Immune/NK cells pred thread #34

@Jecca88 Stay strong 💪 I know how crap it is when you just want to get on with it all and you see all the families everywhere but keep determined, hopeful & ride high from your lovely holiday!

@Hopeandfaith1990 Gosh I literally know nothing about Hydroxy which is bad really! Will you try in October or wait until November?

@MC8 Definitely stay on the meds and see if the lines get darker 🙏. Everything tightly crossed for you!!

@Fletchasketch Very best of luck, which day is your scan? It's such a horrid wait isn't it. Really hoping it's your time 🥰

@pagey23 thank you - I generally always feel the cold and am definitely noticing the change in seasons now so make sure to wrap up more! Thanks for the tip on acupuncture too, I'd done a few sessions earlier last year, but then had another miscarriage and sort of forgot about it. I did find it relaxing and liked the lady I went to though, so will reach out and hope she can fit me in sometime soon. @Fletchasketch gentle congratulations to you too... there's nothing I can say that will make the scan less scary, but I have everything crossed that this is your time too xx

@MC8 gentle congratulations. I was where you were a few weeks ago and stayed on the medication and then retested with a digital two days later which was positive. I then had the intralipids about a week after that. Hoping that this is your time.

I'm now 6ish weeks and will be going in for my scan next week which I am frankly terrified of. I have slightly more symptoms than the previous times, so I am hoping that's a good sign, but who knows! As others have recommended, accupuncture has been great. No idea whether it is making any difference, but mentally it makes me feel so much better and the acupuncturist is so knowledgable.

You are doing the right thing - someone asked earlier about accupuncture. It’s something I do regularly and you may want to do to try to keep you calm and support the pregnancy. Also looking into foods that could support might be helpful. You want to keep your body warm and hydrated so lots of soups and broths could help. Really hope this is your month!!

@pagey23 thank you. I've been here so many times before I don't know how to feel - but trying to stay calm and take it one day at a time. I think 10dpo is very early too, this is actually the only cycle I've done it then, the other times I've done 11dpo as the first day... taking it as 10 full days on the meds, and then testing. Really hope you have a lovely, relaxing holiday next month and that it brings you some luck in your next cycle. x

@MC8congrats on your positive! I really hope it all works out with you. I would go back on personally (but I’m no doctor!). I’m sure two days won’t hurt and gets you through until Monday when you can speak to the nurses. I always thought checking at 10 DPO was quite early myself and the months where I’m feeling more optimistic I want to carry on taking the meds, particularly progesterone! Good luck 😉

Hey everyone, sorry I've been so silent on this thread - I feel I've been retreating into myself over the last few months and finding it hard to keep up with everything, but I have been thinking of you all.

I can't remember where I left things, but in the Spring I had my first miscarriage under Dr S (8th total). Tests came back genetically normal, so I guess the only thing he could say was the protocol needed tweaking - they added in hydroxy and upped pred. from 20mg to 25mg. (I'd done 2 x rounds of Humira prior to starting)

I'm now on my 2nd cycle with this, got a negative test on 10dpo, but continued taking the meds that day anyway. 11dpo another negative test so stopped the meds. But then 12dpo (this morning) got a very faint positive.... so thinking of starting them again, keeping testing and contacting CRP on monday for intralipids if still positive?! What would you guys do?

This whole thing of being in constant limbo really messes with your head. We had decided to skip the next cycle if this was negative as my partner is away for the most of October and we've just both found it all so stressful....

It's SO confusing how different Drs have wildly differing opinions - and puts us in such a hard position wondering whether we are doing the right thing when we are already so vulnerable. When I was with the NHS recurrent miscarriage clinic my consultant completely refused to refer me to Tommy's as he disagreed so strongly with what they are doing - i never really go the reasons why, but I feel he was more aligned with Dr S's approach as my protocol with them was pred (10mg only), fragmin, progesterone & aspirin - all from the first date of positive test, although he said he would have wanted to start them earlier, but was unable to do so under NHS guidelines.

Sorry I haven't caught up with everyone individually, sending love to you all x

@Rainbowchaser87 thank you so much, that's really kind of you to say. I really hope you get your miracle soon hun xxx

@Rainbowchaser87 thank you so much, that's really kind of you to say. I really hope you get your miracle soon hun xxx

hey ladies,

hope you're all well all things considering. Just returned from my trip to south italy and it was truly lovely to get away. Its hard to fully get into things and relax but it was nice to not be tracking and TTC for a week. I am still so triggered by all the family's on their holidays as I just can't wait to have that and still so scared that i may never have that. Had my catch up appointment with Kings regarding FET - so annoying but i need a nurses consultation before we can proceed and the earlier appointment is the 28th october :( so i am guessing we won't be doing a transfer in October. Just got to get my head around it as was so focused on getting back from holiday and cracking on.

@Hopeandfaith1990 that is so interesting about the consultant saying hydroxy effects implantation - i asked my consultant today and they said they can't prove either way. Are you going to talk to NHS clinic? let me know if you find any material too on this.

@Objectiontime congrats on the half way point, rooting for you. :)

Sorry to hear its been a long 6 months @pagey23 - that is mad they don't tell you that. Did you need to go back for another consultation after 3 months?

Hope all goes well in Greece @SWMum9

love to everyone i have missed

Hi all, just booked my cycle 7 intralipid for next week… 🫩🫠 I decided against super ovulation this month as I’m quite busy at work and also come down with the flu so I’m not optimistic!! Next month should be better as I’ll be in Thailand when im ovulating. I only ever get pregnant when I’m on holiday!!

spoke to Geraldine on the phone and she mentioned that after 6 months of intralipids you are meant to take a 1 month break because of the pred. I didn’t know that - thankfully I did do that anyway but no one told me that - pretty poor from them… I thought I would flag though just in case others didn’t know that

Hi everyone! Just jumping in! In the same shoes. I am on complex protocol with prof. Shehata and waiting for my miracle.
@Objectiontime soo good to hear about your wonderful news! We have been speaking in the previous thread! Congratulations darling ❤️🙏🏽

@Hopeandfaith1990 I hope so re my friend but of course I so get where she is at but it is sad. Yes p, not sure about the pred thing. It's like you say, experts have so many different opinions on when to start taking it and I completely get the reasons Dr S has for wanting ladies to take it from ovulation. I just wonder, with my very early losses, before my immune tests and results, the pregnancies seemed to start okay and then failed at 5 weeks to the day, apart from my first MMC loss, so I wonder, if I had taken the pred from the day I got my positive tests, if it would have made the difference. Not sure if my doctor would have wanted me on pred from ovulation if I could have had the intralipids. Finding out I couldn't have them did seem to change his mind about when I should start the pred. Then there's our friend Gizmo, who didnt get her pred till after the positive test this time so it just goes to show I guess. Hydroxi was never mentioned to me, despite my doc saying my results were pretty dire. I hope you feel better without it and that it makes the difference for you. Xxx

Oh @Hopeandfaith1990 how horribly confusing. I hate all the differing opinions and we're stuck in the middle not knowing what will work and what won't (the professionals prob don't know really either...). It's a bit concerning what she said about the Hydroxy...I'm on it this time but wasn't last time. What do you think you'll do, see what another consultant thinks? I hate this for you because now you're left feeling unsure of what to do. Sending you love ❤️

@SWMum9 Good luck in Greece!

Isn’t it just. Feel like I can’t ever get the balance right. Hmmm I wonder if it could be the hydroxy??

we are going to IVF Serum. I haven’t had a hysterocopy however if they find anything on the scan in Greece they will do one the next day.

here is the fb group - www.facebook.com/share/g/16BdcyemFQ/?mibextid=wwXIfr

Hi love, glad you had your follow up. It’s really overwhelming that all the information is different. I haven’t started taking the hydroxychloroquine again… since I’ve stopped taking it I haven’t had the irregular bleeding. I’ll see this month if I get a positive ovulation test again.

I didn’t conceive this cycle with my cycle back to normal but we head to Greece next week for some further tests so hopefully will know more then.

I’ve been reading today on the fb group that the protocol can actually hinder implantation? Which feels confusing. Pre protocol I had 2 pregnancies in 4 months.. now nothing for 10 months

Thank you and I'm 20 weeks xx

@Objectiontime I hope you are well 💞 How many weeks are you now!?

@pagey23 A warm welcome to the place no one wants to be! Firstly big big hugs, I am so sorry it hasn't worked for you yet, its a bit soul destroying isn't it...but like the others have said, it can unfortunately still take time and everything has to be right, a good quality egg etc etc. I would definitely consider Superovulation but do be prepared it can still be a long journey, I think they say their highest success rate is Cycles 4-6. I liked it because it wasn't toooo invasive, it boosted my chances and took the stress out of planning. However it did take a cycle or two for me to work out the correct letrozole dosage and when to go for the scan which obviously all costs! But if you have conceived previously, I personally found it a good intermediary stepping stone to IVF but obviously everyone's journeys are so unique and personal, we can only offer our personal experiences! There's plenty of ladies here to help, console and listen - we all know what this is like and I found it such a huge help. Lots of love to you💗

Hi all, just reading through what has been said recently on here. I have been away for a while as I am constantly tired so I fall asleep early. I am obviously very grateful to be pregnant so i am not complaining.
A couple of things i wanted to mention though. On conception time, this pregnancy actually took my 7 cycles to conceive and every month I was on and off the pred. I am allergic to the intralipids so I couldn't have them and admittedly I didn't have to have other medication apart from low dose aspirin (which I feel like I've been taking for a lifetime!) but I guess what I'm saying is dont give up if it's taking a while. It can do so for anyone, immune issues or not. There is a lot of luck involved and obviously, like all of you, I was timing everything as carefully as possible so I knew when to start the pred. I will say that if this pregnancy does finally work out I may or may not decide to try for another but I may well try taking the pred from a positive test rather than from ovulation and see how it goes. Not that i am advocating for doing things that way but i am not sure i would want to be on and off the pred for several months again.

On the subject of others announcing, I get that. I've obviously been there. When I had my first loss, an MMC, a close friend had had exactly the same thing happen to her about a month before. She doesnt have immune issues but she has not had a successful pregnancy yet and is no longer speaking to me because of my current pregnancy. So sad but goodness I get it. Such a difficult thing to negotiate.

I hope all of you who are waiting have success soon, whether with IVF or otherwise. We all deserve it and my heart goes out to those who are struggling mentally with the journey. I have been in the dark corners and cried at announcements of others and my own losses and so i just wanted to send you all love and hope xx

@pagey23hi, I am just jumping in here hope you don’t mind but have you tried Acupuncture? It really helped me with my stress and get pregnant in the past. I would go a couple of times before ovulation. I felt so relaxed after the sessions and optimistic! I did that after 3 years when I was not getting pregnant at all! After a few months I got pregnant naturally unfortunately I miscarried but managed to get pregnant again so it does help! Unfortunately all
my pregnancies for my second child ended up in a miscarriages but with the right treatment on the side it could work for you 😊(I was not under Dr S treatment plan at the time!)

Gosh… I could have written that message myself. I manage a team of 7 and it’s just hectic all the time, v high pressure in front of clients, on stage presenting etc. I’ve spent my weekend working and at the same time considering if I can quit so I can focus on myself but I know that’s unrealistic 😂 my sector is super niche though so jobs don’t come up that often. Have you tried reiki? For me I think the best option is a well-timed holiday. Feels like now we are always timing our holidays around my cycles haha! I haven’t heard this debate before but I’ll look it up and do some research - thanks. I’ve been a bit weak to be honest and just done whatever Dr S has suggested so far