feeling more and more hopeful as I read yours and other's success stories.

Team your DH is correct and it is something I think we must all remember with Mr S. I do think sometimes he gets caught up in the success levels and stats and forgets that we are people going through emotional and traumatic events.

I asked him about IVIG when he told us about the mc last month, and he said no. Considering my initial blood tests showed a significant reduction of NK Cells with IVIG, I do wonder what his thinking is behind this decision. I shall definitely be asking again on the 12th.

Good luck with the scan please let us all know how it goes xx

MrsP how are you feeling?

Abney to answer your question, I have had 8 mc so far (with 2 D&Cs). No 1 -6 were with the NHS trying aspirin and then cyclogest and finally an HCG combo all of which didn't work. MC no 7 was on Prof Quenbys protocol which may have worked if we had tried again but I heard about Mr S and changed to him instead. MC no 8 was last month and the first with Mr S. Im 36 (37 this year) and appreciate that age wise I have plenty of time to keep trying, however my biggest fear is to end up with no child/family at all. At some point we will have to draw the line if only to give us enough time to pursue other avenues such as adoption, which in itself takes a long time. I also dont like how the medication affects me insomnia, weight gain, problems with my eyes and the absolute fear when I fall pregnant that I am miscarrying every minute. It was like living on a knife edge (as many on here will know well) and having had this for 6 years I wonder at what point do my DH and I say enough is enough? On the flip side there is so much positivity on this thread lately that I think just one more go

Luna do t give up with regards the IVIG! It sounds like our NK cells are very similar as mine responded fantastically with the IVIG and not so much with everything else! I do believe the reason I'm here oday is the IVIG!!

Baking and Village all went well with scan today! Got my official due date! And baby is measuring 5 days ahead!! DH is convinced he saw a pair of testicles at one point when baby was bottom up!! But I think he has spent to long on google!! Lol!!

I start tapering off as of tomorrow!! Can't wait! And back to newlife tomorrow for my IVIG!

I just want to thank all of you! You have been an mazi g support during these first few weeks! And I can't wait to share my news with you when babyTeam arrives!!

Xxx

Team that is FABULOUS news and I am so happy for you.

I am definitely going to be demanding requesting forcefully that we go for IVIG. I know that it is very expensive but what is the point of a baby fund saving pot if we haven't got the baby?

Thank you Luna

Absolutely! Louise was telling me that they had a lady who had IVIG and had a baby and subsequently had another two again with IVIG!

You go for it! If you are happy paying for it I don't see what his problem his!! So strange how he offered it to us and not you and we are exactly the same!!

Xx

Maybe now that we have had our genetic results back and they show no abnormalities with the foetus he'll be more inclined to go the IVIG route? Can't think what other changes he could make otherwise as I am on the high level dose of Pred and am already on hydroxy. Will keep you posted either way - roll on the 12th .

Congratulations team glad it was all good.

Team that is FANTASTIC news! So pleased for you xx

Team great news on the tapering. I know you will feel so much better off steroids. Such a milestone, well done.

Luna I am sorry that you didn't have any more conclusive news. Good on you for being positive and giving it another go with Mr S. Roll on 12th

I'm not feeling at all well and also wanted to canvass opinions. As I said unthread I have developed pneumonia. The theory is that I picked up a bug from DD who has one after another from nursery and that because I was on steroids it has got worse. I am also asthmatic, usually barely worth a mention and I can go for months/ years without any asthma symptoms or meds. However since tapering pred my asthma has come back and I now cannot walk very far without breathing problems.

I am feeling bad about the amount of time I have had off work and am under some pressure to go back on Monday. My DH has been away for the past month on a course (he is back tonight) and I haven't had anyone to really talk this through with.

My dilemma is whether to continue aspirin. Aspirin can make asthma worse. The GP I saw didn't know what to do, so called the obstetric department. Their advice was that treating my lungs took priority, and if that meant stopping aspirin, I should stop. I called Mr Shehahta's midwife - during which I still took aspirin- saying Mr S has said if I want to stop, no problem. The thing is, I just don't know what difference it will make to the pregnancy and don't want to risk things now (17 weeks).

To complicate it further, when I had my bloods done, the phlebotomist made a mistake and put the clotting bloods in the wrong tube and when I went back for results I was already pregnant, so we don't know if I have clotting problems or not.

Sorry for long post, but WWYD?

mrspixie this sounds like a real mare actually. Do you know why tapering off the steroids would've meant you more susceptible to the chest infection? I would have thought that when you were on the steroids that is when your body is less able to fight off bugs etc. When you come off the steroids is when your body is more able to fight?
Re the aspirin I thought the general consensus under mr s was to come off aspirin at 14 weeks. Had he said originally to you that you should take it for the duration? When I last saw mr Shehata he told me specifically that I personally should carry on taking the aspirin for the duration of the pregnancy but this was specifically for my migraine with aura which I am signed off work for currently. Otherwise I would have had to come off.
Would they consider giving you clexane like 20mg if you came off the aspirin? As a precaution at all? Personally if you are having difficultys breathing and aspirin is exacerbating this then you should consider coming off it. Especially if mr s says its ok. Your health is number 1 here. I'm sorry you are going through this!
What antibiotics area you on for th pneumonia, amoxicillin? Or perhaps could you it to see if once you don't have the pneumonia if your breathing improves?

Mrs P, Mr S's protocol is to stop aspirin at 20 weeks 'unless advised otherwise'. At 17 weeks you are very close to that. If it were me I'd phone him or Louise and ask that question about the clotting mix-up directly. I know that the thrombophilia tests are usually done when one is not pregnant, though I've had them done both when not pregnant and when pregnant before, and no one seemed to think it an issue (my results were negative both times). Best of luck, it will be ok!

team that is the most wonderful news ever!! I'm absolutely thrilled for you.

Luna definitely worth pursuing the IVIG question with Mr S, if your initial blood tests showed that your cells reacted well. I found that he was open to being actively asked about meds (he didn't think I needed hydroxy as my NK cells are only just in the high bracket, but I explained that I just don't have the biological time to fine-tune things 'next time', and he totally accepted that and prescribed it for me.) I would tell him exactly what you wrote so eloquently above about the physical and psychological effects of your mcs, the terror, the fact that in spite of your young age you actually don't feel you have years to pursue this as adoption would be your other option and that takes time. And remind him that your cells responded to IVIG in tests. Just give him the whole picture. Thinking of you x

Thanks Tum and Village. Appreciate your ideas. I'm under Mr S on NHS so no Louise and it takes a few days to a week for the midwife to speak to him and get back to me. I've never actually met Mr S, only his registrar once and his midwife since.

When the blood mix up happened, he passed on a message saying there was no point doing clotting tests as I was already pregnant. His NHS protocol sheet says aspirin to 40weeks but the midwife had mentioned 20 weeks.

I'm on erthromycin as I have a serious penicillin allergy. Took it once and ended up in ITU.

I think on balance I will stop aspirin. Just wanted to make sure I'm doing the right thing. It's scary as after having fortnightly scans I'm now not seeing the midwife for 8 weeks which feels like ages.

Thanks for hand holding and good sense.

Mrs P, I wonder if you could ask your community midwife to listen to baby's heartbeat weekly, just to keep the anxiety at bay? It can be so difficult to get to see a hospital midwife, as you say. When I was pregnant with DD and almost insane with worry my lovely local m/w did a weekly Doppler for me, and it kept me going - just knowing that I would have that weekly dose of reassurance.

Village I actually saw the community midwife yesterday and although I didn't ask for weekly asked if I could see her more often as next check is at 24 weeks. She told me not to worry and also advised me not to get a Doppler and when I heard the heartbeat said 'that will have to keep you going until your 20 week scan.' She also said the weeks would 'fly by' so I felt a bit silly. I think they're really stretched here.

MrsP .. delurking here briefly, but you know, you could always get a private scan partway through your wait if you wanted to? Just a thought :)

Village I was 45.5 when I had Baby Lewis. If you can get pg easy I don't believe your fertility levels will be checked. Dr S never mentioned age as an issue. Luna just look at team dozie. I think village is right it is all about the fine tuning. If tha majority of mc's occurred on his full treatment plan then it would be a different story. He hasn't thrown everything at it yet. Keep going. I am sure that the majority of people on this thread get their in the end. Team congratulations on yr scan. So thrilled for you.

De lurking as an old timer here. I've no children yet and have been trying for almost 5 years. 3 mc between 2010 & 2011 then saw dr S and got diagnosed with high NKCells. Have had a further 3 mc on the treatment programme in 2012 & 2013. Am now currently very early at 6wks pg with my 7th pregnancy hoping this might be the one??!! There are lots of successes but so far but it doesn't always seem as straightforward as take the steroids, hydroxy and intrallipids and all will be fine unfortunately. Time will tell I guess... I have a scan booked with dr S on 13 march if I get that far will be 7+5!

duggs I am delighted to see you back with a BFP. Crossing everything that this is the one that works out for you.

MrsP somehow missed that you were so poorly. Get well soon. Hope you can get some advice from the horses mouth about the aspirin. Asking about clexane as an alternative if you are worried about the clotting sounds like a good idea. I found the 16-20 week gap hard and did wonder about a private scan but resisted in the end. You should soon start to feel movements which is reassurance that all is ok.

duggs brilliant news, so pleased for you! This was a natural bfp wasn't it?? Everything is crossed for you.

duggs delurking to whisper congratulations to you. Really hoping this is the one for you. I've got everything crossed!

Thanks guys! Yes was natural but I never really get past 7 wks (only twice) so I am not holding out much hope. Have told no one except DH and trying to ignore.