Immune/ NK cells - Pred threat 27

[LaurenAB94]

@Bambii @Daffodil21 @Eeviee @Everhopeful35 @farfromperfect82 @Eeviee @Everhopeful35 @Hazlet2 @farfromperfect82 @HoldingOn2Hope @Jellystar23 @KtAgs @Lalaifa @LookingforAnswers86 @Marabouchoc @LRL12 @MrsMargot @Naticle @NessyT91 @NessyT91 @NICK7nick7 @rainwillmaketheflowersgrow @Rebecca9876 @Sophfr17 @Tinpo @VenusStarr @Wheresmyrainbow @Whyisthistakingsolong

@VenusStarr it's so frustrating isnt it. Just when you think your body is playing ball it's like erm no I'm not! Is it your IVF medication you will be starting? I've got everything crossed aunt flo comes on properly for you.

I'm off on the long journey down to Epsom tomorrow for our results. Just me and my dad this time (I have a massive fear of driving on motorways so its taxi of dad) as my husband had his first covid19 vaccine and felt unwell since so a long car journey wouldn't be wise. I've no doubt when I get the results I will be asking for advice on here. It's so good to have this thread for support. I've found reading through posts very helpful 😊 xx

Good luck tomorrow @Rainbowdreams1983

@treesall thank you. Hoping the weather is a bit nicer down there so we can have some lunch, its poured with rain more or less none stop here the past 2 days.

I saw your post recently about whether you need to wait to try if under Dr S. How are you getting on? Are you under his care too? Apologies if you have posted this previously. I only recently joined the group and not read all posts.

Xx

@Rainbowdreams1983 I have my first appt in a couple of weeks so not under his care yet, I was just wondering what may lie ahead really. It'll be another month before I have my results appt so I was just thinking ahead in terms of whether that might mean trying again soon or not for a few months.

I live pretty close to Epsom and I'm afraid the weather has been pretty pants here too! Super windy!

@treesall we are currently en route to Epsom. My appointment is at 1.30pm. That's a shame about the weather!

I bet you cant wait for your appointments. They will soon be here. I will let you know what Dr S says today 😊

Xx

Hey @Rainbowdreams1983 and @treesall - I'm under the care of Dr S too. Really hope your appointment goes ok @Rainbowdreams1983. I found it really rushed as he just gives you a 'treatment plan' and doesn't really explain/go through it in detail. I found it all really quite overwhelming but kicking myself that I didn't just push back and ask him to explain! Having said that, once you've had time to read and digest it, the nurses are great and respond really quickly to any queries. I have my first intralipid infusion tomorrow in Epsom that I'm freaking out about a bit but I'm sure it's fine! (I'm on the complex plan with Hydroxychloroquine and Cyclogest & intralipids at ovulation.

We live in Bristol so bit of a trek but we actually quite like the little night away!! 😃

@treesall Dr S asks you not to try beforehand as his treatment plan is pre-conception and tailored to your needs. Feels like a long wait as I first contacted him in March and just started trying! Feels great having the ability to just contact someone so quickly though & whilst it feels like a lot of drugs etc, I feel really looked after which is a stark contrast to my NHS consultant who just said keep trying! Dr S said the same thing would have happened again & again (I have really high & really active NK cells apparently).

Feel free to ask questions about everything, I'm happy to share xx

@Rainbowdreams1983 wow that must be a long journey - where are you travelling from? Hope the appt goes well today.

@Tumby gosh that's good to know the nurses etc are responsive. Given it costs so much you hope they will explain everything fully etc!

I def won't be trying until after he gives us the go ahead to. Still haven't had my cycle back after my last mc anyway and still haven't got a totally negative test (but nearly) 5 weeks after my MVA.

Annoyingly Dr S (or one of his team) would be who I'd see on the nhs anyway but the waitlist is very long so we are going privately. I'm very, very nervous - I normally avoid drugs as much as possible and here I am probably about to go down this highly medicated road! Really really nervous about all that but I won't get ahead of myself worrying until I've actually seen him abs had results.

These intripalid infusions seem very common! I need to read up on them. I hope yours goes ok tomorrow.

@Tumby we are on our way back from our appointment. I've also been put on the complex plan. My activation marker for NK cells is 1.78 which is borderline very high and NK cell cytotoxicity assay 22% which is high. We already know I have hashimoto's, my thyroid antibodies have increased. I've been prescribed intralipids any time before ovulation next cycle and then 4,8,12 and 16 weeks, cyclogest, asprin, vitamins and vit d. The only problem is I have a congenital heart defect and need to find out the results of my last Ecg, if I have a prolonged QT interval which I have a feeling I do I will have to take prednisone. Waiting for a call from my GP to confirm. On your advice I asked lots of questions and feel happy with the plan. Just wish the journey wasnt so long but hopefully will all be worth it 🤞. I will be thinking of you tomorrow at your appointment. How long does it take from Bristol to the clinic?

@treesall we are in Staffordshire. I am very lucky to have my dad to take us down. I hope your cycle comes back soon, the wait after miscarriage is so hard. It is a worry about the medications but I feel happy I'm in good hands 😊

@Tumby the intralipids are nothing to worry about honestly, Emma is lovely they don’t hurt other then a bit of an achy arm grab a magazine before you go & you basically can just sit and chill for an hour.
Our plans are pretty much the same other then I had Intralipids from positive test rather then from ovulation. X

Hi @tumby and @treesall please could I ask what the intralipids are supposed to target?

Sadly they won’t offer intralipids here in Northern Ireland and I would have to travel to England or Dublin to try this or to even be tested for NK cells. I do have hasimotos too and other autoimmune things going on. Frustrating that N.I is so backward with fertility issues 😑 x

Sorry I meant to also ask @tumby @treesall are the consultations and NK tests expensive and is it all tested in one appointment or multiple? Thanks! X

Hi @NImama I am not the right person to help I'm afraid as I haven't had my appointments yet! I'm sure one of the other very helpful ladies here will help you though. Sorry it's all more difficult for you to access care, that must be very frustrating.

Thanks @treesall for your reply. Totally frustrating! We are so close geographically but so behind!

@NImama we had our initial appointment and all the tests were done that day (we didn't do sperm dna fragmentation) with my results appointment 2 weeks later. We paid about £2500 for the initial consultation and tests.

I'm in the Midlands too @Rainbowdreams1983 the journey down to Epsom hasn't been too bad during the lockdowns, but haven't been down recently. Your plan is similar to mine. I've taken prednisolone for the last couple of cycles and other than moonface, I've not had any problems. Hope your GP can confirm.

Hope you're getting on OK @Badlydrawngirly

I've had a really stressful week, started spotting early so have had uncertainty over when my period actually started. But I've been told by my ivf clinic we're good to get started on our cycle, so I'm officially starting today! 🙂

Hope everyone is well xx ❤️

@treesall I'm honestly the exact same with regards to taking medication. I previously wouldn't even take paracetamol! But I figured that I'm in really good hands. They monitor you as you go along & so far I've had really limited side effects with the Hydroxy & actually quite like the progesterone pessaries! (They help me not to be so moody!) I just figured after so many losses, it feels weirdly quite comforting to be having such much done as I know it's for a greater purpose. Try not to worry, as hard as that sounds! I didn't take my hydroxy for ages but all is good ☺️ the NHS just threw some progesterone at me at about 5 weeks into my previous pregnancies and I would lose them pretty soon after which is why I feel positive about Dr S being pre-conception.

Thank you @LRL12 my appointment is at 12pm so I'm sure I'll feel better after the first one. Good to know the nurse is nice though. X

@NImama I think the intralipids are supposed to calm down your immune system & prevent your body from seeing the early pregnancy as an imposter if you have high NK cells & especially if they're very active like mine! So sorry that they don't do tests in NI. The total bloods (not just for NK but for everything, including TB and Covid antibodies/Vit D/lupus etc was about £2,200. Seems a lot but this is the most expensive part. The treatment plan is monthly and he'll only test for what you haven't been tested for so if you have a good GP, may be worth getting tested for the standard bloods like Vit D/liver function/thyroid etc through them. I've heard of him being flexible in his treatment for other ladies that live far away but may be worth asking the clinic? My partner also had the Comet test but through an acupuncturist called Verity Allen. She's Bristol based but amazing & has ability to ask The Doctor's Laboratory (the same company Dr S uses) for tests.

@Rainbowdreams1983 how do you feel now that you have an answer? Really glad that you asked lots of questions! Hopefully you got everything you needed from the appointment. Sorry to hear about your heart problem, I'm sure that if you need to go on pred, that will be just as effective. We're pretty much on the exact same plan! I'll let you know how the intralipids go today, thank you. It takes about 3 hours door to door from Bristol but we stayed over last night to try to reduce some stress. (I was born in 1983 too!)

Hope everyone else is doing well xx

@VenusStarr where about in the Midlands are you? We are in Stoke on Trent in Staffordshire. The journey has been ok, just a long way and takes a full day doesnt it. I feel guilty about having so much time off with my role at work. I had a bit of moon face when I was on steroids last pregnancy and a very healthy appetite lol.

@Nlmama our initial consultation also cost about £2500 which was for all immune tests, the consultation and to check my AMH, thyroid and FBC, U&E. The treatment depends on the results. Intralipids are £350 time, scans including consultation I believe is about £225, other meds are anywhere from £25-£50 for a 3 months supply.

Xx

Another 1983er here! 👋

@Rainbowdreams1983 I'm in West Birmingham. I've done the trip in 2.5 hours but always leave at least 3 hours. I'm down there again next Thursday afternoon. Just realised that I've got to take my injection in the car on my way home 🤦🏻‍♀️ I can do them anytime between 5-7. Xx

@VenusStarr are you a 1983 baby too? Takes us about 3.5hours to get there with a toilet stop but we allow more time too in case of traffic delays. The traffic is always bad around Birmingham isnt it so we use the toll road at that point. I hope it goes well for you next week, is it for medication? Will someone be with you when you go or do you drive yourself? That's good you have a bit of a window to have your injection

Yeh, born in '83 🙂 I'm going down next week for intralipids before egg collection which should be sometime the following week 🤞 I'm probably going on my own, it depends if dh is working or not but he can't come in the the appointment anyway, it's always nice to have some company!
We're not far from the motorway. There's only been one time on the M25 I panicked that we'd be late. I was offered Harley Street for one appointment but I said I'd prefer Epsom, it's more straightforward to get to. X

Thanks @Tumby. I haven't tried any medication with my pregnancies, except in the last one where I tried aspirin from 5 weeks after reading up on it. My GP wasn't prepared to try anything and said I'd have to wait until I'd had the RMC appointment. When I got pregnant again she referred me to the EPU but they said nothing they could do until I'd had testing. I was so frustrated not to be able to try anything as I knew it'd end in mc and it did!

I'm really hoping we haven't screwed up. Last week we dtd and I didn't think about contraception because I still had a clearly positive pregnancy test, but I then had signs of ovulation about 48 hours later. It's highly unlikely I would get pregnant from that but I will be soooo mad with myself if I've managed that so soon before my dr s appt. I'd be gutted to have to postpone for goodness knows how long until I mc again! I still have a shadow line on tests following my MVA so I'm hoping the signs of ovulation weren't real. I am such an idiot! We haven't prevented pregnancy since I first fell pregnant in 2017 so I stupidly just failed to think about it!

Try not to panic @treesall when are you seeing Dr S? Hopefully with hcg in your system, it's your hormones settling. I understand the worry though and I'd hope he'd still be able to support you if you were pregnant xx

@VenusStarr both in the 83 club 😊. I turned 38 last week eugh. How are you feeling about IVF? Have the meds been ok? I wish I was brave enough to drive myself down but I would be a liability lol! Having company makes the journey go quicker too, my dad and I put the world to rights yesterday on the way down. The M25 can be a nightmare, luckily our appointments have been around 1pm so by that time traffic has reduced.

Is there always the option of having the intralipids in epsom? Do they do them every day of the week at any time? I agree it would be more difficult going to Harley street, I wouldnt fancy it either unless there was no other choice. Xx

@treesall I am so sorry you have so much worry. I have been in the same position as you before when we have had accidents or forgot to use anything, it's easy to forget as this journey is so overwhelming. It is my understanding you cannot ovulate whilst HCG is in your system, I may be wrong. Sending a massive hug xx

Good to be part of the 1983 club @VenusStarr and @Rainbowdreams1983 - I'm 38 in a couple of weeks! Agh!

@Treesall - you're definitely not an idiot!! It happens and it's all so complicated so try not to beat yourself up. Xx

@Tumby I have pretended this last birthday didn't happen! Oh to be 20 something and have more time to ttc! Have you got any plans for your birthday?

I'm ready to try a different approach to having a baby @Rainbowdreams1983 we've ttc for 6 months since finding out about my nk cells and being on the complex plan and had no luck. But with my first pregnancy it took us 16 cycles to conceive and it felt like that all over again, plus dealing with the grief, this feels right.

Just did my first injection and didn't feel a thing! I'm doing short protocol, so straight into stimulation meds.

I think they only do intralipids at Epsom. Dh is working next week, so I'll be on my own, but I don't mind.

Have you got anything nice planned for your birthday @Tumby? Mine is in August. I still feel like the 90s was 10 years ago! 😂