Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

@VenusStarr @StillTrying10000 thank you for your thoughts on the male testing. I do hope we have made the right decision. I'm just looking for a reason it hasn't worked, but I have to remind myself I fell pregnant many times before and it has only been 4 cycles. Seems like a lifetime but it's not that long to be trying. Let's hope for good news soon.

@VenusStarr The injections sound like a good option, although I understand how daunting it is with the cost.

Sorry you're having to deal with the results. It's probably nice to have parked it for a while and given yourselves a bit of a break from it all. I guess if you know, you can at least have a plan going forward. But it's not easy at all, and I'm sorry you're having to go through it all. Sending lots of love for whatever you decide to do. If you need a bit more time, just take it.

@StillTrying10000 how are you feeling about your tests? Are they at CRP?

Hi all

I’m just after some advice from those being treated by Dr S.

As background I’m 33 and in the last 18 months we’ve had 4 losses- 1 chemical, 1 at 6 weeks , another chemical, one at 11 weeks (later diagnosed with trisomy 15). I did the CERM trial with Tommys clinic with Professor Quenby and caught again this month but sadly I’m now losing again- so this will be our 5th loss. After a 3 month trial of being poked and prodded I’m gutted.

A friend recommended Dr Shehata but as I’m sure everyone is, I'm truly terrified of losing- I don’t know how much longer I can keep doing this. Im also extremely worried about spending thousands as unfortunately my husband and I just don’t have the money.

So far with Tommys all of our tests have come back normal including genetic/karotyping.

My biggest frustration with Tommys was just the constant battle I had with asking for things like aspirin or to have my thyroid checked etc. I emailed Professor Quenby a number of times and never got responses so ended up just feeling like a Guinea pig on their trial- which inevitably hasn’t worked for us.

Sorry for the vent. I mid miscarriage so emotions are high and I’m so lost with which Avenue to turn down next. I know it’s not a guaranteed success with Shehata but equally just keen to understand if you’d recommend him from a treatment / communication side of things x

@jennymarie13 gosh I'm so sorry, that sounds horrendous. Have you had any tests to see if your Natural Killer Cell levels are high? Dr S has lots of treatments to treat women with those. It will be thousands of pounds though and still no guarantees, although a lot of women do have success quickly, most famously comedian Katherine Ryan. You tend to find the women that end up on these forums are the ones of us who haven't had success yet though. Do you have any other specific questions we can help with? xxx

Thanks so much for coming back to me so quickly.
So Quenby tested my uterus NK cells and They were normal so I guess I was trying to establish the main difference.
The only thing I’ve been prescribed is progesterone. She wouldn’t prescribe me aspirin as she said I didn’t need it.

@jennymarie13 I've DMed you x

@jennymarie13, I'm one of the women who had success with Mr Shehata following 5 losses, 3 on his treatment plan (one was just after I started treatment, so it may have not yet fully worked and other two were bad luck where no treatment would have helped). I did thorough research before deciding to see him out of the 3-4 specialists in the field here in the UK and he seemed to be the boldest in terms of trying different treatments. Nothing will give you quaranteed success though. It may or it may not happen and it will take time and preservance. I was under his treatment for 2 years until my successful pregnancy (multiple rounds of superovulation that gave us 3 pregnancies with the last one giving us our little miracle). Mr Shehata is not a hand holding type, but I found communication with the clinic generally good and reasonably prompt. I recommend to have a list of questions ready that you want to wish to discuss at your appointments.
I'm very sorry for your losses, having experienced both, chemical pregnancies and chromosomal loss, I know that nothing can be said that helps with the pain. Only time will heal. I cannot tell you what to do, but my advice is to sit down and look over your finances and make a plan how to manage and what options are available to you. Then speak to the clinic - I guess it would be useful to have at least one consultation to see how it feels and if you can work with them/Mr Shehata. If you want to know what the initial tests cost, feel free to drop me a private message and I can give you the range. Further costs will depend on your treatment (will you need surgical procedures, will your GP agree to prescribe some medications, will you do superovulation). It is my understanding that Mr Shehata does not simply throw in expensive medications, but it's impossible to know what you may require.
Best of luck and I keep my fingers crossed things will work out for you eventually.

I'm very sorry for your loss @jennymarie13 ❤️

I was also under Tommy's initially but had 2 further losses under their care (one we tested and was chromosomally normal). I'd had the nk cells biopsy with Professor Brosens and my first was normal so he prescribed cyclogest and that resulted in my 4th loss, so we went to see Dr Shehata then. I also had a call with Professor Quenby but she was pushing the trial and we didn't feel comfortable with it - feels unethical to essentially find a reason and then give you a placebo. Plus by that point Dr S had diagnosed a cause, so I went on his plan. We then couldn't conceive naturally, so started ivf. I went back to the implantation clinic the cycle before my ivf transfer as I'd wanted the biopsy to serve as a scratch. I did a fresh cycle with Dr S protocol but had a chemical pregnancy. My biopsy also came back very low. Professor Brosens said I'd need to gave a third biopsy to confirm low nk cells but I haven't been back yet.

I did the Endometrio tests (which includes the chronic endomitritis that professor Quenby does) as I bled early in my ivf pregnancy but got a late positive. But my tests came back totally normal, so I'm glad I didn't do the trial.

I added extra progesterone and my second ivf transfer worked, again on full immune protocol, but I had a missed miscarriage in November. I'm waiting for cytogenetic tests but this baby measured the exact same as my 4th loss, so not confident that the immune treatment actually worked for me.

It's a long road and even getting answers hasn't resulted in a happy ending for us. I've been under Dr S for over a year now. We're sticking with him, but it's hard to keep positive. Lots of love xx

@jennymarie13 I'm so sorry to read your story and that you find yourself here. It's utterly, utterly shit.

I went to dr S earlier this year after 4 losses - 2 chemical and 2 miscarriages, one of which was partial molar. He was recommended to me by a friend, and after much research we decided to take the plunge and go.

I've been very fortunate in that I got pregnant first cycle with him, and so far my pregnancy has progressed smoothly - treatment stopped at 16w and I'm now almost 32. I won't be able to breathe or believe it until the baby is actually safely here however!

My understanding is that his tests for nk cells (via blood) are different from the uterus nk cell testing. My results showed that I didn't have a high / abnormal number of NK cells but that mine were overactive / too aggressive when I was pregnant. I could be wrong, but I think the uterus nk cells test might only test for the number of nk cells, and now how they react to pregnancy.

My personal experience of him is that he's quite abrupt, doesn't exactly have a lovely bedside manner, and can make you feel like just another case who he rushes through his clinic. However; he obviously knows what he's doing and the rest of the staff are excellent and will respond to questions via email etc or when you're there. You can choose to decline elements of his treatment which could make it less expensive. My friend had a successful pregnancy with him despite declining the intralipid infusions, which are very pricey. X

Hey, newbie here soaking up all your knowledge. All very relatable having had 4 losses myself.

Have any of you tried hydroxy without intralipids? Or know of anyone having success on hydroxy alone?

Thank you

@Emmerina welcome, sorry to hear you've been having a tough time too. Yes I did. After a few early losses I was prescribed hydroxy and took low dose aspirin and my next pregnancy stuck perfectly (until an unrelated infection caused the loss at 16 weeks). It felt like a miracle treatment to me at the time as it really did work. So if you are reasonably young and not in a huge hurry it could be worth trying first before the adding the huge expense of intralipids x

@StillTrying10000 sorry for your losses, so sad about your 16week loss. I am early 30s and scared about the pred/intralipid route, just deciding which way to go. Thanks for your reply, you ladies are all amazing

@Emmerina great you are getting lots of info and asking questions to make an informed decision you are comfortable with. HCQ has certainly worked by itself for lots of women. Do you have any questions about pred or intralipids you want to know more about?

Hi everyone.

Apologies for jumping in. Wondered if I could ask some advice?

I’m with Dr Gorgy. I’m fortunate enough to be blessed with two beautiful DS after immune treatment (and a single cycle of IVF). I’m now trying naturally for a third DS.

Are any clinics doing Humira for immunes? I ask because I’ve been on HCQ and intralipids for three months and my TNF-a has risen from 37.5 to 46.9. Last time, I needed four shots of Humira and multiple IVIGs to bring the numbers (and my unknown symptomatic disease) under control.

@Londonwriter congratulations on your little ones, lovely to hear positive stories. I'm with Dr S on numerous treatments but had never heard of Humira, however they do refer to them on their website www.crpclinic.co.uk/wp-content/uploads/2020/06/PDF-6-Humira.pdf

Hi everyone, I’m not exactly new here I’ve been reading the ‘pred thread’ off and on for about 5 years… 🤦‍♀️ But it’s helped me through years of trying and waiting and in particular the awful period during lockdown when the meds were restricted and/or on hold. So I finally wanted to pop on and be a real person. In total I’ve had 9 pregnancies. Three mc before I went for investigation under Dr S and was found to have elevated antibodies (not NK cells), and then I had my daughter 4.5 years ago. For that I went on the whole Prednisolone protocol and we made it to her safe arrival.

Since having my daughter we suffered another mc in 2019 after which I got my bloods done again and found that I had now developed Killer Cells. I was put back on the same protocol but not long after covid struck, so I was put on hydroxy with no access to prednisolone and then it was made available later to me only in a half dose of prednisolone. As a result (I think) our subsequent attempts failed during covid, we had a mc in late 2020 and then lost twins in early 2021, which really floored me and made me question continuing. Not long after that the restrictions that had affected me for the use of prednisolone were lifted and I was allowed to have the full 25mg dose.

Fast forward to Sep 2021, I had a v early mc and then… by some miracle I got a weak positive test on the cheapie pregnancy test at 4dpo two months later. I had been extremely ill with cold after cold after my daughter had started school and was ill at the time with laryngitis 😩 and as a result I wasn’t even on prednisolone that month as I was so ill. But it looks like being so very poorly, presumably lowered my immune system the same amount or even lower than Prednisolone usually did. Obviously as soon as I felt a bit better I started back in the prednisolone and have (so far) managed to stay pregnant. I’ve been so very paranoid this whole time, I’ve had 4 early scans as frankly I’ve been in disbelief and so far all my scans have come up with things on track. I’m still a whole week away from my 12 week scan but have already made it to the booking in appointment which felt like a dream at the time. I guess the point is, I genuinely had lost a bit of faith in my own body, the science and the process.. and somehow it all came together and surprised me.

I know I’m not out of the woods but I saw a number of wonderful strong and inspiring women on this thread who kept me going when I was at my lowest. Without even knowing it, I wonder how many others have just read the thread for support for years and not taken part like me.

Either way I just wanted to say Hi and I wish you all the best of luck. I’m also wondering if there is anyone at the same point as I am right now looking to start weaning off the meds soon? I’m desperate to get off the cyclogest which is really messing with my tummy this time around and just counting down the days. Lots of love and luck to you all! xx

Hi all I hope you don't mind me joining this thread. I'm under Dr S after 4 losses. I've been diagnosed with high TNF alpha (my result was 55.4). I've been prescribed Humira injections to bring this down. I also have high "activation markers of natural killer cells" (not really sure what that means) but going forward I've been told I'll need prednisolone and intralipids. Does anyone have any experience of taking Hamira injections? And how long/ how many injections did it take for your TNF alpha level to come down? X

@WillowTree0721 I had to take two and it's not as bad as I imagined. I am petrified of needles and I found it really hard to take them, but it was over quickly and it didn't really hurt.

Thankyou @SunDance21 for replying. That's good you found them ok in the end and only needed 2. I've had the first injection and I'm due my second one this week. He seemed to think 2 was enough to lower the level so 🤞🏻 it is xx

@VenusStarr how are you doing?

@Lozfish I was thinking about you too - how's things with you?

Lots of love to all. Hope everyone is doing well and keeping positive xxx

Thank you for checking in @myrainbowjourney I'm not too good at the moment. Still waiting for our baby's cytogenetic results, I chased last week (8 weeks) but they said nothing yet. The longer it goes on, the more I'm worried about us getting no results / answers.

We had a review with our ivf clinic yesterday and I just feel really flat. I feel like they think we're a hopeless case. He was talking about surrogacy 😢 we've already decided that isn't for us. He did admit that recurrent losses isn't his area of expertise and he didn't know what to suggest other than pgs testing. Which we were expecting anyway. I'm still unconvinced that chromosome abnormalities is our issue and he agreed. But still said we should embryo bank and test. I think we need to know what's going on with my lining at 6 weeks, as I think it's that.

I know we just need to wait for the results and speak to Dr Shehata but I don't feel hopeful right now.

How are you? ❤️

Lots of love to everyone xx

Oh @VenusStarr I'm so sorry you are feeling that way. It's totally understandable that you would be, this journey is rough!

I'm surprised your clinic are suggesting surrogacy when I'm sure there are other options to consider first.

Can you speak to Mr S before the results come in? I guess it's worth waiting now as the results are probably not far away. I think and hope he will have a plan for you, and you will have your rainbow ❤️. I know I can't say anything to bring your hope back right now, but I'll be hopeful for you. Allow yourself to feel all the emotions because when he comes back with his plan, you'll have processed them all and be ready to go all in xxx

I'm fine thank you. I have my follicle tracking and intralipids later on. I feel like I'll have a good response this time, which is making the wait more bearable. I'll deal with the reality later 😂. My GP suddenly seems to have woken up and wants to start a fertility referral. I didn't really want to two alongside each other as it's a bit conflicting, and I don't actually know if I'd ever use the nhs, but it's keeping me distracted and also has stopped me thinking my chances end after this 6 cycle program.

Fingers crossed I won't need it 🤞🏼🤞🏼 xxx

@VenusStarr sorry it's been so miserable for you. Do you have any embryo's in the freezer or would you have to collect more to test them. I agree that it certainly sounds like there's something more going on but also I've found it interesting to find that of my 8 eggs that fertilised and got to day 5, only 4 were genetically good. So I had a 50% chance of a genetic issue on top of everything else I have going on. x

I didn't have a good response - one dominant follicle on my tubeless side. Spent about 20 minutes in the consultation room in tears. I feel so hopeless.

This is all so rubbish 😢😢

@myrainbowjourney Oww no I'm so sorry. Especially as you were feeling so hopeful this time. Did they say if there was anything more they can do? I hope you aren't in too dark a place now. Sending you hugs.
We're all unique and maybe you don't want to hear this but I had a really poor response on my first 2 cycles and then without changing a thing had a great response on my third. I have no idea why it was so different the 3rd time. I did 3 cycles without a break back to back which a lot of clinics don't allow but I think it played a part, almost like the drugs built up over time. I hope they figure something out for you xxxxx

@StillTrying10000 thank you ❤️
This will be my 5th go. I had similar, my 3rd response was the best but the 4th and 5th have been one follicle. Obviously doesn't help having one tube as I may potentially entirely miss this cycle as a chance.
They have actually increased my dose for the last try, and told me I have to book in with Mr S for my next appointment.

I almost refused intralipids - what's the point!? But she said there is a (small) chance it could work and at this stage, I feel like I can't risk it.

I feel really down. I feel stupid for being hopeful and don't think I can ever allow myself hope again as this fall back down is heartbreaking.

Thank you for your message. Fingers crossed their next steps are successful ones 🤞🏼🤞🏼 xxxxx