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!

Duggs I am soo sorry to read this awful news! Its not FAIR!!!! Mate I'm thinking of you xxxx

6

I'm so so sorry duggs. There is no justice. Look after yourself x

Just posted on the other thread that. I think I'm going to get my nk cells re tested again.
Can I also ask you ladies to write your treatment programme down of your most successful pregnancy.
See if we can get a helpful list going
Hopefully?
Many thanks

duggs I'm so sorry to hear your news, it's just shit for you.

I've become quite ill in the last few weeks with SLE (Lupus) it's a serious auto immune disease causing me multiple joint pain and chronic fatigue but can also affect all the major organs.
I have always been a bouncy energetic person but I'm now so breathless in the mornings I can't even drive my son to school. I have to carefully plan out my day so I don't over tire myself. I can't walk my dogs or do most things that I enjoy. Driving for 10 minutes leaves me needing to lie down for an hour.

So I find myself in the situation where they can't stabilise my Lupus or regulate my immune system because I'm ttc, the drugs are contraindicated in pregnancy (except Hydroxy which I can't take as it affects my eyesight) so I probably won't be able to work or feel better until after I have a child and I can't get pregnant as the pain drugs I have been given stop me from ovulating.
Lupus can be dangerous in pregnancy and has definitely caused my 5 previous MC. My risk of MC, premature birth and parent and child death is higher.
I'm possibly facing a life of chronic pain and fatigue, I've been asking myself can I even cope with another child when I already have a 10 yr old DS with ASD and hyperactivity.

DH and I had the chat last night..do I stay sick, come off the pain meds and TTC or forget about another child and get stabilised and focus on doing what I can for my DS.
I'm waiting to hear from Dr S about whether I can take the super ovulation drugs he has given me whilst my lupus is so unstable.
It feels like our issues are insurmountable now. It makes sense that we give up. We have decided to give ourselves a month to decide what to do.
We are so sad about it all

Accidental, Really sorry to hear what you're going through.
I expect you know all about this already, but during my researches on DHEA, I read about its being used as a treatment for Lupus. And as that is also good for trying to conceive, maybe that's something to consider. Looking at the literature, it seems important to get it prescribed in lupus, so that you can guarantee its purity and strength.
www.hopkinslupus.org/lupus-treatment/lupus-medications/dhea/

duggs I am so sorry it is very unfair.

accidental I'm sorry you are feeling so poorly. It sounds like you have a very tough decision to make. I wish you and your DH wisdom as you decide what to do for the best.

Thanks Brownstag I'll talk to my rheumatologist about it. I seems from the article you've linked that DHEA should not be used when TTC or pregnant?
Even if it could help, I don't hold out much hope. Medicine works quickly and efficiently in France but they are probably 10 years behind. They don't like new medicines and lots of specialists are not knowledgable in recent medical developments. They seem to think if it wasn't researched or developed in France it either doesn't exist or it's not to be trusted!

Certainly not while pregnant, but while ttc yes, if you have low AMH/are an older lady. It helped me conceive twice this year after over 2 years of nothing. But I did suffer awful acne on it; I'm now trying to find the optimum dose that improves fertility without the androgenic side effects. It has other good side effects for me; reduction in anxiety, better sleep, better mood, more fertile mucous, increased oestrogen levels.
I think you can buy it from the Center of Human Reproduction website. That would guarantee the quality. They are the ones (in Canada) who've been pioneering the use of DHEA for fertility.

duggs as said on the other thread, keep positive as I am sure you will get there. My list of daily drugs etc once pregnant are:
40mg pres plus omazeprole
200mg Hydroxychloroquine
Low dose aspirin x 2 tablets
800mg Cyclogest

Vitamins:
25ug Vit d
Pregnacare plus
200ug Selenium
3300mg High grade fish oil

Intrallipids at bfp, 8, 12 and 16 weeks.
With ndukwe I have had intrallipids before pregnancy around ovulation which are then repeated every 3 months if not pregnant.

With this pregnancy it is changing slightly as advised by mr ndukwe. I am still taking the higher dose of 40mg pred (ndukwe said to take 20mg). I have to stop the aspirin as it can effect womb lining once pregnant and use 40mg clexane instead. Plus I have been told to take 500mg calcium twice a day. Mr s also now says to double up on vitd3 so I am doing that too.

I am also taking 1000mg vit c and 400iu of vit e as zita west says it can help prevent miscarriage.

Other things I do are resting as much as possible, no exercise or lifting and drinking 2-3 litres of water a day. No caffeine, no sex, no alcohol, no hot baths.

Hope that helps!

For anyone that doesn't read the other thread, I got a bfp yesterday but trying to pretend I am not pregnant at the moment as it scares me so much.

accidental I think I would get your health sorted out first before TTC. I doubt your body will let you conceive if it is out of balance anyway. Sorry to hear you are having an awful time.

I was also taking DHEA and coq10 before this pregnancy. Have stopped them both now though. It's hard to know if they helped me conceive but I noticed extra fertile mucous too plus my sex drive went through the roof. Make sure you get the micronised dhea though. I got mine from America. The coq10 was from Costco, cheapest place I could find it!

duggs Just a thought, but Serum follow Dr Braverman's protocol and use neupogen quite a bit now for recurrent miscarriage issues; it's part of my protocol. I wonder if this wouldn't be the/an answer for you too? Just a thought - I think it's covered in one of the links I sent you.

accidental - I know it's not a perfect answer, but have you considered surrogacy? I'm just thinking that that way you could take the meds you need to get your lupus under control AND still get a baby with your own eggs & hubby's wrigglies.

Yes, surrogacy would be an excellent solution. If only there were surrogates on tap for all of us! I suppose it depends on how important you consider actually being pregnant yourself, or just producing your own child. I could easily dispense with the whole pregnancy thing if that were an option for us financially. No postnatal mental issues for one, and an inability to obsess over every pregnancy symptom another. And in your case, accidental you could stabilise your own health and not have to worry about jeopardising it.

Accidental that sounds awful, I too would concentrate on my health for a while but it's easier for me to say that as I don't (yet!) know the agony of wanting a second child and miscarrying. For me it has been incredible so far to have one and to actually become a mum. So personally, my feeling right now is that for me I would stop TTC, get as healthy as possible and enjoy life. Surrogacy sounds interesting too, no idea how you find people though.

duggs. My list of daily drugs once pregnant were:
40mg pres plus omazeprole
200mg Hydroxychloroquine
Low dose aspirin 75mg
400mg Cyclogest

Vitamins:
25ug Vit d
Pregnacare plus omega 3
200ug Selenium (off my own back, Mr S said why not)
125mg thyroxine as per usual

Intrallipids at bfp, 8, 12 and 16 weeks.
25mg Pred from ovulation
Hydroxy a few weeks before got pregnant

Sue, cautions congratulations! A new level of mentalling to begin for you again. Will be keeping everything crossed for you.

duggs I put my protoxol on the other thread, I tried DHEA and didn't notice any difference with ewcm, just lots of acne, never fell pregnant on in. But it works for some and not for others

I believe Gorgy does the neupogen now

accidental big hugs I am sorry you are so unwell, take time to think about the future

I know a lady who is a surrogate, there are a few out there and there are agencies you can use but it is very expensive sadly £15,000 +

duggs the pattern that you just followed with this mc is the same as my last 3mcs and also of number 4. On each occasion I had a scan at 6 weeks where feck all was seen (empty sac) scan at 7weeks showed hb but measuring behind with sac out measuring fetus, to no hb at 9 weeks. One of these I know was a trisomy and the others have been so similar that I feel they probably were too.
My treatment this time was all the normal Mr S stuff, plus clexane and I took high dose folic acid prior to conception (the only thing I did differently). I'd also been on a largely carb free diet.
accidental I'm sorry to hear of your difficulties. I guess common sense says put your health first but I have found that common sense has rarely prevailed in my life with regards to this particular journey! Xx

It kind of sounds chromosomal
Doesn't it? Your pattern and mine ? Do you mind me asking how old you are clabbage ? I'm 36 almost 37 but started all this at 33!

Just a quick news flash from me. I've been speaking to professor quenby about an interview and she had some info on embargo until today. Their studies have shown that steroid treatment can be confirmed as effective on preventing recurrent miscarriage. I quote:

Led by Professor Jan Brosens of Warwick Medical School, the team found that elevated uterine NK cells in the lining of the womb indicate deficient production of steroids. Deficient steroid production in turn leads to reduced formation of fats and vitamins that are essential for pregnancy nutrition.

This study, published in The Journal of Clinical Endocrinology & Metabolism, is the first of its kind to provide an explanation for why high levels of NK cells can cause miscarriage

.Siobhan Quenby, Professor of Obstetrics at Warwick Medical School, explained, “This work is really exciting because after years of controversy and doubt we have a crucial breakthrough. This means, quite simply, that we have excellent scientific justification for steroid based treatment to prevent miscarriage.”

Ok so that is quite a different angle then from anything we've heard before?

Hurrah for Prof Q

Well only that there were a lot of people who didn't necessarily believe in the nkc theory and suspected succesful pregnancies through treating with steroids were probably down to a placebo effect. So nkc treatment and steroids have been legitimised. So nothing new to us, but new to some medical practitioners!

Very interesting, Freelance. I'm wondering whether that might also explain why my DS was small, at 6lb, when all other babies on both sides of the family are usually whoppers.
It also raises other questions, though, such as why hydroxy has an effect, if it does, as that doesn't work directly through a steroidal action as far as I know.

Thanks everyone. There seems little doubt in mine or my husbands mind that we need to stop ttc. Now confirmed by Dr S and my rheumatologist too. It's a long term decision as it can take years to stabilise Lupus. I'm already 40 so our chances seem to slip further and further away.

It feels extra sad because I have no family apart from my DH and DS, a big reason to keep trying for another baby was to have family for my DS when he is older. I can't bear the thought of him being on his own. He's so vulnerable with his autism. He's one of life's innocents.

Thanks for the suggestion of a surrogate. I would have no problem with that, I'll discuss it with my husband. He wasn't supportive of egg donation so I suspect surrogacy will be a step too far for him. Buzzy I'll PM you for your contact if we get that far.

I wish you all the very very best of luck with TTC, having sticky pregnancies and happy, healthy babies. X

Good luck Accidental. I and several others on here totally understand that overwhelming need to bring a sibling into the world for our single children, and the decision to stop ttc for now must be a very sad one. We adopted a cat this week and our DS has started calling her his 'sister'. Funny, but tragic really.
I don't know what the laws are surrounding surrogacy in France, but I found this site very helpful when I looked into it, and there are some lovely success stories on there. Your husband might move the goal posts in his mind once he realises ttc isn't a sensible option now.
www.surrogacyuk.org/

duggs I'm 41, started miscarrying aged 35. Eight in total: One chemical, seven between 7 and 12 weeks.
So I've gone mc, baby, mc, baby, then 6 mcs and now 21 weeks. Why I ever tried for another one after my second son, I can't explain but I guess at that point I didn't see myself as a recurrent miscarrier and once I'd started, I didn't know how to stop. Success has always felt like the only cure for all the loss but who knows? Hopefully, I can let you know in 19 weeks!
accidental I'm so sorry that things are so shit. I hope you are soon well and you can find some peace x