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

@Annie808 The side effects of Humira do seem scary, but also consider that it's designed for people with long-term autoimmune conditions (e.g. Rheumatoid arthritis, Crohn's disease, etc) who can be on it for years or even decades. I've been on a different anti TNF-alpha drug (Infliximab) for over 5 years for an autoimmune condition, unrelated to my miscarriages. It's a very similar drug to Humira and I was offered the choice between the two when I started treatment because they both act in a similar way and have similar side effect profiles. I was terrified when I was first told I needed to go on an anti TNF-alpha drug for my autoimmune condition because of the side effect profile, but I can honestly say it has given me my life back and has been a miracle drug for me. I know it's probably so much harder to accept when you don't have an obvious illness making you feel like utter crap every day, I just wanted to offer a slightly different perspective. Well done on giving yourself the first injection, I know it's not easy.

Thanks! @Sophi81 @Sezmarelda1
its good to remember to trust the clinic and their experience and also clearly a lot of women have had positive experiences!
@Sezmarelda1 amazing that the drug you’re on has made such a difference to your life. I also did some more reading on Humira which helped put things into perspective.

Feeling ok this morning after my first shot!
I’m on a complex plan so will also be having Intralipids, Pred, Ome, Aspirin, Progesterone and all the vitamins!
I’ve had 2 miscarriages and 1 chemical between April - Sep this year, hoping 2023 will be a more positive year 🙏🏻

Really appreciate these threads, learnt so much just by reading some of your journeys!x

@Annie808 I was also overwhelmed when I read the humira side effects leaflet. I took it and all has been fine. That was at the start of the year I think.

I'm currently at CRP hooked up to intralipids. I'm on a letrazole 75 rounds and have 3 follicles so triggering on Sunday. Got a bit of fluid in my uterus, which is annoying, but not enough to need to cancel.

@Sophi81 congratulations! Wonderful news. I don't know your history but it sounds like you've been on a journey

@seven201 thanks for sharing your experience! Feeling fine since my first injection and hopefully it’s making a difference to those tnf alpha cells!

I’ve also never had an Intralipid , having my first in a couple of weeks. I’ve heard it’s good to have an Intralipid on a full stomach, is this true?!
Hope yours all went well ahead of your trigger!x

@Annie808 I've not heard that about intralipids. I think all my appointments have been after lunch so I would've eaten. I've never had side effects from intralipids. There's a sign on the wall to let them know if you've had sickness or diorhhea (can't spell it). The lady in the chair next to me on Friday said she gets bad headaches from it. Hopefully you'll be lucky.

Thank you so much for the advice @LuckyNo14 @MyEasterEggs @Tgrf55 I really appreciate it. Definitely still feeling apprehensive and had a really upsetting conversation with my MIL who made a really unhelpful comment about being worried about taking so many drugs and them potentially being harmful to the baby. My sister made the very good point that without them there wont be a baby but it's still really upset me when I really just need support right now. She obviously doesn't know what she's talking about but it does worry me and I know that in the future if there were any problems she'll always be thinking it's because we've had to take steroids etc etc while pregnant. It makes me not want to open up to her anymore. Sorry to offload it just really upset me. I'm not up to speed with the thread but I really hope everyone is doing really well.

@Maxime34 my MIL is similar and very anti medication. She told me not to even touch a paracetemol during pregnancy 😂 we decided not to tell her that i took steroids for 3 months. Don't worry though. If something were to go wrong and hopefully nothing will, it wouldn't be because of the steroids. The clinic wouldn't have such a high success rate if this were the case. Xx

Hey @Annie808 it sounds like we had very similar results and I've been given the same protocol from Dr S. Ive had my first dose of humira and felt no side effects and plan on having my second on Wednesday. We have a consultation the following week with Dr Edge to go through the rest of the drugs in more detail but it's the same as what you've been prescribed. Unfortunately I think I will just miss my Nov fertile window so we will have to wait until Dec for my first lot of intralipids and then it's back in the TTC game. I have to admit it's actually been a nice break from it since my last MC in August. It's the least stressed I've felt all year!! It really does take such a toll doesn't it. Anyway I just wanted to say hi as it sounds like we're at very similar stages, keeping my fingers crossed for you and everyone else still waiting for their rainbow baby x

Thank you @Tgrf55 I really regret telling her to be honest. I might just tell her we decided not to go down this route after all and keep her in the dark about the whole thing now. Although if I do get symptoms it'll probably be quite obvious. I'll definitely be prepared if she has any more unhelpful comments in the future. I agree, and of course have asked about how the meds might affect the baby and was very reassured by the response I got.

@Maxime34 the only possibilities are growth restriction (very rare i believe) nd cleft lip. I think thats it but i could be wrong. You'll be fine. And it'll all be worth it :-)

That's what I've read also but as you say rare and those things can occur regardless so you wouldn't be certain what was the cause necessarily. Really appreciate your reassurance though @Tgrf55 xxx

Hi @Maxime34 yes seems like we’re at a v similar stage and plan! Great that you also feel Humira has been ok so far. What were your tnf-alpha levels? Mine were 34, I think the clinic wants them under 30 so hopefully they drop quickly!
i know what you mean about having a break from ttc provides a bit of normality and free of the stresses that come with trying after losses. Since March I’ve just been in constant cycles of ttc-pregnant-miscarriage-recover, so draining and v hard when friends announce seemingly easy pregnancies.
Sorry to read its been hard with you MIL, I’ve found even well meaning people in my life just can’t comprehend the mental and physical toll of miscarriages and they don’t understand that the lack of research and support for miscarriage means those who go through it are having to make tough choices about what medication to try or not. Apart from a couple of close friends, i’m keeping the immune meds quiet. Mainly bc I don’t have the energy to explain the ins and outs of recurrent miscarriage options to lots of people!

I think that's quite wise @Annie808 as much as we need support when you don't quite know what the reaction will be it's probably best to just stick to speaking to the inner circle who really get how you feel (although unless you've been through it as you say, it's hard to really understand) which is why these forums are so needed. Here were my results for NK cells and TNF Alpha. Have to say I don't really know what it means or where they should be but they were considered high.

TNF Alpha (High)-33.6
Natural killer cell count (High)- 297.1 (14.6%)

my antinuclear antibodies were also moderately positive. NK-Cell Cytotoxicity assay showed good reactions to the drugs so that was something positive. So probably similar to what yours said from what you've said? Fingers crossed the treatment works for us!! When are you getting your first lot of intralipids? As I said I think I will need to wait until mid Dec so let me know how it goes. X

@Maxime34 yes will let you know, my Intralipid is next week. Although ideally would have been week after but I’m away so was agreed I should have it next week.
my results were:
antinuclear anti - neg
tnf alpha - 33.9
NK count: 160.9 (normal - is below 200)
But Activation marker NK cell: 1.01 (high - should be below 0.8) - think this means my NK cells become a problem once in pregnancy state. But also not totally sure what everything means!x

It is a minefield isn't it @Annie808 I'm sure we'll be pros in no time! That's good that your NK cells are well in the normal range. My activation NK marker was normal but then I have high number of the cells... It's hard to know what to make of it all. Good luck with your first intralipids and have a fabulous holiday, great time to be getting away!

I had my anomaly scan yesterday and found out our little one is measuring very small, although they look healthy otherwise. We're not sure yet if it's just a naturally small baby or an indication of a problem. I've been referred to fetal medicine so we're waiting to hear what the consultant thinks. Another thing to add to an already stressful pregnancy!

@Sezmarelda1 Sorry to hear that, definitely added stress for you! How far behind on the chart was the baby measuring? Where did you have the anomaly scan was this NHS?

@seven201 thank you. I hope you are well x

@Maxime34 sorry to hear you have been having issues with your MIL. To be honest I don't talk to anyone about my fertility journey anymore as I don't think they understand. This is why I like this platform as we all understand each other and I get all the advice and support I need from this group so just wanted to say thanks to everyone x

@Tgrf55 lol @ no paracetamol 😂. So you are correct in saying that the meds can cause growth restrictions. Not sure if it's rare but it happened with my last pregnancy under Dr S plan. He was unaware of this as I was discharged by his clinic by 16 weeks. But when I went for my NHS 20 week scan the problems started. It was horrible going to every scan and being told the baby is measuring small and not growing. In the end he had to be delivered by emergency c-section as his heart rate was dropping and there was a risk of stillborn. He was born weighing 3lb 10oz at 36 weeks. We are lucky he even made it to be honest. So I then discussed this with Dr S as we have been trying for our second since beginning of the year and as he wasn't surprised at my son having Growth restriction which he said is because I wasn't on the hydroxycloriquine 🤷🏽‍♀️. To avoid this happening again he put me on hydroxycloriquine but bcos of the side effects I was having he changed it to GCSF. To be honest I'm surprised no one mentioned it to me at the time as it caused me a lot of stress not knowing what was happening.

I am extra worried now with this pregnancy as I'm still not feeling any symptoms and my scan with CRP isn't until next week 😩
But I do have a scan with EPU on Thursday and I am so worried that they will give me bad news 😞

Oh @Sezmarelda1 that must be so worrying but positive that baby is fine otherwise. A friend of mine experienced similar and little one was totally healthy. Always on low percentile but always on track. What’s important is you’re being monitored as she was 💛

@Sezmarelda1 sorry to hear you are having a stressful time. Reading your message is bringing back everything I went through in my last pregnancy. Hopefully all will be well x

@Sophi81 Oh really, that's so horrible having to go through that. So were you only taking steroids at the time and he said you needed hydroxycloriquine too? I do worry about it too. My 20 week scan measurements were fine and i had one the following week at CRP which was also fine but i still worry as my bump isn't big at all!

@Tgrf55 yes I was just on steroids and Cyclogest from what I can remember. Now I'm on steroids, Cyclogest and GCSF and this time they will be giving me intralipids up to 32 weeks and won't be discharging me at 16 weeks. Glad to hear your scans have been good 😃. Are you on hydroxycloriquine?

@Tgrf55 my bump was very small. My son is actually still hovering below the low percentile line at 18 months old. When I take him out and mix with other babies he is tiny compared to them. But I was reading about FGR and it says babies catch up by 2 years old so I've got my fingers crossed for that 🤞🏼

@Sophi81 Did you not go back to the clinic when you found out about the measurements? They can't get rid of me 😂
No i was just on steroids and cyclogest plus metformin and intralipids etc. Hopefully it's ok, they haven't said anything about growth issues so far. Kicks are getting stronger so hopefully all is ok. I still worry though! xx