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

@Daffodil21 yes she said people kept writing about her having surgery but she was just on steroids! Sounds like you are taking the right approach.

@treesall hope all is going well. I have my final appointment with Dr. S this week and due to come off meds at the end of the week so I'm feeling a bit nervous - I don't understand how it will all be ok, but hopefully Dr. S can answer my questions.

Xx

@Lozfish I was petrified of coming off the steroids, but it can be ok! Look after yourself xx

@Lozfish I was a bit shocked when I asked dr s to explain to my why it's safe to come off hydroxychloroquine at 16 weeks. He basically sad they had no idea when was really safe, he just made that up on the basis the placenta is fully formed and that timing seemed to work for pred, so he did the same but that he thought it was probably safe to stop a few weeks sooner!

I've just started the second phase and the medication has given me a constant headache. Has anyone else had this? Do I just need to drink more water? 😂

I hope everyone is well.

I have a question on having vaccines (flu and COVID booster) whilst being on prednisolone. I have to admit I was in two minds whether I wanted to have the booster whilst pregnant but I had decided I would probably do so at 12 weeks (a week and a half away). I had asked Dr S what's his thoughts were on getting the booster and timing and he just said to get it if offered it. I hadn't thought at the time to ask about having it whilst on immune suppressants so I just emailed the clinic and the nurse said I should wait two weeks after finishing the pred to have the booster and the flue vaccine. I was just wondering what others have been told?

@SunDance21 not sure what meds you are on but I got really bad headaches when I was taking Buserelin at the start of my IVF cycle and drinking more certainly helped me x

Hi everyone, I’ve been following this thread for a while now and am very grateful to have found it. It’s so hard to navigate all the emotions around this. I’ve had 5 early miscarriages / chemical pregnancies over the past 2.5 years, the most recent was on Dr Shehata’s plan.

Last week after I started bleeding for the 5th, I really felt ok. Dusted myself off and got on with things, but this week I feel so differently. I’m worried that we won’t be able to have children and really trying to understand why it keeps happening. Needless to say, I can’t find any concrete rationale. Dr S has put me on the complex plan for high NK cells, but just 15mg of Pred as I am quite slight. We have a follow up with him on Monday to see what the plan is moving forward. Just so emotionally tiring. I’m sorry to all the others who’ve recently been through something similar

@OnwardsIGuess sending love. Be kind to yourself. I had 5 miscarriages (one of which whilst under dr. S.). I was then lucky and had a daughter. . Keeping everything crossed for you xx

@RosieLeeD yes I was told the same. The covid and flu jabs work by triggering your own immune response and the pred suppresses this. It's still worth getting them but if you are only a few weeks away from being off it it might be worth waiting. Two weeks is the recommended time for them to get out of your system.

Is anyone else on this thread under Dr S and continuing to have miscarriages? I'm wondering if the treatment just isn't working for me or if it's more common than I realise. It's hard to not feel like it's working for everyone but me when there's always women there who are having successful treatments.

@StillTrying10000 there are definitely women on here who have had miscarriages under his treatment.

I think a lot of it is luck. He said to me that 80% of people who go to him have a successful pregnancy first time. That's still 20% who don't. That's 1 in 5. It's a lot of people. You're absolutely not alone ❤️

@SunDance21 thank you. It's odd as it's reassuring to me that it works for so many but can leave me feeling left behind when I've had so many losses now and there are no more drugs left to add to my plan. I wonder if anyone ever gets to a point where he tells them to stop trying. I've spent over £35k now so the debt we're in is ridiculous but I can't ever imagine giving up. It's all I've ever wanted in life. I'm just going to keep wishing this is the month it sticks for good x

I completely understand. We've just moved onto phase 2, and we were recommended to start on everything to begin with, but I just can't justify the cost 😢

We're doing everything apart from intrepids. I'm praying the first time sticks so I don't regret the decision...

Hi Ladies,

I hope you don’t mind me joining this thread, I’ve read through all your posts in the last couple of days. So sorry that you are all going through such a hard time, it is so isolating. Congratulations to those of you who have since managed to conceive on Mr S plan, really reassuring to here.

My husband and I are currently debating whether or not to have a consultation with Mr S in January. We can afford it if we are lucky and get pregnant within the first couple of cycles but thereafter I’m not sure we could continue without requiring financial help. I hope you don’t mind me asking but have most of you been successful within the first couple of times with Mr S?

I find his online price list so confusing when trying to tally up how much we might end up spending, however I know it is different for everyone on his plans. We live in Aberdeen, N.E. Scotland too so the travelling alone is a lot.

Has anyone had experience of St Mary’s in Manchester also? I believe they do a lot more online consultations so could be an easier option for us.

I appreciate you reading my ramblings, as I’m sure you all didn’t, we didn’t expect to find ourselves in this situation so it’s all so new & hard to get your head around. The differing views are also a lot to take in aren’t they!

Love to all x

@speake sorry you find yourself in this situation. Weirdly even though I'm yet to have success with Dr S I would still recommend him. I do think what he does works for a lot of people. I wish I had actually gone to him sooner when my ovarian reserve was higher rather than wasting time with the NHS where they can only offer very few tests and treatments. We spent about £3000 for the initial tests and then it can be about £500 a month for medications. See if they will do appointments over zoom as I know they don't recommend it but Dr S actually had to isolate a few times over the last year and I found the zoom appointments just as good. The only challenge will be if they put you on intralipids infusions that's every 4 weeks so a lot of travel and you have to do before you conceive so has been a lot of wasted time and money for me as I didn't conceive for months. I wonder if there's a place they can partner with up there to give them to you. PM me if you have any more specific questions. Good luck what ever you decide xxx

Hi guys,

Sorry to read about all of your losses. Been watching this thread for a while. Just had my second nk cells biopsy with Professor Brosens at Warwickshire and Coventry and waiting for the results. It seems most people on here have seen Dr S, any experiences with Professor Brosens treatment?

I've had 2 losses this year, one at 5 weeks and another mmc at 9 weeks. Just thought whilst the nhs wouldn't do anything, we'd give nk cells testing a go. Been thinking we might go for private tests if we're not pregnant in a few months or we have another loss. The nhs waiting lists take too long and I'm 32 atm.

Hoping we can find some sort of answers soon!

@chasingtherainbow1 sorry for your losses. I don't know the other doctor but I just wanted to say I think it's a great idea to get tested sooner rather than later. I was warned off private as the costs escalate, and they can, but I felt I wasted time doing the tests and treatments the NHS offered as they are so minimal compared to what you get private. It's all so painful doing anything we can to get answers quickly I think is really important. Also you may find the doctors take a long time to get appointments at so may be worth trying to book them now, you can always keep trying in the meantime. Good luck x

@StillTrying10000 thank you for your reply. Yeah they are my thoughts exactly. I don't want to have to wait another 6 months of trying or having a 3rd miscarriage and then however long it will take to be referred and get the tests. Think I might give myself until March as that will mark a year since our first loss.

I need to start looking into the price of private costs. It seems when you look online no companies can even give you a rough figure without an appointment. Like I just want a real general figure so I know if it's possible for us or not.

The nhs is so underfunded in this area and it's so sad the pain we all have to go through. It's pain like I've never known. Wishing us all the luck in the new year!

I can't read any private messages because I created my account on the app with my Apple ID and it doesn't let you use this to log in on the website. Thanks though x

@chasingtherainbow1

Costs for an initial consultation are £350. For me my blood tests came to about £3,000!!!!! But if you have already had some of these on the NHS then they can be cheaper as they will use these results rather than making you redo them.

After that it depends on your results. It could be £500 a month, equally could be £50.

I hope this helps x

Has anyone had EMMA & ALICE tests at CRP? If yes, how long did it take you to get the results? I'm just wondering if there's any chance to get the results in time to start a frozen IVF transfer the following month, depending on the results and required treatment of course.

@SunDance21 thanks for the advice, that roughly the figure I had.

Got my first nk cells biopsy back and mine are high borderline very higher. Still waiting on the see one biopsy results before speaking with the professor.

Anyone want to share any stories of treatment or success after high nk cells results. Feeing a bit strange about it. Part of me feels positive as we know what might be wrong now but the other part of me feels like, oh crap there is an issue and it's not just bad luck. Dunno how to take it.

I'm also aware of how controversial this is and that some medics don't even believe nk cells has a bearing on miscarriage. It's all so confusing and scary

Hi everyone, I’m hoping this is still live. Am a completely new user and would appreciate any advice on how to find this thread to keep using it as I’ve no idea how to use Mnet!! Am on the Dr S super ov/ NKC protocol and keen to chat to others on it. Wishing you all good news and let’s hope all our Christmas wishes come true.
Belle x

Ps are you all using the app?? Thanks

Welcome @BelleB84 I've also had that treatment, it was unsuccessful for me so far so I have recently been undergoing IVF through CRP, happy to answer any questions you have here or via direct message. I flip between the app and website.

@StillTrying10000 thank you. I’m sorry to hear that but best of luck with the IVF. We will be doing the same thing so I’ll look out for your posts - thank you and I hope it’s going really well.
I’m at the 2 week wait drugs stage and having awful migraines. Not sure if it’s the drugs, a cold (no other symptoms) or Covid so doing lat flows. Did anyone else get the awful headaches? I’m on omeprazole, pred, cyclogest. Thanks all