Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
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Hi ladies we did our donor egg counselling tonight, I actually really enjoyed it and made me feel more comfortable with being the parent of a donor baby I think it was really good for my husband as well. I just thought I’d tell you as I was worried I’d feel judged or they would say we do t think you are suitable to be a donor parent but it was very warm and kind and she said she feels we would be fine so I’m feeling happy and at peace tonight which is a lovely feeling. I did tell her about our positive test and she was happy to still go ahead with it all phew x

@Gizmo1983 thanks lovely! Seems I might have spoken to soon as the nurse rang me back about an hour after I posted above and said the doctor is worried my lining is too thick and doesn’t know whether I should start yet or not lol. Probs the bloody cyclogest that I was overdosing on to stop my period 🥲 she told me to see how I go tomorrow and hopefully AF starts properly and I can start the stims.

i know exactly how you feel with every day feeling like a million years. It’s soooo hard. Honestly I know everyone says it but the only thing that helps is being busy. Journaling helped me a bit if you’re in to that and positive affirmations etc. but nothing will ever take your mind off it properly, it’s so hard. Yes book the scan then at least you don’t have to think about booking it anymore haha xxx

@Hopeandfaith1990 oh no you’re kidding, nothing ever goes straight forward does it with us ladies, I hope so much you can just go ahead and get started. That happened with me with provera but it started and all was fine. I am crossing absolutely everything that you can get started,
oooh journaling is a great idea I love that at the minute I keep looking at kittens on pets 4 homes and watching kitten YouTube videos 😂😂😂. Maybe I should get a kitten that would certainly keep me busy lol xxx

@Gizmo1983 I totally get you with the scan situation. I know you are going to be so, so anxious when the time comes and that is totally understandable. You are very much on my mind x. I am now 7/8 dpo and dreading the likely negative test coming up. I know I have no reason to feel that way but cycle 7 feels like an age compared to previous conceptions and I am not sure how my body will take a fifth cycle of pred. Will just have to see.

@Objectiontime i totally feel you 😥. The one thing I always had in my favour was I used to fall pregnant quickly and then after my 15 week loss just nothing for 2 years ( minus the ivf) it makes you wonder why doesnt it, is it to do with the meds, do the miscarriages change something, could it even be emotional trauma? Time just slips away too quickly. The pred definitely takes its toll doesn’t it, about half an hour after I take it my brain starts whizzing 🤦‍♀️ xxx

Hey ladies,

so sorry to hear about all your losses @Frasmac - honestly its just so unfair and i can't believe what we have to go through. Its actually mental when you write it out like that and the fact we are still going. We are very strong and resilient.

@Gizmo1983 Book a scan for 6 1/2 - 7 weeks. The sickness in pregnancy i have heard is hereditary and the pred helps it too. My mum and sister both never had any nausea or sickness.

Welcome @CarpeDiem75 - sorry you're here, but we have got you :) the difference i was explained was Hydroxy is prescribed if you have had a later loss and you need to take it to full term. Also try not to stress about the weight gain, i lost half a stone in a week to try and get BMI down. A lot of it will be water retention and weight gain from the meds.

@Hopeandfaith1990 really hope you can go ahead with the ivf this cycle, its amazing - we are always trying to get lining thicker and not its too thick, honestly. I am supposed to hear back today about ivf nhs funding. I don't hold out too much hope. I feel like i have no luck every so why even hold out any hope for it.

I started using the ovulation tests and premom this cycle. Think i am ovulating today as it looks like a peak. Also nearly passed out having intralipids last week, Blood pressure and pulse were really low and felt awful. Maybe it was being back at the clinic.

sending love on this sunny weekend in the UK.

@Jecca88 hey sweet it’s probably a massive culmination of everything and your body and mind are struggling. It’s just a bloody shit time. I’m thinking of you loads sweet. Xxx
@Hopeandfaith1990 hope you got the go ahead got everything crossed.
afm ugh started brown/pink ganky discharge, very achy, getting like cold fire/heartburn sensation in my tummy feel pretty grotty. I’m guessing this is probably the beginning of the end if so I just hope it happens naturally not a Mmc and my body gets it out itself instead of the usual months it takes me to get rid of what’s left. Tell you what this shit messes with your head

@Gizmo1983 Sorry to hear you've had some discharge. Totally understand why you would think its all over but it might not be (I know that sounds hollow to us recurrent loss girls). How many weeks/days are you now, could you book a scan? Thinking of you. This is so hard xxxx

@Hopeandfaith1990 hey sweet yeah have just booked one for Tuesday night so not too long to wait, it will be one day before 7 weeks so hopefully will be far enough to see something or nothing. Xxx

As always, crossing absolutely everything for you! Rest up xxx

@Hopeandfaith1990 thanks so much ☺️☺️☺️. How are you? Xxx

@Gizmo1983 So hoping that the discharge stops and it is just old blood being displaced. No reason why this shouldn't be the case but, as I think someone said above, we ladies with previous bad experiences worry so much more than others who haven't.

@Objectiontimei have heard of intralipids but same I can’t afford them and the NHS don’t offer them! But I have seen quite a few people are allergic to them. Hopefully the pred will work for you!! How are you?
@Hopeandfaith1990thanks! I feel a bit less bloated and puffy hopefully that’s my body getting back to its old self! My cycle is really long.. I hope I will have my periods soon so I can decide whether to try again… at the same time it gives me more weeks under the hydroxy as it can take at least 6 weeks to work so don’t want to rush! How are you? Have you been able to start your stims?
@Jecca88thank you! It is nice to be able to talk to other people so thanks for creating this group 😊 so many fears,unknown and questions around this process that friends or family can’t answer! So I am happy to have found this place. How do you guys manage the process..have youths your families and friends? Not many people know about my 7 losses or what I am going through… I have not even told anybody about my last loss.. many thinks I should stop trying… it is hard! But something inside of me keeps telling me don’t give up! hopefully it will be ok for all of us🤞

@Gizmo1983 don’t give up hope it might be absolutely nothing many people spot in their pregnancies. I know how anxious it feels I am keeping everything crossed for you!!

Hello, I'm a bit anxious to be honest. Got a BFP yesterday at 9 doo. Never had one before 12 before. Terrified but trying to relax and will see what the meds do. X

@Objectiontime oh that’s amazing!!! Congratulations!!! Ok stay positive!! Which medication are you on just now? Do you need to start more of them now you have a positive? I am so excited for you!!😊 X

@CarpeDiem75 Thank you, currently on pred, cyclogest and low dose aspirin. Trying to stay positive, especially with the occasional cramping. Time will tell, I guess x

@Objectiontime omg that’s amazing gentle gentle whisper hugs xxx

@Objectiontime gentle congratulations, I am rooting for you. That’s fingers and toes crossed for you and @Gizmo1983. I keep holding on to that 81% success rate & the fact that we are all doing everything we can.

As for me, I’ve now started the loading dose for Hydroxy and will have another 2 Humira doses. Not the nicest appointment with Shehata- he really doesn’t seem to like anything being questioned! I gently asked how important the timings were for the medication and he bit my head off! Annoyingly the first month we can try is end of June and have worked out we will be in different countries when I ovulate. Vaguely wondering about taking some progesterone to delay my cycle a few days, though I probably won’t- on enough drugs as it is! Also concerned about having a follow-up in 3 months and wondering if he will take into account that it’s been 2 cycles not 3. It doesn’t seem like much of a chance to try! Does he make you do all the tests again?

I have also started seeing an acupuncturist who was hugely positive, had lots of tips though a bit sceptical of Shehata’s methods. I had said I’d give it a year, but veering more towards 6 months now as it just feels all consuming.

Much love to all, hope you are enjoying the sunshine and doing something nice. X

@Fletchasketchare you seeing Dr S via the NHS? Can I ask why you could only start end of June? Is that for hydroxy to start working? Why is your acupuncturist sceptical about his method? Sorry for all these questions but seems I am under his protocol I am interested!!😊 what is humira for in your case? Do you know why he gave you hydroxy for and not prednisolone? Thanks!!!

Hey, no worries, more than happy to answer your questions- I’ve had so much help and support from this thread, it’s nice to be able to give a bit back. I’m at CRP privately as I wouldn’t qualify under the NHS (2 previous miscarriages). I’m also 42 now, so time is of the essence.

Yes, Hydroxy needs at least 4 weeks to load according to Prof Shehata. I’ll also need to let the next 2 doses of Humira work too. I will be on Pred too, but only from ovulation, though I think this is the same for everyone. There’s a lot of scepticism around immunology for RPL, so she’s not unusual, though accupuncture favours the natural over drugs, so not surprising really. There’s no two ways about it, going down this path is a leap of faith, though one which is backed up by a really encouraging success rate. A PP made the really good point that medicine is constantly evolving and that this may well be mainstream in a few years. Hope that helps, but if I’ve missed anything, do ask.

Hi @Fletchasketch thank you so much foR your kind words they really mean a lot.❤️.
im sorry dr S was a bit snippy i seem do have seen this mentioned a few places recently. Im sure he’s making a fortune from us all so to be mutually respectful and it’s fair enough to want to ask questions on our own treatment really isn’t asking much is it 🤔
I hate the feeling of wasting time it’s rubbish especially when we haven’t got time to waste. Apparently pre ovulation intralipids weren’t a thing until Covid and then they became mandatory I think it’s a little unfair as they make treatment soooo expensive.
totally agree with the other PP there is so much we don’t know yet there are posts where women went back to no treatment and then had a healthy baby ( wish this was me lol). I was on the full protocol last time and I still lost at 10 weeks a genetically perfect baby. I think I feel safer taking the meds I do also think a little bit of luck ( or bad luck) is in there as well xxx

@Fletchasketch thank you! I am sure the end of June will arrive quickly and you can try again 😊

@Gizmo1983 that’s so interesting that the intramipids weren’t a thing, I think they’re the thing I’m most sceptical about and from what I hear not available to his NHS patients. I hadn’t realised they take an hour each time either which is going to be a pain in the bum to fit in. I shouldn’t whinge, I know they’re not available to so many people and we’re lucky to have the option. My acupuncturist also said she knows people who have up the protocol and had a healthy baby. The level of mystery is maddening! I hope you’re doing well today and will be thinking of you for your upcoming scan.

@CarpeDiem75 Thanks, hope it was helpful. I’ll be in Menorca with a friend for end of June, and my partner will be in Wales; so it’s either miss that month entirely or try to push out cycle somehow. The things we go through!

Hi @Gizmo1983 @CarpeDiem75 I'm doing okay thank you, I've done two stims injections now!! Still quite nervous each time but its been okay. I'm more worried about the mixing of the medicine rather than the actual injection if that makes sense - I've watched the videos the clinic gave me about a hundred times 😂how are you both?

@Objectiontime gentle congratulations to you, how are you feeling today? I know the anxiety well but today you are pregnant.

@Fletchasketch that sounds like a tough appt - I've never met Dr S but yes I'd agree that answering questions is 100% part of his job and this protocol is not easy to get your head around at the best of times. I love my acupuncturist - she's very knowledgeable and supportive. It really relaxes me and its nice to talk to someone about everything. I've used Cyclogest to delay AF before and it worked pretty well - I was bloated and moody but it worked haha.