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

@JessL12 have everything crossed for you!!

Have been absolutely fine on the Hydroxi - felt my moods were a bit up and down for the first few weeks and stomach was a bit unsettled but both are now fine.

I'm more apprehensive about going on pred - I was on them for a few months in 2016 for a Crohn's flare-up and the side affects weren't nice.

Hi @JessL12 gentle congratulations to you! So nice to hear from others also at epsom. Have you had any side effects at all today from the double dose?
they have told me to do the same for the first 2 days. Are you local to epsom and having scans there?

xx

@Hayley220 Ive had no side effects so far, hoping it stays like this! when do you start your medication?

Yes I live local to Epsom so all my tests are at Epsom. I’m being monitored so have another appointment at 7 and 9 weeks to see how pregnancy is progressing and have my scan at 10 weeks to check for any abnormalities. Have a long way to go so trying to be calm 🤞🏻 xx

@SReyn It’s always nice to hear from someone who has been on the same medication. I’m glad your finding it ok and haven’t had any major side effects

Fingers crossed it doesn’t come to that 🤞🏻when have they said they will have to change your medication?

@JessL12 thats brilliant. Im actually an hour from Epsom but they did suggest I could have the same scans and tests there if I want which is good. Glad you haven’t had side effects. I think I am going to start tomorrow just plucking up the courage 🤣 it just worried me reading the side effects but most people say they are ok I guess!? So its 2 tablets with breakfast then 2 with dinner for the first 2 days, then just 2 tablets a day going forward. And progesterone from ovulation.. I’m going to get the clear blue digital ones I think to test for ovulation.

@SReyn thanks for replying and so good to talk to someone else on the same plan. Did you ever have chemicals before being on the plan? I wonder if progesterone from ovulation makes the womb more picky? I was worried because they didn’t give me steroids but looks like this is commonly prescribed first so I do feel a bit happier hearing that xx

Oh wow you do travel far, They have always been amazing at Epsom the midwives / specialist team. It’s good you can continue your treatment there so they can support you all the way 🤞🏻

I actually don’t know anyone who’s has high killer cells so finding your post has been amazing for some support so thank you!! I’m still worried about the side affects but if it’s the only way forward I’m willing to try anything!

I used the ‘premom’ ovulation sticks and they have an app for support to talk to other people & ask questions. The tracking on the app is super easy as well, I’ve got pregnant each time from using the premom ovulation sticks xx

@Hayley220 Oh wow you do travel far, They have always been amazing at Epsom the midwives / specialist team. It’s good you can continue your treatment there so they can support you all the way 🤞🏻

I actually don’t know anyone who’s has high killer cells so finding your post has been amazing for some support so thank you!! I’m still worried about the side affects but if it’s the only way forward I’m willing to try anything!

I used the ‘premom’ ovulation sticks and they have an app for support to talk to other people & ask questions. The tracking on the app is super easy as well, I’ve got pregnant each time from using the premom ovulation sticks xx

@Hayley220 @JessL12 lovely to speak to people with the same issue and going through the same.

@Hayley220 I've never had CPs before and funny you should mention the progesterone making the womb more picky. I've come across hyperfertility and think I might have it - I get pregnant really easily - sometimes the first attempt and apparently women with hyperfertility have an 'unfussy uterus' which basically implants anything whether viable or not. Having done some research progesterone is meant to help. I've obviously also got high NK cells but wondering if hyperfertility might also be playing a part.

Alison said that I can try again on the same treatment and I imagine they're likely to add steroids at my appointment in April if I'm still unsuccessful.

I've also started using the Clearblue Ovulation Kit - I've never before but hoping if I pin point ovulation more accurately it might help. It may not make a bit of difference but you end up clutching on to anything within your control!

@JessL12 hope the scans go ok - sure you'll be nervous before each one. I also live really close to Epsom, about 15 mins away :-)

x

@star2022 hi there, I have some info for you which you may find useful!

From my experience he doesn't exactly give you a prescription. He gives you notes that consist of 'your plan' with all your medications on there and how/when to take them. They keep all the medication in house and then his staff sort of put it together for you and you pay at the end. I think the medication fees are pretty much what you would pay anywhere else for them.

With regards to what testing you could possibly get done from your GP to save some money (your results have to less than 3 months old), i got my GP to do:

1. Vitamin D
2. Full Blood Count
3. Female hormone check which includes prolactin, FSH, progesterone, sex hormone binding globulin etc.

I also had some other blood tests done but these were the ones that Dr S needed for his screening and found useful to have. Once you have your results from the GP you need to email the report over to his team before your appt so he has time to go through your results before you meet.

Hope this help! Any questions let me know xxx

Hi @star2022 aww I wanted to do the exact same thing about getting some tests off the nhs. I had got the female hormone ones done mentioned by @comingsoon786110. I wish I saw the message in time to get the full blood count and vit d because the costs of everything do add up! If you have ANA antibodies bring that test result with you too or maybe get one that's within 3 months, I got that one done amongst loads more.
He did say that unexplained infertility is complex because there's soooo many things it could be so he might test you for what seems a lot. Do you have any embryos left? I said I wasn't sure about IVF. I asked what he could do if everything came back 'normal' and I think he mentioned "average plan" and looking back I should have asked what that meant.

Does anyone on here have any ideas to what the "average plan" is? I have seen people prefer to the complex plan or the highly complex plan but not the "average." In fact, I didn't even know an average one existed!

Thank you so much @comingsoon786110 that's really helpful! When you see him for your follow up - how soon after can you start medication? Can you start trying straight away? I'm already getting impatient ha!

Having done 4 rounds of IVF already, I'm trying to save costs as much as possible so hopefully I'll save some money by asking my GP. Must have spent close to £20k last year, all to just be in the same position I was this time last year with no progress, except worsened mental health 🤦‍♀️

I did ask my GP whether they were willing to prescribe anything that gets prescribed by Dr S and was told as long as its on the formulary i.e its prescribable on the NHS they can. Whether they'll actually do it though is another story as I'm sure Dr S prescribes medication that's not licensed for pregnancy.

@star2022 you can pretty much start taking the medication from the next day but i chose to wait until i had returned from my holiday to start HCQ as it does give you a bad belly. I ended up starting it two weeks later- the day after i returned from Thailand.

It then depends on how long Dr S says you have to take your medication for before you can start trying again and/or of you you require intralipids.

I had to have HCQ in my system for a minimum of 4 weeks before i was allowed to start trying.

Hope this helps!

@Zest11 This was my biggest worry - that I'd be spending all this money and for my test results to be normal. When did you have your initial consultation? And have you had your follow up yet?

My positive ANA was picked up after my 3rd IVF round and was then put on low dose prednisolone, clexane and aspirin during my 4th round but it also failed. I was also tested for other immune disorders like lupus anticoagulant, antithyroid antibodies, IgG and IgM antibodies but they were normal - these were done October 2022 so I'm hoping he can use these without retesting as they cost me just over £500.

I have 2 embryos left but their grades aren't good at all so I won't be using them. I'm just hoping his treatment alongside trying naturally will help as I really don't want to do IVF again and also think if there's nothing structurally wrong then surely it should just happen naturally?! which is why I'm going down this route now hoping something immunological gets picked up and is my reason for implantation failure.

I will ask him what the average plan means, my appointment is in less than 2 weeks!

@comingsoon786110 That's awesome thank you so much! I was hoping you'd say that - I've just gotta hope now something gets picked up and he can help me.

I know you mentioned they supply the meds there and you can pay but do you know how willing he is to give you a private prescription for them? Like does he get funny about it? I've heard mixed reviews about his costs being overpriced - pretty sure I saw somewhere he charges £20 for a box of prednisolone? Not sure how true that is, but I was getting prednisolone for £5 a box on a private prescription during IVF and if you went to your GP they'd be able to prescribe multiple boxes for just one prescription charge so less than a tenner.

@star2022 i honestly didn't think to ask about getting a private prescription and i didn't realise it was an option either.

It might be worth emailing the clinic before your appt if you want to start treatment right away?

How long should I take hydroxychloroquine before ttc? Epsom told me to take the loading dose (I missed 1 tablet out due to being worried about side effects) so have taken 7 tablets in the first 2 days instead of 8. I will be taking the standard 2 a day from now on. But I am cycle day 4 so still on my period, would I be best waiting another month?

Has anyone reading this had success first try with just hydroxychloroquine?

@JessL12 @SReyn taking you both for your opinions on how long until ttc too :-)

@Hayley220 I actually can’t help with advice on this as I only started taking mine when I found out I was pregnant as I hadn’t had my test results back! Hopefully @SReyn can help

I’ve taken 14 tablets so far and I’m feeling ok. I would say my skin is a little more sensitive but I haven’t had anything else so far, keep my updated on how you get on 🤞🏻

thanks @JessL12 .. I dont think I have had any side effects yet either so that’s really good :-)

when is your first scan? Its good that Epsom see you really quickly xx

@Hayley220 That’s good :) I think there are a lot more side effects with steroids than there are with hydroxychloroquine!

I haven’t actually got it booked in yet, I’m only 5 weeks at the moment. So apparently I need a scan at 7 and 9 weeks and then 10 weeks I have a scan to check for abnormalities xx

@JessL12 great keep me updated! Do you know your nkcell numbers and what the activation was? I cant remember if you already said this.. but mine were really high so just wondered what yours were xx

@Hayley220 What were your numbers? I think I was a bit shocked and overwhelmed by everything they were saying I actually didn’t take it all in. I had to go for more bloods as they said they lost 2 of the results and to collect the medication and so much information was thrown at me I didn’t take any notice of the numbers!! I was too emotional as they said they couldn’t tell me how well this pregnancy will process which is hard to accept xx

@JessL12 ahh you poor thing. That’s not very nice to hear what they said.. I don’t think it was necessary to add more worry for you. My nkcells were like 375 ish which is apparently high, the other numbers were high too. I am feeling really worried about it all. My last loss was chromosomal though as it was testing. I have had 3 missed miscarriages but I do have a 2 year old.. so I am struggling to believe nk cells could be stopping me having a successful pregnancy 🤷‍♀️ I just dont know what to think really.

so did you fall pregnant whilst waiting for your follow up appointment and they see you sooner? Xx

@Hayley220 I’m actually more calm than I thought I would be. I’m just being as positive as I can. Did you have a easy first pregnancy if you don’t mind me asking? That is very strange how you have suddenly have this and already have a 2 year old…. I will ask them next time what my numbers are, I don’t have any children yet so I did assume there must be something going on. Our first pregnancy we found out baby had Down syndrome and wouldn’t make 20 weeks, then I’ve had 2 miscarriages

Yes I was suppose to have an appointment and they cancelled it and re arranged for 3 months time!! Just for test results… I found out I was pregnant and they gave me an emergency appointment xx

Ahh im so glad they gave you a fast appointment and it’s definitely giving you the best chance by taking the medication and having regular scans etc… this is a new pregnancy so definitely stay positive :-) are
you on a low dose aspirin too? I havent been taking this although they advised to.. it gives me heartburn, but once I have got used to the hydroxy I might try and add the aspirin in x