Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

hi all,

hope everyone is doing good!

just a quick query, i had my Dr S appt next month but was wondering whether he will start me on something right away or will i have to wait until my follow up in November to be given a treatment plan?

Also, does anyone know what his protocol is on recurring CP's?

Thank you in advance!

@HopefulH you are quite similar to me, I am 36 have a nearly 5 year old and have also had 3 mmc (not consecutive but with chemicals inbetween). I think it it's likely your nk cells will either be high or active with dr s, unfortunately he would not allow me to have intralipds done elsewhere, we are in South Yorkshire so it's a ridiculous journey. We haven't tried the protocol yet and tbh im not sure we ever will, but I needed to have an answer for all the losses. He usually prescribed ovulation intralipids and prednisilone but 25mg at ovulation, so that could be the difference for you (but costly and inconvenient with all the travel) x

@Ralowi thanks for your reply. I’m just wondering if I can get the prednisolone prescribed from the recurrent miscarriage clinic, if I could then pay privately to have the intralipids at Cherish, which is cheaper and nearer to me. Plus I can have two weekly scans via Tommys if I ever fall pregnant again. I know Dr Shehata wouldn’t like it but I honestly don’t know how everyone affords the ongoing costs!! I would love to be able to afford it all but I just don’t think we will be able to.

@VenusStarr thanks for your reply. You’ve been on such a journey. It’s so frustrating that we have to seek out the help we need from so many different places. It’s truly exhausting. I recently had a hysteroscopy in Athens for scarring. They found mild scarring and quite a bit of inflammation. I was told I was fixed and could now have a baby 😞. If only it was that simple! It clearly isn’t!

We’ve exhausted all our savings for this year so think I’ll have to wait until the new year anyway to see Dr Shehata. Unless my parents decide to open their eyes to our heartbreak and help us out (not likely).

Hopefully I should be able to get the genetic tests back on this little one by then too.

xx

Thanks for the thread @Sezmarelda1

@comingsoon786110 I’ve not been to CRP yet but am not expecting a treatment until my follow up.

@HopefulH ah I see what you are saying.my issue when I asked to go elsewhere was that I needed a prescription for the intralipids. So you would have to see if you could get them prescribed elsewhere. I doubt recurrent miscarriage clinic would prescribe it or the prednisilone as I don't think half of nhs consultants even believe in immunology worth an ask though and definitely worth seeing about an nhs referral. Sorry to hear about your current loss, it's a horrible time. If a miscarriage wasn't bad enough along a mmc involves so much waiting. Hope it's over quickly for you x

@comingsoon786110 sorry can’t remember properly but I think he waits until the follow up. You’ll go through the protocol he’s designed for you and then you have to sign consent forms etc before he prescribes anything.

Guys another question… im really hoping i can get some help here and opinions..

They test nk cells on nhs at epsom but dont put them in a pregnancy state and see what treatment you would respond to but do this private at crp?

Just worried im wasting time waiting on nhs (likely next year) and dont know if the treatment will actually work for me?! And i may need intralipids?

Am i right in thinking tests scans and treatment for one pregnancy if it works first time is going to be roughly 8k at crp?

thanks

Hey ladies I couldn't seem to find this thread even though I've seen I was tagged In it

So AF arrived on Monday and giving SO another go this cycle, I think it's my last time as can't really keep spending money on it...will think about a embryo transfer if this doesn't work. I'm at the stage where I feel it's time to call it a day and accept life without a baby.

Hope everyone is doing ok x

@HoldingOn2Hope I really really hope this is the cycle for you. It’s hard to know at what point to call it a day. It’s not something personally I’ve been able to face just yet so I wouldn’t want to try and comment other than to say I feel for you & that I hope that you have good support if this cycle isn’t successful.

@Hayley220 hi hayley. I’ve no concrete info but my story may help. In 2015 I had a 4th miscarriage and was seen by NHS in Hayward’s Heath. One of the health care support team there told me about Dr S and was insistent I get referred. She repeated again and again his success stories and called him a miracle worker. I had never heard of him or killer cells. She was referring to his nhs clinic in Epsom but stupidly I ignored her until 2017 when I booked a private consultation. It is expensive and at the consultation he said he’d be happy for me to get my GP to refer me but the NHS clinic had a 2 yr waiting list. At that time I understood the only difference in treatment was that the nhs could not give intalpids. If you have an NHS appointment in 3 months I would definitely wait for that. It’s likely you’d wait that long even for a private consultation. Good luck x

@Hayley220 I registered my previous loss in Feb and then had a phone consultation in June with bloods taken in June/July. I initially got a follow up call scheduled for the end of Oct but kicked up a fuss saying 3 months was ridic and they pushed it forward to Tuesday this week. I haven't found them over helpful tbh - the consultant (not Dr S) didn't really focus on anything other than NK cells and I wanted to discuss all my results, not just this. I know all my results are 'normal' but outside of this, I know absolutely nothing as they won't share your results with you. I guess I have to trust they know what they are talking about. Today I picked up my prescription and I have only been prescribed hydroxy/progesterone and not Pred. As Dr S clinic is so well known within the UK, I do think there is a longer waiting list than other trusts for tests. Let me know if you have any other questions!

@bunnykins123 sorry to hear you have been disappointed with the hospital.

So roughly 7 months from referral to collecting prescriptions? Just need to know what I could be looking at.

Did they explain in the follow up with they have only prescribed hydroxy? And how long is recommended to take it before ttc again?

And are the meds from ovulation? Wishing you all the success now!

x

@Naticle thanks so much for your reply. May i ask did his protocol help you?

It looks like they dont put the bloods in a pregnancy/implantation state to see what drugs would actually work at nhs clinic so that concerns me a bit. They just guess? But like you say only thing they wont give is intralipids.. do you think that really helps having those?

Its looking like I may not be seen until Jan/Feb, and then I am worried about having to take hydroxy for 3 months before ttc. Plus it could be a while before i get results.. so by then I will be 37 (april next year) i just worry time is going by.

x

Does anybody know anyone similar to Amanda Tozer that I could book privately with? Such a shame she is no longer accepting bew miscarriage patients. She was much more reasonable cost wise.

Can anyone give me their experience of taking either hydroxy or prednisolone, and any side effects?

i have read some people just go for intralipids if the steroids etc disagree with them, i have such a sensitive tummy I cant even take omeprazole so would i be wasting my time waiting on nhs appointment to try steroids that may not even agree with me… is this common for them to not be tolerated ?
🥺

@Hayley220 I have a lot of food intolerances etc & had no problems like that on prednisolone but I can tolerate omeprazole so your reaction may be different. I think the most common side effects with steroids are insomnia and weight gain.

@Hayley220 hi and welcome. Sorry to hear of your loss. I went private with Dr S as there was a waiting list. I ended up paying just over 10k in total for the 6 months I was with them. This is now the 2nd time we have been to see the clinic and have spent 7k already since January and I'm not even pregnant yet 🤷🏽‍♀️

@MrsMargot thanks I will have a look

@bunnykins123 welcome. I had the same fears but I only ended up with a moon face which wasn't too bad 😂

@VenusStarr ❤️

@HoldingOn2Hope im feeling the same. If it doesn't work this month I'm going to try ivf. I've been put on Gonal F injections this month so see if it works 🤷🏽‍♀️

Welcome to all the new people x

@Sophi81 hiya, wow, what did the 7k include?

@HopefulH first of all welcome and I am very sorry for your loss. I had a mmc a couple of weeks ago myself. Sending you a hug ❤️

with regards to seeing Dr S, I would say it is definitely worth it but he is expensive. Even if you decide to have the tests and go somewhere else, the tests are expensive so be prepared. For me he is worth it but ask me again in a couple of months when he adds more medication to my treatment and I may change my mind 😬. The costs is definitely something I need to keep an eye on.

would you mind saying what was the anti inflammatory diet you were on to have your son?

@Hayley220 so the 10k included initial tests for both myself and my husband which were around 3k maybe more I can't remember which I think you have to do if you decide to go with CRP. We then tried the superovulation plan and I fell pregnant on my first cycle. So the cost included all the scans, meds, intralipids etc.
We then saved another 10k as a rough estimate for if we want to try again so that we have the funds available. We went back in Jan and to date have spent 7k already which included 6 superovulation programme, meds, intralipids etc. We were told to have a 1 month break after you have had 6 treatment plans. So I am waiting for my next cycle to start and then we will be on our 7th superovulation programme but they have added gonal_f injections to see if it works.
If all fails then we will try ivf next month.

With my first treatment plan I was only on prednisolone, Cyclogest, Aspirin, inofolic, intralipids, omeprazole. I stopped hydroxy within 2 weeks as it made half my hair fall out.

Second treatment plans I'm on about 12 medications, maybe more, and still nothing 🤷🏽‍♀️

@Sophi81 it's so frustrating isnt it? I had 9 SO cycles and feel pregnant on the 9th but sadly it ended in mc - that was May 2020 first lockdown.
This is my 3rd SO since july so I had already decided I was only giving it 3 tries. I think my issue also is I only have a 2 day bleed so I've ready my chances of conception are very low although I have good follicles and a good lining but maybe they are emptying follies?

Also going to try dhea supplement this month and maybe add royal jelly in too.

Anyone else tried dhea? Argc recommended it to me and I took it but didn't have an egg collection so it was pointless I suppose. I'm beyond fed up but there's a little voice in me that keeps telling me to give it another go!

Hello to all those who are new on here. I really hope we all have positive news in coming months xx

Oh and another thing I wanted to ask who's if for the ovulation intralipids? I just think it's another expense but at the same time think should I just try them with this cycle?
I'd rather have them with a positive as I'm on pred, hydroxy and humira too so isn't that enough? 😆