Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

@Crystal2020 thanks, I should be knowledgeable about that stuff as I'm a nutritionist too  It's hard isn't it that people expect us to snap back to our normal selves after a loss, but I feel like I've changed a bit with each loss. It's just about keeping going.

@KtAgs thanks, glad you've got a talkative partner! A book is a good idea, or a chat group for all the men going through this although they'd probably be more reluctant to chat than us...

@FrannyAnny82 oh so sorry for the heartbreak, it's just not fair. How long have you got off work? It's extra hard to stay distracted and busy during the lockdown. I think TTC ruins a lot of couples sex life, but hopefully not forever.

@Countrygirl220 how are you? Hope the sporting had subsided?

@peperethecat good luck, it seems like things are moving quickly for you which is great
X

@HoldingOn2Hope I forgot to say, that really sucks to be getting such messages from your friend. It's just unfair and very insensitive if she knows what you're going through.

@Crystal2020 just saw your message. Glad to hear your lining has improved. I've also started on the hydroxy, am just worried now that it may not be effective as the pred. He did give me the option of continuing the pred instead and now I'm worried I've made wrong decision...
@KtAgs are you meant to be taking both together? Great that you're getting the corona test.

@Eeviee Both together but only if I get a positive antibody test. I'm on the complex plan because of my bloods and late loss. I imagine he'd be thinking of the same for you tbh.

Thank you ladies for all your msgs of support. She's one of my best friends and miscarries herself last year so I know she's probably just as worried and scared. She has a little boy already and knows about my trio of mc's plus the treatment with Dr S. I'm probably just being over sensitive but do feel like saying to her 'I'll have the morning sickness and nausea if it meant I could have a child!'

@Crystal2020 that's fantastic news about your lining! Great you've had the trigger shot too :)
We went as per Dr S' plan with timed intercourse on the days he suggested once a day. I'm sure we dtd one day before his suggested dates too ;) I kept thinking because of the multiple follicles and trigger I may ovulate earlier so didn't want to take a chance of missing ovulation. I'm really pleased about your lining as I know how down it made me feel and it took me 3 months to get it right.

@Crystal2020 great news! I think 8 is optimal. Mine has been around 7 both times I’ve conceived so I think you’re fine!

With my son we had sex exactly when Mr S said, so the day after the trigger and then the day after that.

This time we had an extra go so day of trigger and then next 2 days. I wouldn’t want to go more than once per 24hrs to let the sperm regenerate! My DH has never had his sperm tested but I assume he has no issues.

Thanks so so much @HarrietM87 @HoldingOnToHope - we will definitely try that approach this time as we did it twice a day for 2 days last time and were exhausted afterwards haha! And it obviously didn’t work!!

@Eeviee I agree with you these losses have changed me a lot. Even looking at pics from a couple of years ago I think about how different & carefree I was before I knew this whole world of pred etc even existed. God I hadn’t even thought about the hydroxy potentially not being as effective. I kind of just went along with what he said and I hope I don’t live to regret it...

My follicle measures 18mm, my lining measures 7.6mm, apparently everything looks great in there and we are doing intralipids and Ovitrelle tomorrow. It's go time!

Hi everyone, thanks for all your kind thoughts. I'm doing okay - up and down really. I'd have been 15 weeks now, I wish I could stop counting.

I just saw that Dr S wants everyone to switch to hydroxy - can I just ask how do you take it and how far in advance of ttc do you need to start it? Is it as effective as the pred? As you can probably tell, I'm keen to try again but loathe to try anything new after the pred worked last time.

Dr S signed me off for 8 weeks but I'll probably go back next week @Eeviee, I feel like a bad employee. Hope you're doing okay.

@HoldingOn2Hope people can be sooooo insensitive. One of my good friends was full of sympathy then as soon as we got off the phone put a gushing post on fb shouting out to all the amazing mums out there. Not one for me then 😂

@FrannyAnny82 no wonder you’re up and down, you’ve been through so much. The hydroxy is 2 tablets to be taken after lunch. I understand that you have to take it for 6 weeks before trying. I’ll be on both the hydroxy & pred this time & just the hydroxy next time. I like the fact that it’s being used in Coronavirus treatment & I think that will reassure me a little when I eventually have to start going back in to Central London for work. But would love any info anyone has on its effectiveness? X

Hi ladies - oh my goodness so much to catch up on!! I can't name you all as I think everyone of you has said something of interest to me in the last few days but the update from crp was welcome reading so thank you @wishing5star for posting that up. I am going to up my dose back to 400 of hydroxy tomorrow and spk to dr s about the pred in my telephone app on Thursday. Actually quite relieved not to have to go all the way down there just for my 3 month follow up as I'm not sure it's going to say much? Unless anyone else has any thoughts.

Can I ask - when you start the super ovulation programme, how many more appointments do you have to go to i.e what's the general schedule for a SO cycle? I'm just trying to suss out how quickly I might want to start one (whilst I'm off work furloughed) as getting days off weekly for appointments when I'm back will be literally impossible.

@Crystal2020 - I hear you with that thought - i often wonder about the thought that we just blithely put our faith in these methods and hope for the best!!

@harrietM87 it's interesting what you say about the intrallipids as I've read such mixed reviews about how worthwhile they are - and they are expensive too!

Welcome @hippo20!

@crystal2020 can I ask why the Alpha Lipoic acid and what's NAC?

On that note - is anyone taking any other supplements without direction from dr s other than those he's says (multi vit/vitd and omega 3) x

I'm taking ubiquinol but I ran it past my gynaecologist and he was fine with that.

@FrannyAnny82 hydroxy is meant to be taken for 6 weeks to get into your system. But I had a consultation last Monday and he told me to take a double dose I.e 800mg (4 tablets) on day 1 as a loading dose, then go to 400 mg day and that would be effective immediately.
Obviously don't anyone do that without speaking to him first!! I forgot to ask if it was effective as pred, but I thought of the question after and emailed Lorna, the nurses replied and said yes is as effective as pred but if anyone has a consult with Dr S soon I'd be keen to hear what he has to say about effectiveness.

@hrtbrk2 NAC and Alpha Lipoic acid are both antioxidants, they may help with egg quality. I take quite a lot of different supplements but I would necessarily recommend to everyone as people's needs are different. I take higher dose Vit D because genetically I can't produce as much but check my levels regularly . I've actually just done a test to check my DHEA levels too.

Hi @hrtbrk2 I called up the nurses, said I wanted to start the SO and that I was aware of the corona risks etc. Then I had to go to the clinic to collect the letrozole (the drug you take to stimulate your follicles) to get started. On a normal cycle you take the letrozole from day 2-6 or day 3-7 and go in for a scan on a day usually between 10-12. This week I had to go in twice (expensive!) as he wasn’t happy with my lining on Monday and we weren’t sure how many follicles would end up being mature. But a standard cycle should ideally involve just one trip to the clinic.

The Alpha Lipoic Acid and NAC (N-Acetyl Cysteine) are both antioxidants but I’m sure there must be more to it for her to recommend them to me. She mentioned something about mitochondria! Need to speak to her & see if I should keep up taking them. In addition to the Dr S supplements, I take Symprove probiotic before breakfast and Zinc and Magnesium before bed (based on blood tests I had done earlier in the year). X

Thanks for all the info! It'll be so nice not to take the pred again. Especially after the months I've just spent on it.

I take ubiquinol, NAC and r-alpha as they apparently give the cells the energy they need to multiply correctly. I also take proceive, b12, b6 and occasionally zinc.

Where did you get your DHEA test done @Eeviee? I've just ordered some but bit scared of taking it. The pred apparently lowers DHEA levels so hopefully it will make a difference.

Good luck this month @Crystal2020! X

Thanks so much @FrannyAnny82. It’s great that you’ll hopefully be able to try again soon & I’ll be keeping everything crossed for you. X

@FrannyAnny82 it's ok to be up and down, this whole journey is such a rollercoaster isn't it? Don't feel guilty for being a bad employee, you've been through a traumatic few weeks. Although I did return to work within days only as I needed to keep busy - it was great to keep my mind off the miscarriage but as soon as I had some time off it really hit me hard so when i look back I wish I'd taken the time to process and heal. Sending you virtual hugs xx

@hrtbrk2 I take aspirin, vitamin d, cod liver capsules as recommended by Dr S and then procieve and coq10 too.
During SO I'm on the pred and progynova x4 daily so it's like a tablets every hour as well as my thyroid meds too!

@FrannyAnny82 I did it through Medichecks. You need to be really careful with DHEA as it's a hormone. Did you order from the USA?

Mitochondria help produce cellular energy, this is what declines with age and producing good eggs takes a lot of energy so a lot of the supplements help support this, ubiquinol (coq10), NAC, ALA etc...

@Crystal2020 from memory you may have to watch Magnesium if taking Hydroxy, think it affects medication effectiveness. Your nutritionist should be able to advise you x

@Crystal2020 good to know about SO, I asked about it too but seeing as I live so far away I think it's impossible for me right now. Plus my period still hasn't come so not idea where I am in my cycle.

Thanks so much @Eeviee - I will definitely check. Do you do detoxes to try and counteract the effects of all the meds we take? I’m starting to worry about how much stuff is building up in my system...X

I said to my husband yesterday how difficult this week would have been if we lived further away @Eeviee so I totally get that re.superovulation. I don’t drive so my husband has been ferrying me around. We’ve both told our bosses what’s going on which has helped when we have had to disappear for whole afternoons! X

Thanks @Eeviee. I had a form from my doctor to get one done on the NHS but they've shut all that down now. I ordered a eurovital one from the US that my friend used before her successful ivf but I won't be taking it until I can get tested.

Have you had your results back yet? X

Thanks for all your replies - there has been so much on the thread this week so sorry for not reply to each of you.

At the moment I'm wfh and can isolate fairly well but I normally teach in central London (and commute in), so when schools open again it will be trickier.

I think you are all right though that we just need to work out what we are comfortable with and then take as much precaution as we can. It's really interesting to see the update from the clinic though, last time I looked it was still advising not to try at the moment!

Does anyone know more about the hydroxy? If it doesn't lower the immune system then how does it help with nk cells? Also has anyone been prescribed it as an nhs patient? I'm a bit worried it will only be available to his private patients.

I'm feeling a bit more positive about it hearing from you and seeing the updates though, so thank you

@Hippo20 I think the hydroxy does suppress the immune system. It’s being trialled for covid because people are dying from it as a consequence of their immune system overreacting to the virus and attacking their lungs and other organs (“cytokine storm”).

@Hippo20 Dr S said yesterday that hydroxy does the same job as the pred but it just works in a different way. He said he’s been using it for 15 years already. X