TTC or pregnancy on prednisolone or similar part 11

[Buzzybee123]

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!

Also backed the film .. it's so close to the target, hopefully the last amount will come in very soon now. This is SO a film that needs to be made, and seen!

Hi all - good phone appt with the ever positive Prof Q. My uterine NK cells are 16% (normal 20% then she'd be less hopeful that the medication would work.
Protocol is progesterone from day 21 of cycle, test on day 28, if positive continue the progesterone and start prednisolone. Early scan to check pregnancy is in the uterus then start clexane (heparin injections) as they are cytoprotective for the placenta (nothing to do with clotting disorders which I don't have). All those treatments for the first 12 weeks, then if successful monitoring for faltering growth at 28 and 34 weeks.
We're prepared to give it another shot so I guess we are officially TTC again from this cycle.

Good news baking - am I right in thinking prof Q prescribes 10mg pred from positive pregnancy test?

20mg. How does that compare to doses others are taking?

20mg is pretty standard dr s prescribes 25mg but he doesn't use clexane as much as others and dr ndwuke is 10mg I think? Sounds like you have best bet because taking pred month after month when you don't get pregnant has disastrous effects on some (me) and I totally regret it, so yes prof q and others sounds like a better plan to me. Best of luck x

25mg for me too and up to 40mg upon BFP as 'very high' protocol.

Quickie - I've been asked to write this (recurrent miscarriage) up for a broadsheet. Anything you would particularly like to see in the feature?

freelance How frustrating and upsetting it is to be told by the medical profession that you are just unlucky. My experience was that MC 1 was "unlucky" 2 is "very unlucky" 3 is "extremely unlucky" and then 4 is "we don't know what is wrong and we can't help you".
It's an area where there is still so much that is not understood and more research is needed.

And the appalling treatment meted out by unsympathetic /untrained NHS staff in eg giving out the news you've had a mmc in at best a clinical manner, leaving you in corridors to wait to see a doctor with people walking past staring while you're sobbing your heart out. I could go on but I'm sure you're aware of some suitable examples. Basically staff shouldn't be allowed to work in an EPU without training on the emotional impact of mc on the woman and her oh. Time may be short but it doesn't take long to engage brain and behave in a vaguely human way.

Also, the fact that one of the worst things about mc and rmc is no one talks about it. How many of us only appreciated how common it is and that we all go through the same perfectly normal experiences and feelings until we found this thread/community? When I first found it two years ago it was like reading my own thoughts.

Agree with choccy totally! I have to say the fact that the specialists in this country especially seem to fragmented and focused on their own area - immunology, (dr s), blood clotting (st Mary's) and don't seem to have a joined up view means that you have to take a gamble on which area might be your issue. Or a number. There are some consultants that seem to be taking a holistic view but these tend to be few and far between. Male issues are under investigated in any detail ( not good enough just having basic sperm NHS test when there are DNA fragmentation tests available now). Hope that helps.

One analogy I have heard is that of the seed and soil and however much you fix the soil a bad seed will not grow and vice versa. Hormonal balancing is essential and I think taking some time to get that right before rushing into ART is important. Sometimes western medicine can't fix the hormone imbalanced required but they are usually quite simple fixes with herbs, diet and lifestyle changes.

Duggs can you PM me your email address please? And anyone else who would be up for being quoted :)

Free congrats on getting all your funding. Great news. As for your article I would say that if you suffer from rmc you end up being in a permanent state of limbo, and so your life gets put on hold. You are either ttc, dreading your first scan whilst hoping that this time might just be different, going through a mc, or waiting for your body to recover before you start again. All the while you try to suppress your hopes and dreams for the future because you know you may have to face the devastation of them being taken from you yet again.Yet you are faced with continual reminders of what you have lost as people give birth when you should have and social media makes this even harder to avoid as these children grow and develop. The questions are hard - suffering in silence when someone asks have you got children and you just say no, not yet, rather than reply "but I've has 6 miscarriages" because you are too British and don't want to create an awkward scene. Having been told at my 6th mc scan by Mr S not to have ivf as it was so expensive, and that by trying naturally the worst that could happen would be another mc! I can safely say that the having now had a failed ivf cycle, the disappointment of failure is bad but nowhere near as distressing as a mc. However on a positive note, I have met some amazing people both in rl and virtually through all of this and I'm sure others will agree threads like these are a total lifeline obsession DH and I have had our relationship tested to the full and are still going strong. It is important not to underestimate the suffering ohs go through too. Also whilst there is still hope that you may one day get there, then you keep doing EVERYTHING you can. To look back in ten years time and to know you hadn't done all that you could would be hard to live with.

I am sure you know/have felt all of this so rant over!! What you are doing is incredible and so important.

Fantastically put bellyD ...x

Yep. What belly said :)

agree with the other comments , the emotional impact miscarriage has is not recognised, I think bereavement training is very important not just by the professionals who work in this area, (still haunted by the rude Cypriot doctor at my RMC), but also in the work place, I couldn't believe some of the comments people made, they meant well but just ended up saying such hurtful things that upset me more.

there is limited support for alot of people, my place have worked has just joined onto a hospital that does take care of its staff, but for others they don't really know where to turn or what options there are out there, what treatments there are.

Belly you have put that so well.
Unfortunately there are no answers as to why some of our babies are lost; but there are answers in many cases. If I lived in London I could have been referred to Mr S on the NHS - whereas my local hospital does not believe in this treatment. If I had followed their advice I would not have my baby. When articles talk about the groundbreaking treatments for mc that we all know about, it can be forgotten that so many women have to fight for access to these treatments - and before they can fight, they have to educate themselves as no-one offers us this information. And all while going through the physical and mental effects of our bereavement, and the isolation caused by largely unacknowledged grief.
I've said it many times, but I do believe I owe my son to mumsnet

Hello all,

Randomly I had a very distressing NHS hospital appointment yesterday (I have now been referred NHS stylie as I am on my 3rd MC). I was at my local hospital in a packed boiling hot sauna of a waiting room. With women with new born babies, all laughing and joking with each other. The delay for my appointment was 2 hours. It was agony and I couldn't do any complaining as I knew I would just end up crying. Absolutely awful.

When I finally saw the NHS consultant they realised I'd had all the blood tests that they carry out, and have prescribed me asprin and progesterone (x2 400mg) pesseries daily from BFP.

Mr Shehata also gave me progesterone (1x 400mg daily) from BFP, 25mg of prednisolone for my borderline/high NK cells from ovulation, asprin to be taken from immediately for my migraines, vit D, high folic acid and omega fish oil.

I am in a quandry as to how best to proceed. I keep seeing people on line saying to start pred from BFP and start progesterone EARLIER, specifically Day 21.

This month I am on day 2 (2dpo) of prednisolone and plan to start the progestyerone from day 21 just 400 Mg daily and then move to 800mg daily if I get a BFP.

Does anyone have any advice on this? Thanks so much!

Tumtimes, I've been using progesterone from ovulation, well 3 days after, when I get a temperature shift that confirms ovulation. But I've doing that off my own back and without anyone's advice. (I have been wondering if it's good for me!) I did get pregnant on this regime (with 10mg from ovulation and 25mg at BFP) a few cycles back. But miscarried at 8.5 weeks due to trisomy.

Ah ok thats interesting brownstag! thanks!
do you know any reason why someone would start progesterone at day 21 in particular? Or does anyone else know why that might be?

xx

I don't know an answer to that, not up on the latest advice though. Mr S told me (some time ago) to take the progesterone from bfp only, so that is what I did.

tums I was told to take progesterone from just after ovulation when I did ivf I didn't get on with the pred so after seeing shehata he told me to take progesterone from ovulation and pred from BFP

I've been told by Prof Quenby to take 400mg progesterone twice daily from day 21-28 then continue if BFP day 28 until 12 weeks and stop if BFN. It's supposed to help prepare the uterus lining for implantation. She said do that for 3 cycles and if I'm not pregnant by then try without as it seems to stop some people becoming pregnant. I was told to take progesterone from BFP by my NHS consultant last time, Prof Q says that is too late.
20mg of pred once a day from BFP.
Clexane injections once a scan confirms an intrauterine pregnancy, for cytoprotective effect on placental cells.
She specifically advises against taking aspirin as it may interfere with preparation of the womb lining for pregnancy (NHS also prescribed aspirin last time)

It really doesn't help that they all disagree with each other but I guess it reflects that this is all new stuff and the research is continuing into what actually works best.

oooh this is really really interesting thanks both! Buzzy weren't your NK Cells borderline too? I am really considering on next cycle doing pred from BFP and progesterone from Ovulation.
I think thats healthier too!

This cycle I will do pred from ovulation and progesterone from day 21 I think. hmmmm its funny feeling like I am kind of self diagnosing almost as to when the best time is.

Can anyone recommend the ahem best er passage to use for the pesseries? V or A? Thanks x

Well... I guess I'd best start getting my head round the idea that I may actually end up with a baby here: all fine at 12 week scan at FMC. Chromosomal tests all fine. Omg I'm officially pregnant!!

Choccy that's brilliant news - congratulations!

Tum always used V, didn't fancy A much and blurb says can cause constipation if used rectally. V not too bad but you need liners because they sort of melt and disintegrate