Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

Fingers crossed for good luck Karryk
X

Thanks Anna :) x

Just to say my update is not a positive one, the baby is way too small for the weeks and days, there was a heartbeat, but I am sort of giving up it is the scenario from last time, there would have to be a miracle for this baby to grow and catch up with the dates. Having a re-scan soon to see if there is any change.

Karryk good new on ur ovarian reserve and good luck for this cycle, fmy fingers are crossed for you.

Anna did you have the Lister appointment/how did go?

Four leaf dis you manage to escape trips to Epsom? Are you going to go with the London clinic?

Cartoon you are nearly off the steroids-sounds great, I hope your appointment went well on Monday

tumtimes that's good you are sleeping better, the steroids do have some annoying side effects

Seeking I see there are lots of horrible GPs like mine- good for you for standing up for your self and glad the GP got things sorted for you in the end

Casiopeia I am sorry to read this news. How small is the baby? If there is a heart beat it must be around 6 weeks at least? Which means it could catch up? I am keeping everything crossed xxx

What did Mr S say? When will your next scan be? Are you on any blood thinners? xx

Caseopeia, I'm so sorry to hear that the dates are measuring behind. How many weeks do you think you should be and how many are you measuring? Was it a good strong heartbeat?! I'm really keeping everything crossed for you.

Sorry to all you lovely ladies that I haven't been updating on here the last week or so. Has been a really stressful one for me as I managed to convince myself that I had lost this baby after having lower back pain, cramps and spotting. Went to walk in EPU yesterday at St Thomas' to have a scan. Fortunately baby still had a heartbeat and they couldn't find any cause for the bleeding. Have been signed off work for a week so that I can rest up and pull myself tog. The stress as each week goes by is very difficult to cope with. I'm 9 weeks today and have another scan next thur.

I also went to my Gp and she was very lovely and handed over a prescription for the steroids and progesterone. Which means I can stop going to Epsom and just get scanned more locally. I'm a bit nervous about emailing dr S to say that I will no longer be going to him. Which is silly as its not like my protocol is changing. I guess it's just a by of a comfort blanket to know that you have a dr that is treating you! But after the stress of this last week I also realise that Epsom is not somewhere that I would go to in an emergency and that my local Epu is more important.

Sorry it's a bit of a ramble today. Going to catch up with everyone's posts and will hopefully be a bit more of a support for you all xxx

Sorry you're going through all this again caseopia- limbo is the worst. I really hope little one catches up and things work themselves out. Sending you lots of positivity.

Fourleaf - glad your worries turned into nothing more serious. Just keep strong, each day that passes your baby gets stronger and stronger. Fantastic that you have such a supportive GP. I really hope that sometime soon the NHS wakes up and realises how easy it can be to deal with immune issues and that it's not just a big load of cods wallop!

Hi to everyone else.
Drttc, snoopy - how you doing?? Xx

Ah Fourleaf that is BRILLO news! So happy that all was ok with your tiny! Don't worry about emailing Mr S about your new doctor plans. I completely think you are doing the right thing and he will agree I am sure.

Meant to say yesterday Karryk that's brilliant about your egg reserve! So cool and one of the major battles over come! Nice one.

Hi casiopeia how did it go today? I am thinking of you x

Thanks Tumtimes :) it was a weight off my mind for sure! Now just sit and wait to see if anything happens in this cycle :)

Thinking positive thoughts for you casiopeia...and Billy too x

Fourleaf: so glad the baby is ok, the stress once pregnant can be so intense, especially when you get symptoms. Thanks for the PM re protocols I really appreciate it.

Casiopeia: I am so sorry to hear about your scan. But fingers crossed for a fast catch up grow. It's hard when it's happened before and sometimes the hope can be a killer. Hope it catches up, it's good that it has a heart beat. Xxxx

Karryk: good news re ovarian reserve. I have not dared do mine.

I saw my GP this week who said she would prescribe Dr S protocol if it's recommended by a specialist- which was a huge relief.
I am waiting to test at the weekend. I have not yet got results back (on NHS) from Epsom- so not great if preg. I was just so miserable after last miscarriage that at the time it seemed like a good idea to have sex- pisty ovulation hormones! I have decided though if not conceived then it's a couple of months break for us as my mental health has been so poor and I will then have my results. If preg will have to just carry on with coventry steroid/clexane/progesterone protocol and hope it will pull through.

So so sorry about your scan Casiopeia :( How are you feeling? I hope you've gotten some answers.

Fourleaf and KarryK congratulations are your good news. Here's to more good news in the coming months :)

Hi Seeking! How are things with you? Feeling alright? I'm well! Almost 32 weeks now. Feeling very big and definitely growing everyday! Can't wait to have him here safely. Still worry so much!

Hello everyone.

Sorry I haven't been around much. We had established a nice little routine going but then the little jelly fish had issues with tongue tie and now has a bit of reflux so it's gone to pot haha

I'm sad to see so many new faces. I'm glad we all have each other to talk to but I'm sorry there are so many women that have had to go through the experience.

casiopeia I'm so sorry about your scan. Have you got a second one booked?

billy I've been thinking about you, how are you feeling?

drttc 32 weeks is amazing, your little boy is nearly here!

Hi Snoopy! Sorry to hear about the tongue tie and reflux... Have you been able to improve things? If so, how? Trying to absorb as much info as possible! So happy to hear you talking mummy things :)

According to my mum tongue tie is hereditary in the girls in our family, she had it, grandma had it and in rural Spain they just cut it at birth so they were fine. I had to have mine snipped at three months old under GA because of the waiting lists on the NHS. Anyway, I had no idea about tongue tie but they spotted it on the postnatal ward but said it wasn't an issue because she had wet nappies. My mum said get another opinion because it was getting harder to feed her. The health visitor said that would take three appointments and being put on a list that could take a couple of months so we went private. it's a good thing we did as she couldn't even get her little tongue over her gums. It was snipped (I had to hold her little head still) and feeding is so much better. I'm really pissed off that once again the NHS just couldn't really be bothered. If we hadn't gone private I would have given up breastfeeding within a week because she just couldn't latch on.

Anyway rant over

With the reflux we've got her Moses mattress on a slight incline, we try to keep her upright after feeds and well winded. She still brings milk up all over me despite bibs and muslins all over the place but she's putting on weight so she must be getting some nourishment. The GP said they don't automatically prescribe gaviscon now because it can cause constipation, I'm not sure how true that is but we're persevering for now.

Hello All.

Just jumping back on thread to ask a few things before my appointment with Dr S on Saturday. We will be getting the results from the immune and thrombolia blood tests (which cost a fortune). I suspect he will say something like NK cells are high.

So if there is an NK/immune problem and the treatment plan is steroids, a drip, scans etc, what kinds of total costs are we looking at? A few thousand? Tens of thousands? I have no idea what to expect.

Hi Marmite, good luck for your appointment on Saturday.

Tuns out that I have high NKs when pg so was put on his complex NK cells plan for ttc- which is pred for 10 days from ovulation, pregnancy test and if BFP then continue with the pred and get an intralipid infusion.
Basically the cost of the meds is around £50 about 28 pills of pred of 25mcg each, then the follow us consultation with a scan is £210 (which he will want to schedule on a bi-monthly basis in order to prescribe you the meds) and when you do get pg on his plan he will schedule scans every 2 weeks until you're 12 weeks (5 x 210) and then more infrequent scans after the 12 week mark. He is also a big proponent of the Harmony test (which is another £400-£500) and this is usually scheduled between week 11-13.

Depending on how you respond to the meds according to your test results (if it's intralipids you will be put on it's about £300 a pop and IVIG is between £1500-£2000 a pop) you will need to have those at BFP, 8 and 12 weeks.

So it does mount up significantly and it largely varies on what you need to have and whether your GP can prescribe it. He may also suggest you to take Heparin if it turns out that you have a blood clotting issue and that it quite expensive (someone mentioned something along the lines of about £5 a shot and they are taken daily). But if you can get your GP or your local RMC/EPU to prescribe the meds in the plan, then you may not need to have to pay for all of it.

Hope all goes well xx

Thanks anna, that's all really useful info. I'm terrified of spending all those thousands on this treatment and then going through another 20 week loss (already had 2!) It's all such a huge gamble. I'll see what his plan is on Saturday.

Hi Marmiteontoast76
I am truly sorry to hear about your two late losses; I have been through one missed 20 week miscarriage and going through another late one- or worse- has always been my worse fear.
Has Dr S given you the spiel about his patients with late losses being the most difficult to treat? That was the first thing he said to me during our first consultation which left me slightly shell shocked....

Incidentally, when we saw Dr Thum at the Lister a few weeks ago, he said that he had a patient who had one 25 week loss, followed by one at 23 weeks and a third one at 21 weeks (!!!) I honestly don't know how this woman managed to sustain her sanity and persist. Apparently, she was put on pred, heparin, aspirin, progesterone and IVIG infusions during her first 12 weeks and managed to have a healthy baby....It's stories like this that make my jaw drop in awe of some women's pure resilience and perseverance.

Good luck again, keep us posted about what he says- are you seeing him privately? xxx

Hi marmite, I can see you anxiety re paying out without the guarantees of not going through what you have been through. So sorry for those late losses, i can't imagine what that's like and so much respect for getting back out there with TTC. I think if you can get GP to prescribe that would help keep costs down (depends on GP) and then you not so tied in to- you have to turn up to get meds. Also Asda pharmacy do cost price fertility meds. Predisolone only costs about £5. It's the more complex drugs that are costly. Not sure there is much of a way round that. I hope you get some satisfaction from your appointment though and ways forward.
Annaaif: did you find Dr thum good- did he add any clarification in your situation ? Different treatment ?
Good luck for sat x x

Thanks Anna and See33. Yes Dr S did give me the talk about late losses being harder to treat and that scares me. Yep seeing him privately.

Evening all....Hello marmite - sorry to hear of your losses fingers crossed for a happy ending x

Funnily enough I'm sure Mr S told me that early losses were his least preferred....how bizarre maybe he got mixed up that day

Due to test tomorrow but it's my birthday so I'm saving it for Friday! Had strange watery brown discharge on and off for a few days plus slightly heavier boobs...nothing else though

Rightio...off to bed...a day of treats and distraction tomorrow xx

Hi again, thank you for your messages and caring, seeking, see33, soopy, drttc, anna, Tumtimes, the story did not end well, 3 days after the first scan there was no more heart beat and baby stopped growing altogether, so was size of 6 weeks at just 8 weeks, when heartbeat stopped, this is the exact same scenario from previous pregnancy when I was not on steroids, intralipids or anything really. I had my surgery and recovering now, but still gutted and incredulous really, we put all our hopes into this protocol as I see it helps so many girls to the happy ending. Now waiting for results from genetics and other testing on the baby to see if this was a one-off chromosomal mishap in which case no amount of medication could have prevented it, or if the tests shows as all clear, I have no clue what should the next step be and where shall we look.

I googled on surrogacy like crazy, but it is just too complicated, let alone costly and legally wobbly. DH googled on sperm DNA fragmentation- have you heard of this- is this a real thing or just a money- making trap? If anyone had experience/ information, I'd appreciate it.

karryk fingers crossed for good news on your birthday- let us know x

fourleaf great news, I am so glad for you, these times are so stressful and their tests our sanity to the limit, I hope all goes well for you from here and good your GP can prescribe you the meds so you dont need to endure the long commute x

Btw, dr Shehata is back at Harley street from mid August if this helps anyone

HI ladies - just catching up on the thread.

Casio I have just messaged you and as you know I am so gutted you are going through this but I feel sure you will get there. How soon till your results are back?

hi Marmite I'm so sorry to read you have had two late losses - that's awful.
In my opinion, Its likely you will be on clexane for sure (regardless of thrombolia results) as you have had the late losses (you would want a prophylactic dose 20or 40mg as a JUST in case) - but you may also be able to combine this prescription with the NHS. Certainly for the basic bits like clexane (I think that should be a given based on your history), cyclogest, &baby asprin. They may even go to the prednisolone as well.

So I think the main costs you are going to be looking at are the basic meds, the Intrapalids (if needed) and the actual appointments and scans with MR S. Still mounts up though I can appreciate.

Again though the NHS will defo scan you more regularly should you need it which could help with the costs.

Karryk have a lovely birthday! Fingers crossed for testing.

Hi to everyone else x

Hi casiopeia

I am very sorry to hear about your last loss; hope you are recovering well from your MVA and that you may get some answers from the genetic testing. As you say, if it's chromosomal, no amount of meds in the world would have made a difference- which may be a relief from one end (but is also difficult to deal with as well). When are you getting your results? Did you organise the testing through S incidentally?
I went to the Lister recently and Dr Thum spoke to us about sperm DNA fragmentation as an optional test we haven't yet done. He suggested it due to our latest 2 mc's which were around 8-9 weeks each and after a seen heartbeat and because a previous sperm analysis for my husband showed good sperm count/motility but a slightly high percentage of abnormalities in the sperm morphology.
For the time being we've done blood karyotyping tests and waiting for the results in mid July. But in his point of view, chromosomal abnormalities in the fetus may also result from the sperm, hence why the DNA fragmentation test comes into play which can detect whether there are any issues there. He didn't necessarily say that it will give us answers, he suggested it as another test we could try to do which may shed some light as to whether there is any genetic issue with DH's sperm (but the likelihood of that showing something is relatively low as we have one living child and one pg that has gone to 20 weeks- hence unlikely to have been chromosomal)
It is a highly expensive test (about £650 at the Lister) and he did point this out to us.

Good luck with the testing Karryk and happiest of birthdays!Hope you treat yourself with lots of yummy stuff today

Sorry things didn't work out caseopia. Glad you're recovering well. The chromosome tests are like a double edged sword - if it's a position be for an anomaly you then worth if it's something wrong with you, if it's not you have the worry of the treatment working next time. My last loss was a very weird and rare chromosome issue - DH and I had karotype tests to make sure we weren't carriers of a faulty pair- thankfully not. Thing like Down's and Turners are fairly common and are more likely to just be a sad blip. For now just concentrate on you and look after yourself.

Karry - Dr S told me that both early (before 6weeks) and late are hard to treat. Different reasons but both can be difficult.
Marmite- the cost will vary greatly depending on diagnosis and how long it takes you to fall of again. I managed to get a prescription from Louise for meds after two months without having to see DrS. We eventually went back after 6 to discuss further treatment.
Like others have said, try to to get your GP to prescribe as much as possible. Mine did everything except Pred and would I'm prescribe cyclogest until 12 weeks.

Snoopy - lovely to hear from you. Sorry you've had to give tie issues. You'd think with how 'pro breast feeding' the NHS is they'd be a lot hotter on getting tongue tied sorted asap. I know so many people who gave up because of it.

Hope you're ok Drttc - not long for you now! Time is whizzing by!'