TTC or pregnancy on prednisolone or similar part 13

[VillageMum]

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 tanny welcome to the thread!

tum 24 weeks, so exciting isnt it? I love feeling baby Team move! Have you had movement yet?
My 24 weeks scan was booked when I saw the consultant at 15 weeks! I have them booked for 28, 32, and 36.

shamrock so sorry to hear your sad news! Hope Wednesday comes and goes quickly for you!

Waves to everyone

Xx

Hello ladies

I am de-lurking too. Congratulations to everyone in their 2nd/3rd trimester. Your success stories really give me hope.

I had my first appointment with Mr. S. it was interesting . He suggested super ovulation and I am not so sure whether I want to go for that. Can someone tell me what are the costs? Also do you know the difference between letrozole and clomid and why he prefers the former?

He said my NK cells are very high indeed and has asked me to get some more tests done: one which if positive would require humira. I think if it turns out I need humira, I may just refuse it. Not quite sure if Mr S would be amenable to that.

Also another question. He recommended 75mg aspirin every day, not just post ovulation. Maybe I misunderstood. Since I don't have any sticky blood etc conditions not sure why I need to take aspirin. Has everyone with success stories been on aspirin?

I think there is mixed view now on aspirin. St Mary's suggested to me that it can actually increase the risk of mc if there are no known blood conditions.

Also another question. He recommended 75mg aspirin every day, not just post ovulation. Maybe I misunderstood. Since I don't have any sticky blood etc conditions not sure why I need to take aspirin. Has everyone with success stories been on aspirin?

I think there is mixed view now on aspirin. St Mary's suggested to me that it can actually increase the risk of mc if there are no known blood conditions.

Hi triple! Welcome to the thread. I can't answer any questions personally about super ovulation but a couple of friends of mine have now had babies on it. Yes Mr S' protocol includes low dose aspirin all the time, I have some of the highest levels of cells he often sees and was on it from ttc to 25 weeks pregnant when I had my little boy on the treatment. There's a large body of research to say it can help but I think they sometimes take people off it if they have started to bleed (not in relation to it, just it makes blood thinner so could presumably worsen it) and they have no known clotting issues. Although disclaimer says I'm not a doctor of course :) I've mainly read positives about taking low dose aspirin with no huge negatives.

Thanks for the welcome, it's great to meet you all, and wow Triple

Hi tanny good luck! Not long to go before you see Prof Q. Hopefully you will get some answers soon. He recommends super ovulation for those who also have a problem in getting pg. That of course is not an issue for you!

freelance thanks for the info on aspirin. I am in two minds, but will decide as I go along. I have scoured the threads and there are many of his patients who have not been successful and been popping steroids month after month. I also read some cases where stopping the steroids actually led to a BFP. It's all very confusing - there are success stories like yours but there are an equal number, if not more who have not been successful on his protocol.

At the moment I feel like it will not work for us. I feel once I start on tx I will keep getting pulled in to try alternative meds and treatments. Probably just one of those moments!

Hey triple, yes other dr say aspirin before pregnancy can hamper implantation if you have no known issues. I had 3 mc before dr s and 3 after him and was then struggling to conceive at all. I did stop steroids for almost a year before this pregnancy.. Where I did take a low, low dose from about 5 and a half to 6 wks. Personally I don't feel it was a clincher for me, but I took some anyway as I had them. I did also try about 9 super ovulation cycles during that period, but it didn't happen for me. I think it is so tough to know what to do and personally I'd like a more tailored approach. I know dr ndwuke at zita west prefers intrallipids (at less than half price of dr s) every 3 mths rather than steroids and prof Q steroids once pregnant and they seem equally as "successful" as anyone else. If you are lucky and fall pregnant within 3 cycles or so with dr s snd dont mc I think you get away with it. If you don't then that's when a lot of us ran into the treatment causing other issues.... You sound like you know your stuff and have researched well so am sure you will find answers. Best of luck.

Hi Duggs

Thanks for an alternative view. It is helpful to know that sometimes it's just about catching the right egg rather than any treatment.

That is interesting about Mr N. I feel I have knocked on so many doors already that I don't want to try anyone new. We have spent far too much.

I have my follow up with test results in 2 weeks time and I will make up my mind then.

How far along are you duggs. Good luck for the rest of your pregnancy.

I should have said dr N does intrallipids during TTC but steroids once pregnant but I think most of us can handle 12 wks of steroids.. When it gets to 2 yrs then it is a different story. I will follow this topic for the rest of my life in the hope there will be some definitive answers one way or another over the next 50 yrs (given myself another half a century there) as I am sure we all will. I'm 18 wks on Thursday. Funny thing is with this pregnancy my seventh I had actually stopped actively trying after a failed nhs IVF in December and found out I was pg again but was so fed up of it ruining our lives we went on our planned ski trip, I had a few beers and some wine and French cheese and ignored it. It seemed to get me to 6 weeks or so.. And I reluctantly downed a few pred tablets but tbh by time I had early scan a week later we had an embryo right size and right fetal heart rate which we hadn't had before so I do think it was just a good egg this time. Best of luck to you x

Hi everyone - just catching up, you had disappeared off my 'threads I'm on'.
to tanny and triple

Prof Q isn't a fan of aspirin and in fact took me off it when local RMC consultant had advised it. I think all the different doctors claim pretty similar success rates despite their different protocols. duggs is quite right that in 50 yrs (maybe even 10) I'm sure it will be much clearer what is working but none of us have that time so there's a bit of a leap of faith involved.

duggs your experience is very interesting. As you conceived and managed get past 12 wks basically without pred. I wonder what Mr S would say about that? I agree taking for 12 wks is not an issue. It is more the month after month of pred when you have even conceived the bothers me. If I were in an IVF cycle then I would probably take it straight from embryo transfer but it doesn't sit quite right on a natural cycle. My only worry is that all my losses have been very early without even seeing a hb. So there is the risk that pred from bfp may not be as helpful.

Has anyone taken any supplements for NK cell activity?

bakings you are still hanging out here!! It must be any day now right ?

Well I did take 20mg but not until about almost 6 wks... All my losses bar two ( both confirmed chromosonal) there was no heartbeat either so I couldn't test those 4 so they were pretty early losses usually no FHB at 6 wk scan...

Morning everyone

Lovely to read all the pregnancy updates - please keep them coming as they are so inspiring and remind me that all the effort of ttc is not in vain.

Shamrock so sorry to read your posts. On this thread there is a masters degree worth of knowledge and experience not to mention support. I have found it invaluable in my darkest points of this VERY long journey.

Triple I'm with Mr S and following his SO programme. I had a BFP on my first attempt at SO which unfortunately ended with a mc at 8 weeks but it was the furthest I had ever been. Although you do feel like a walking medicine cabinet, and sometimes Mr S's bedside manner is not the best, I have faith in him and his programme and my DH and I are sticking with him. The only change we are making is that instead of Intralipids we are going to try IVIG as the cause of the last mc seems to have been the meds. We are going with the 'throw the kitchen sink at it' method

Had to sit this cycle out as my lovely Grandma (who I was really close to) passed away in Israel and we had to make a last minute dash over there. Naturally it all timed with my cycle starting and I simply couldn't face scans and ttc whilst dealing with the loss of my Grandma. Arrived back to the UK on Monday and am now trying to resume normal life. Although out of my hands, I can't help but feel upset that I never managed to make her a Great Grandmother (something she desperately wanted) and having also lost my mum 6.5 years ago, my future children will never get to meet the most amazing women in my family. Not a lot I can do about it but it does make me sad.

Sorry to end on a bum note - obviously needed to off load. Waves to everyone and I hope we all have a lovely stress free day xx

Sorry about your grandmother passing Luna! Hope things settle soon... What did u mean when u said medication caused last mc? A few women have had IVIG and humira with success! I don't know much about it but I know dr gorgy and others abroad have been using these things successfully for a while now. Think dr s recently started to add it in where he felt necessary but I am sure it is linked to the more extensive Chicago testing where they look more closely at the immune issues. More money of course but wasn't my issue after getting checked by dr gorgy a few yrs ago! I hope the IVIG works luna

Hi Duggs - sorry don't think I worded my post well re meds. We managed to get the foetus genetically tested and there were no abnormalities found so Mr S said we had to assume that my med protocol needed changing. As I'm high/complex NK Cells I am already on the highest doses of Pred / hydroxy etc so the only other 'tweak' he could suggest was trying IVIG instead of the intralipids.

I was slightly nervous about IVIG but Team has been brilliant at sharing her experience and now all I'm waiting for is another BFP so i can get started.

Hi Luna

Indeed everyone has such varied experience. I am sorry to hear of you miscarriage. How many SO cycles have you been on so far since the mc. It's interesting that you made it to 8 weeks which you hadn't before. So clearly the pred did help, but as you say perhaps you need something stronger.

I got my TEG test results back from St Mary's and will be on heparin/clexane as well now up till 24 weeks once I have bfp. Does Mr S also prescribe this from ovulation?

Hi Triple

Not sure how to count my SO cycles as I'm not sure if the number gets 'reset' if you have a BFP. Since the mc in Jan, I have had two more SO cycles. At my last appointment, Mr S said he wanted me to up the Letrazole to 7.5mg instead of the 5mg I have been on so far.

I also have to take Clexane but from BFP and not ovulation. It's not pleasant to start with but once I mastered the technique for injecting and holding an ice pack on it for 20 mins afterwards, it was A LOT easier.

For me the whole SO and med/vitamin taking was so complicated to remember and I felt completely out of my depth. The ladies on this thread were brilliant and really helped to guide me and I now feel like a pro. Just waiting for that next BFP and I know exactly what and when to do things. I don't think any of us will ever get of over the constant fear and worry of a mc, but I know what to do to give myself and my future babies the best chance which is all I can ask for.

Good luck with everything xx

So, my appointment with Prof Q is booked for next Friday. Gulp.

What should I prepare? Did other people take notes with them with details of MCs and results of investigations?

Is there anything I should ask about?

Just popping in briefly to say hallo and with an interesting bit of research about luteal phase defect, for anyone who suffers with that.
I used to, but recently it had improved. Now I think I know why, because of l-arginine. Since I stopped taking all my supplements, my luteal phase defect has returned.
www.ovarianresearch.com/content/2/1/1
Basically it's saying luteal phase defect is due to lack of blood flow to the corpus luteum, which can be improved by l-arginine or vitamin E.

Hi Tanny I saw Prof Q before Mr S and she's lovely. It's a good idea to take as much info as you have such as dates of mc and how far along you were with each one. Any meds or supplements you're on and any treatments and/or tests that you have undergone.

The procedure itself is fine. Just like a smear with a tiny bit of period cramp for a minute or so. It really does sound worse than it is. Keep us all posted xx

Brown lovely to see you back and the research really does make for interesting reading. Am so glad I'm taking L'Arginine and it was on this threads advice that I started

Luna thanks, that is really useful. I'll write some notes and try not to obsess between now and then!

Brown really interesting reading.

Baby Faith arrived this am , 2 weeks early
, weighing 5lb3oz. Both fine, staying in to monitor blood sugars for 24 hrs then hopefully home tomorrow.

Congratulations Baking! Well done! xx

That's fantastic news Baking - HUGE congratulations and welcome to baby Faith (I love the name and so very apt)