Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

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

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

@NICK7nick7 amazing!! What a relief for you.

Does anyone know with these restrictions are we allowed stay in a hotel overnight near the clinic? We have a 5 hour drive each way for appointments so was hoping to stay over in Epsom for the next one, but now I’ve seen they’re in tier 4 so not sure what’s allowed.

@Tinpo the guidance says ‘You cannot leave your home or the place where you are living for holidays or overnight stays unless you have a reasonable excuse for doing so’ and I would say that a medical appointment is definitely a reasonable excuse for doing so. If you can’t get a hotel, etc. as think they may have had to close, then you could always try Air BnB. Such a long drive for you bless you Xx

Thanks @NICK7nick7 - we’ve got the travel lodge booked and it looks like it’s still open so fingers crossed it will stay that way. Last time we left home at 5:30am for an 11am appointment, it was so exhausting and I spent the whole drive watching the sat nav ETA terrified we’d be late!

Sorry for the daft question
When do you start taking the cyclogest from ovulation

1. The day you get your peak on OPK

Or

1. The day after you get your peak
2. Another time ?

Thanks in advance guys I'm new to the progesterone and was just thinking usually you don't ovulate on the day you get your peak but I'm sure that's when the clinic told me to take them and then do a test 10days after my peak counting the next day after peak as day 1 ?

Hi all, just looking for some advice. Did you have tests under the NHS before deciding to go private?

I've had 2 MMC this year and I think I'm having a chemical now (positive tests have slowly faded to negative)

Im waiting to be seen in the RMC but im starting to think I might have a problem with NKC. I already have an auto immune condition and underactive thyroid. I take prednisolone and hydroxy daily for this along with other medication.

I'm just not sure what to do, it looks like a lot of money to spend but I know it would be worth it if I got answers.

Thank you

Hi @LaurenAB94 i do it a couple of days after, so say Friday was peak, Saturday was ovulation, then I'd start on Sunday as 1dpo. I do the cyclogest morning and night rather than all in one go, I feel a bit better spreading it out. Good luck! 🤞 X

@VenusStarr thanks that's what I was thinking do it a day after ovulation.
@Wheresmyrainbow I went to the RMC and they were useless wouldn't take any medical conditions into account and they didn't offer me any testing only said they would scan me every 2 weeks until 12 weeks during my next pregnancy even though I explained I've never got to 12weeks before.
For me it was worth it going private I now have answers and a plan to follow but you have to do what your gut is telling you. Wishing you all the best

Hi @LaurenAB94, I would be sure you've ovulated before you've take progesterone. Like the steroids, I think it can mess with your cycle. I started doubting my peaks and temped at the same time in the end and sure enough they differed by a day or so and I ended up being really sure I'd ovulated and then medicating. Personally, I found the monitoring stressful but lots of ppl found it easy.

Hi @Wheresmyrainbow, sorry you find yourself here. A lot of us on this forum are under a private clinic with the lead consultant there Mr S. A few ladies are under Tommy's or local RMCs. Many of us take pred or hydroxy, as well as other meds depending on our individualised plans and blood tests. After uhhming and ahhing about spending the money (as I always thought there was something up despite NHS tests saying 'nothing wrong'), I took the plunge in Feb to see Mr S and I'm currently 20 weeks pregnant with my rainbow after a 2nd trimester loss and two first trimester losses. X

Hi @Wheresmyrainbow - earlier this year I had losses at 10.5 wks, 6 wks, then a chemical (for me they kept lasting for less and less time) and went straight to private as wasn’t willing to wait for the NHS. Plus they don’t test for NK cells and after researching/ speaking with a friend who’d had successful treatment, I decided to go to Mr S. I was seen within two weeks of calling, diagnosed with a high number of and highly active NK cells, put on treatment and am now 15 weeks pregnant with our baby. I am still waiting for the NHS to contact me after being referred back in late spring... (but my experience of local services this year has been awful during Covid; yours may be better).

I lost a twin at 8 weeks during this pregnancy but we have assumed it was chromosomal bad luck. The costs do add up (not just the initial testing but the ongoing meds and scans etc afterwards) so make sure you have the funds or can borrow, but for us it has been totally worth it. Good luck x

@KtAgs thanks that's what I was thinking I have irregular cycles so really difficult for me to know when I ovulate Im currently getting High fertility on Clearblue advanced so hoping peak won't be far behind. If it wasn't for the progesterone timing I wouldn't bother with doing the OPK.
I suppose it's better to take the progesterone a few days after ovulation than a early incase it causes the egg not to be released or something. I'm starting the superovulation with Dr S in January if not pregnant this cycle so I don't have to worry too much about timing 😊 thanks for your advice that's helped

Hello ladies,

It’s nice to meet you all, though sad it’s on a thread like this. I had read a few of the previous posts and would like to send my love to you all.

I have a 2 year old and have had 2 mc this year. I am under Dr S clinic and am currently taking hydroxy, Humira, aspirin etc. 2nd Humira injected on Xmas Day, woo!

I am a teacher so had to wait ‘til the Xmas hols to take the Humira, so it’s been a bit frustrating having to wait to TTC. Hopefully can start at the end of Jan.

I’m petrified of being pregnant and petrified of not being pregnant! I’m getting my head in muddle about ovulation timings, cytologest, intralipids etc... also superovulation which is something we are considering.

Could I ask, does anyone know why some ladies are advised to have intralipids from ovulation and some from a positive test? Just curious.

Also wondering if the Tier 4 restrictions affect appointments at the clinic for women who aren’t pregnant yet, but are TTC. Had a look at the CRP clinic website yesterday but couldn’t see anything.

Anyway - bring on 2021, please be better than 2020 (you were a shitshow 🙈). Really hope lots of dreams come true next year xxx

Hi @ginandoreos I had them from ovulation - not sure why it’s different from others but I’m on the complex plan and my nk levels were almost 4% so that could be why (to stop them attacking as early as possible?). Would need to ask Dr S to know for sure.

The government guidance is that medical appointments are exempt from restrictions so you don’t need to worry either way x

Hiya
I am new to this thread but had a question that maybe some wise folks on this could help with. I have ivf abroad and miraculously fell pregnant and found out two days ago. BUT I have had 5 miscarriages in 18 months so not holding out much hope. I just got tested by Coventry and was told I have high natural killer cells. How do I get prednisone now with covid? I am desperate to give it a go but have no idea how to get a prescription etc. I am still to discuss in depth with consultant after Christmas...

Hi @ginandoreos
I had intrilipids from a a positive test was also in Hydroxy & Cyclogest & aspirin, I was also on complex plan so unsure why some have from ovulation and some have from positive test but I know both ways had worked for few of us on here recently.
I’ve been going to the clinic all year pretty much from lock down and not had any problems with my appointments all Intralipids appointments are classed as essential medical treatment, unsure what new appointments will be like now. X

@Rebecca9876 thank you for your reply - yes that makes sense - hopefully intralipids will be heading my way end of Jan..!

Last few days of the Christmas binge before I start trying to be 'good' again...

I hope, despite what everyone has been through (and the added joys of COVID), that you have all managed to enjoy some Christmas celebrations. 2021, please be kind....

@LRL12 Ahh thank you so much that's really useful to know. Yes, it is strange isn't it - I really hope it doesn't take too long for us (it took a year to conceive my daughter) as it's going to get pretty pricey! I am very fortunate though that I live nearby. My heart goes out to everyone who has to travel a long distance for each appointment.

Hi @Unicorn9 I'm sorry I don't have anything useful to say, except I'm so sorry for your losses and have everything crossed for you this time round. I know that some people have telephone conversations with Amanda Tozer, who prescribes various medications, but I think she has restricted what she can offer due to COVID. I hope somebody else here can help you out XX

@Unicorn9 I've sent you a PM

Hi @ginandoreos, i think the difference is because some women are not on prednisone (hence intralipids from ovulation) and some women are on prednisone and so have intralipids from a positive test. I am on the complex plan too and tried steroids for 3 months but they really didn't agree with me. And I asked Mr S for an alternative. He was more than happy to change my meds because he was worried about the 2nd wave. Hence I think why so many women are now on ovulation intralipids now. I got pregnant on my first month of switching. Hope that helps. X

Also thank you ladies for the well wishes. The bleeding did completely stop for a good few days which was nice, but last night I had a little bit of bright red while wiping, just after a thick bit of discharge - I'm wondering if that was the beginnings of my mucus plug?? Nothing so far yet today but not feeling particularly hopeful

@ginandoreos @KtAgs I don’t think that is the reason as I’ve been on pred but had intralipids from ovulation. I guess someone would need to ask Dr S to be certain but at least it shows how individualised the plans are! X

@Unicorn9 I am
Due to go to Coventry next month , does it hurt ? This is my concern as what if results are high and they won’t give me the prescription anyway x

@ginandoreos I think there's something about the levels and what he finds. As to what treatment plan he decides. A friend of mine is on Intralipids from positive test but I'm from ovulation. Our results were very different- he found 6 immune issues with me and PCOS and so felt that I needed intralipids monthly even though we have a 4 hour drive to get there! 🤷🏼‍♀️

@Wheresmyrainbow we went through the NHS first. It was something we had to do before I could convince anyone that we needed to spend the money and go private. I wish we hadn't but I know my husband is fully on board with what we're doing now and he absolutely wouldn't have been if I'd tried to force him to go after our second/third loss. ( instead we went after 4)

I think it also depends on what your losses are like. The NHS will find a cause for some women. Just not most 🤷🏼‍♀️

Ah I see @Rebecca9876! The plans really are individual to each person. Very reassuring x

Finleysmom84 I didn’t find it too bad and they were honestly really lovely to me when I went and cried my eyes out at all the baby photos on the wall. I’d take paracetamol before for the cramps after but I drove myself 2.5hrs home with no paracetamol and it was fine. The results took about 4 weeks and I am waiting on the next set as I only went last Monday. (Which is partly why I am stressing as I must have been pregnant when they did the biopsy so how this will ever work I don’t know).