Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

Hi all! Weird request but does anyone have any positive stories of their 6 week scan to share? I'm working on trying to be more positive going into my scans as my therapist as told me that I am grieving twice by being so anxious and negative in the lead up, so I'm trying to look on the bright side.. but you know how these things are, I am terrified, it's on Tuesday morning 😬

@Lozfish can't help with the positive stories I'm afraid, but I was always told to remember that today you are pregnant and worrying about what might happen won't stop it happening. No point in being upset about something you can't control. Sooooo much easier to say then do, but just try to enjoy being pregnant 😊❤️

@Kelspj How are you feeling? Sorry I don't have any insights on Pred but have been asking myself the same question. How careful you have to be probably also depends on whether you are fully vaccinated or not. I hope you are not experiencing any major side effects.

@Lozfish Crossing my fingers for your scan on Tuesday.

It's our first cycle of trying again and I'm now in my tww and feel a bit like I'm coming down with a cold.

@Annabell1 I feel fine thank you! No side effects really as of yet, started taking it on Monday along with cyclogest, have been crampy and bad back but think that’s due to the progesterone! I am not fully vaccinated yet so will try and be as careful as possible! How many DPO are you? X

@Lozfish
I was so worried for my 6wk scan but it was really positive & Dr S said straight away he could see HB so I was instantly reassured & relaxed,
It’s so hard to stay positive at times,
I now have a 4month old little girl so I can happen. Good luck for Tuesday xxx

@Kelspj That's good to hear. :) I hope your back and the cramps will be better soon. In that case I would try to be careful too. It is suppressing your overall immune response, so you will be a bit more vulnerable. Do you already have a follow up appointment with Dr. Tozer?
I'm 8 or 9 DPO today, so will be able to test soon. I don't want to get my hopes up, but I have the feeling that something is going on. X

I had HCG and thyroid done at Dr Tozer’s clinic on Monday and then back again Wednesday but haven’t actually seen her. Good luck for testing @Annabell1 - let us know how it goes! X

Thanks everyone for the messages. Just need to rip the plaster off on Tuesday. Fortunately I am feeling awful so I don't have my normal energy for intense anxiety!

Good luck for testing @Annabell1, hope you get your BFP in the next couple of days xxx

Thank you @Kelspj & @Lozfish. I will keep you posted.
I'm really crossing my fingers for both of you ❤️

Hello everyone, I've got my adalimumab and tried phoning the clinic but no response. Just wondering if there is a specific time I need to take these?

(Asking because pharmacy said their might be?)

@SunDance21 I don't know the answer sorry, but best bet would be to email the nurses as it's easier to get through via email x

@Lozfish how did you get on? 😊❤️

@SunDance21 it went really well! Strong heartbeat and the growth was perfect for dates. My first positive scan ever ☺️ Dr. S was amazing, immediately told me he could see a heartbeat. Turned around and my devoid of emotion husband had tears in his eyes! Trying not to celebrate too much as there's a long way to go, but it's a big relief.

Hope everyone else is ok? x

@Lozfish I was also thinking of you and hope you are alright. 🤗

I had a positive test now and started taking Pred. Very early days, so I try to stay calm and not think about it too much. I really hope the medication makes a difference this time.

@Lozfish I'm so happy for you! That's amazing news! ❤️

@Annabell1 congratulations!! ❤️❤️

@Lozfish Sorry, I missed your comment. Oh thats great news. ❤️ So good to hear. 😊

@SunDance21 Thank you. xxx

Congratulations on your BFP @Annabell1 ❤️ Hope you're ok. I told myself it was just a positive test for the first few days, not a pregnancy and that really helped me just stay calm and relaxed and not obsessing over symptoms or lack there of x

@Lozfish. Thanks, I'm alright. I think that's a really good approach. I will try 🙏🏻
I guess I also underestimated how important a good Dr is. Someone that is there for you and that takes the time to listen and care. Truly makes a difference. Xxx

Hello everyone, hope you don't mind if I join in. We are starting treatment under Dr S after 5 early losses. Our results say I have high NK cells with high activation, and I also have high TNF alpha. I've been put on the complex plan with pred, omeprazole, Cyclogest, intralipids, and adalimumab for the TNF alpha. OH is waiting for his DNA fragmentation results but I'm convinced it's all me and that was £450 wanked away quite literally!

I've had my first of two injections of adalimumab. It was a nightmare trying to get this drug honestly, no where near me had it, either they couldn't get it or they could order it in for £850 - £1000! 😱 so I ended up doing a 5 hour round trip down to the hospital in Wimbledon dr S had recommended (we couldn't go there on the day we were in Epsom unfortunately) who sold it to me for £400. I am a bit annoyed the clinic didn't order it in for me so I could have just picked it up at the time! We have enough stress to deal with on this journey without having to shop around for the drugs as well I think!

Sorry this is TMI for my first post but I've had a scary side effect of either the adalimumab or the aspirin, I went to the loo last night and there was a lot of blood in my poop - like fresh blood like you get in the middle of a period, just coming from the wrong place 😳 I emailed the clinic this morning to ask their advice and they just said it's not connected and to speak to my GP. I'm a bit upset at this, as gastrointestinal bleeding is listed as a common side effect for adalimumab on the leaflet, and NHS website also has it down as a serious side effect for low dose aspirin.

Surely if I contact my GP they will simply tell me to stop taking the adalimumab and the aspirin and will probably give me a telling off for taking unnecessary drugs?!

So I've gone back to the clinic showing them the links to where it says this is a side effect - I just want reassurance basically that this is normal ish and it is ok to ignore it, and that I'm not actually about to haemorrhage internally 😬😬😬

Has anyone else had this side effect?

@Amy00 I'm so sorry about your lossses ❤️❤️

It probably is linked as it sounds like a pretty big coincidence if not, if I were you I would contact 101 (I think that's the number) for the NHS triage number and see what they say. I would also call your GP and talk to one of their doctors ASAP. Bleeding like that isn't normal.

I got my injections on Monday and have been to scared to take them. 🙈 having to wait until the weekend so my OH's Mum who is a nurse can do it for me as I'm so worried about having an allergic reaction. Also had to go to Wimbledon to get them as I couldn't source them any closer.

I don't personally find the clinic helpful tbh. Had a really bad experience when talking to one of the nurses that made my OH not want to continue with them but I want to stay as I want to feel like I've done everything I can.

@SunDance21 the clinic has got back in touch with me to say Dr S has spoken to two colleagues who are gastroenterologists and they all say they have never heard of this side effect of adalimumab. Despite it being listed on the leaflet as a common (1 in 10) side effect. So he says he sure it is unconnected but he wants me to see a gastroenterologist consultant before he will proceed further with treatment. Which I will have to do privately as obviously an NHS referral would take months and I want to get on TTC! It's just more expense and faff and I just want a baby - why is it so hard ☹️ now I'm just hoping it is just a random horrible side effect and nothing more sinister 😬

The injection is horrid - don't blame you for waiting! I would have loved for a nurse to do it for me, I don't think I would have minded then. My OH is a bit weird about needles so I was feeling his anxiety as well I think! It is over and done with very quickly once you actually do it though. You can do it! 💪💪

That's not good with the nurses. I know what you mean though about feeling you have to stay with them. There aren't really any other options/very limited options, and we've already gone through all these tests and got this far.

@Amy00 NHS referrals are a nightmare at the moment. I would definitely give your GP a call though just in case. If it's an allergic reaction they might be able to test you at the doctors sooner.

I know exactly what you mean about just wanting to get on with TTC... my work colleague is pregnant. She had an ectopic inbetween my miscarriages so it hasn't been easy for her, but whenever she rubs her belly and makes comments about Baby Brain etc... I just can't help but feeling a little jealous. Why can't that be me? :/ I sound like such a brat. (I am genuinely very happy for her as obviously wouldn't wish this on anyone!)

I'm so scared of needles it's actually quite pathetic 😂🙈 I'm a bit annoyed at myself as it's meant I'm a week further behind... but it made me cry five times in two days soooo I gathered the 5 day wait is probably worth it for my husbands patience if nothing else 😂

@Amy00 I'm so sorry for your losses. ❤️
I would try to do a bit of research and then go to your GP and ask them to run a few tests for you. My GP is usually quite good, if I tell her exactly what I want. Be persistent. Or have you considered going to A&E?
All the best xxx