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

@Welshlady89 I am so sorry to hear of your losses 😞. That feeling of never seeing a heartbeat is so heartbreaking. And I totally understand not being able to feel positive in your current pregnancy. I have however had 1 successful pregnancy through treatment plan of Dr S even though it came with many complications we do have 1 adorable little boy. But I do remember not enjoying the pregnancy and being negative right until the moment he was born. It's just so hard to remain positive, especially now in my current pregnancy. It's taken me almost a year this time to get pregnant under Dr S plan and the funny thing is this time i got pregnant naturally🤷🏽‍♀️. I really thought I was going to be positive and excited but it's like the same as before. I feel like time is dragging just to get to my next scan. I had my first scan last week and next scan is Friday but feels like forever and my anxiety levels are just going up. I am so scared they will give me bad news 😩. I can totally relate to being realistic than positive. This will be my last time trying as I'm 41 and if anything goes wrong I will be devastated so everything really rides on these upcoming scans. But as I said the positive is that it has worked before so holding onto that hope. I really wish u well on ur upcoming scan and have my fingers crossed for you! Will be thinking of you x

@Sezmarelda1 I am feeling so nervous, anxious and agitated. Honestly the wait is just soo long! I feel like I should be 12 weeks by now and not 6! It's just so bizarre. Sorry to hear you are still experiencing issues in your pregnancy 😞. How many weeks are you now? When will you get the results of the recent tests? Hope they all come back good 🤞🏼. Will be thinking of u. How are you feeling with all this going on? X

@HopefulH awww sorry to hear you have not been in a good place 😞. It's so hard to shake these feelings no matter what anyone says. I would however say that for me going to dr s to get a second opinion was the most important thing for me as I had decided I didn't want to go through another miscarriage without knowing what's going on. I was sick and tired of listening to nhs just telling me everything is normal and just keep trying. Then lockdown happened and everything went to standstill which sent me in panic mode as i was getting older and nhs had discharged me.
Waiting for the results from dr s did give Me some hope. Of course when the results did come back I remember dr s giving me a huge list of things which were wrong with me. I remember not understanding any of it as it was just too overwhelming and I remember asking can I be fixed? And he said oh yes! That's all I wanted to hear as to be honest I didn't understand anything from that appointment. I just wanted to know if he can give me a baby or not. But even after all that once I did get pregnant I couldn't snap out of that mode of being anxious and negative. I feel like that again now even though I know I finally had a successful pregnancy. Its definitely not easy pregnant or not 😩. I really wish you well and good luck on your results x

@InvisibleDreamer I am exactly the same, rather not have hope so I'm not devastated later but then when it does go wrong I am still totally broken and an emotional wreck! I wish I could be like others and get excited to announce my pregnancy and celebrate but I can't as I feel like I have nothing to celebrate until I have a baby in my arms. I wish you well in ur journey x

@HopefulH awww yes the cost is always a worry! I had saved some money and ended up doing superovulation for nearly a year with dr s and basically ran out! That was disappointing for me as I really thought I would have got pregnant months ago. So now I'm using my credit cards and hoping it doesn't spiral out of control. I am only working part time now also since having my son so money is pretty tight.
I had no idea nhs do superovulation as they never offered it to me. To be honest I didn't even know what that was or anything about immunes / killer cells until I met dr s. In fact I didn't even know who dr s was. I just remember being secretaries from my last loss and searching for a private clinic

@HopefulH .... searching for a private clinic and 2 came up CRP and CHRG I think they were called and I just messaged both not knowing anything about them! Obviously I was shocked when they explained the fees but like I said I just wanted answers. It was only after I got pregnant I researched dr s and realised how popular he was. So I was quite naïve I'd say going in to all this. Obviously since then I have learnt so much and also had the chance to chat to all you lovely people and share our experiences!

Hi,

Me again with the questions! Can anyone help?

I’ve been finding out about the immune tests I may need, unfortunately it’s quite difficult for me to get to London and my clinic have said the following have to be done in London because the samples need to be frozen or sent off straight away.

So the two tests I can’t get done here are the cytokines TH1:TH2 & TNF alpha test. Can anyone tell me their experiences/opinions of how important these tests are? Does anyone know what the treatment is if these results are out of range? I will be on 10mg of prednisolone anyway.

Thanks! x

@InvisibleDreamer I had these tested and my levels were above normal so I’ve had intralipids every 4 weeks on top of 20mg pred. I had an infusion 5 days before my transfer, 4 weeks later when I was 6 weeks pregnant, then again at 10 weeks and soon (I hope 🤞🏻) 14 weeks. My clinic would usually stop at 10 but I’ve had a second trimester loss so decided to have further infusions.

@InvisibleDreamer my TNF alpha was high so I was prescribed Humira to bring it down before doing an embryo transfer.

@MyEasterEggs were the Intralipids for the cytokines? Good luck with your pregnancy x

@Ifitistobesaid I am trying to weigh up the risks/benefits of Humira. I would feel more comfortable taking it if I had a definitive diagnosis of an autoimmune disease. Did you have any side effects with it?

@InvisibleDreamer yes my
understanding is that they’re lowering my TH1:TH2 levels. I was on the fence for such a long time with immune testing but I’m glad I did it. This is the furthest I’ve been in a pregnancy in six years. Still a way to go before I feel safe though x

@InvisibleDreamer I didn’t have any side effects with Humira, but in hindsight I wish I had asked Dr S whether there were other medications I could have taken to bring down my TNF alpha levels.

For those of you carrying on with cyclogest into the second trimester, did you continue with 2 x 400mg a day or reduce your dose to 1 x ? I’ve just weaned off prontogest so will probably stay on 2 x for at least another 2 weeks.

@MyEasterEggs I’m ok 2x400mg a day until 16 weeks.

I’m on I mean

@MyEasterEggs in my last pregnancy they kept me on Cyclogest until quite late.. I think it was until 26 weeks 2x400 pessaries a day

@InvisibleDreamer for me TNF alpha was so important to be tested as that was sky high for me. 10mg of pred alone wouldn’t have been able to tackle that. I also took humira, I wasn’t worried about any side effects or long term issues as it’s only 2 doses. People are on it life long for auto immune diseases. I didn’t have any side effects from humira at all.

@MyEasterEggs I’m on Cyclogest 400mg twice daily until 36 weeks due to a shortened cervix

Hope everyone is well ❤️

@MyEasterEggs I was on 400mg Cyclogest twice a day until 16 weeks, and am continuing with 400mg once a day until 34 weeks.

Thanks everyone.

@Sezmarelda1 do you also have a shortened cervix?

No I don't @MyEasterEggs. I could be wrong but I think Prof Quenby wanted me to stay on it longer than usual because of my two late losses.

Hi everyone.. so I had my scan on Friday at CRP and everything was fine. I was told I am measuring 7 weeks 2 days which is still a week behind but we believe that is due to ovulating late. Since then I have been unwell with a really bad cough and blocked nose which is keeping me up at night. I haven't taken anything for it but now I'm worried that will this have affected the baby. I'm so worried at my next scan they will give me bad news. Has anyone else been unwell whilst pregnant? I am going to ring my GP in the morning anyway but I can't shake off this bad feeling 😩

@Sophi81 I was very unwell with my firstborn. Floored with flu-like symptoms for a week or two. She was totally fine. All of our resources are going to baby but there’s so little left to help us feel better! And energetically you’re probably a bit spent at this stage. Try not to worry and wishing you a speedy recovery ❤️‍🩹

Hi everyone!

Does anybody know the pricing of intralipids and scans at CRP? Also is it really necessary to do all the scans Dr S recommends?

Thanks in advance 😌😌😌

I'm glad they saw a good amount of growth on Fridays scan @Sophi81 , when is your next scan? I think it's only natural to worry when you've been through recurrent miscarriage. There are some bugs that can affect a pregnancy (things like cytomegalovirus) but the majority of coughs and colds shouldn't have an impact as long as you stay well hydrated and don't take any meds not recommended in pregnancy. So many people have successful pregnancies despite having young children in the home who bring home every cough and cold going. I can't remember what meds you're on but if you're on pred or other immunosuppressants they can sometimes make coughs and colds hit you a lot harder than usual too. Absolutely no harm in getting checked out if you would find it reassuring, any sympathetic GP would understand your need for that. I remember having a really nasty cold later on in my successful pregnancy and I felt so unwell and breathless. The GP checked me out and had no concerns, and things turned out ok in the end. It's so hard not to worry though. I'm an avid hand washer in this pregnancy because I'm so scared of catching something nasty, it's probably verging on OCD to be honest! It's very hard when all you want to do is protect the baby. I hope you're soon over the worst of the cough and your next scan is positive x

@Sophi81 dont worry - it’s just your anxiety making you feel this way. I had covid when I was 18 weeks and was beside myself with worry. Baby was fine from it? They are well protected in there. ESP colds - flu can be risky but you wouldn’t even be able to type that message if you had flu so I’m sure it’s just a cold. It’s impossible to avoid them at the moment! Rest up and get better soon xx