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
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

Hopeandfaith1990 - Yes I get you there. I didnt have IVF but this pregnancy did take me a few months to conceive and I was on and off the steroids so I am looking like a balloon at the moment. My face is huge!

Thank you xx

im wondering whether to have a month off and see whether I don’t spit during ‘ovulation’ then. I always had EWCM before the protocol and now don’t. So I feel like it’s making me doubt my own body.

It's hard to decide isnt it. You kind of feel that a month off is a wasted month but sometimes I think you do have to lose a penny to gain a pound so to speak x

after a year of taking the steroids lipids hydroxy and not getting pregnant I stopped taking it all, we then went to ivf so took it then pre planned it just all got too much and I wasn’t getting pregnant so I had a big long break I honestly think that break did me better than anything.
@Objectiontime if i was offered a test before cutting down I’d definitely take it Ive already taken over the 12 weeks anyway as they changed my dates so still taking 25 mg at 13 weeks lol told the dr today he just laughed wasn’t bothered. Im going for my intralipids tomorrow getting one more in before I go for my stitch thought it will be good to try and keep things as calm in there as I can while they drive a needle through my cervix. Id be ok if they were knocking me out it’s the spinal I hate but they won’t knock me out I’ve asked I’ll just be glad to get in and hopefully we can get past 15 weeks with a heart beat.
@Jecca88 @Hopeandfaith1990 how are those holidays hope you both are having a relaxing lovely time xxxx

Those of you that have taken a break from the protocol…

Did it take a while for the hydroxy to build up again? That’s what I’m worried about if I break. Or do I stick on that one daily and just drop the pred at ovulation? So hard to know.

a friend of a friend got pregnant month 2 on the protocol so I had high hopes for myself 😆

@SWMum9 i dropped the hydroxy as well but I was just so fed up and heartbroken with the whole thing I just couldn’t get any more meds down my throat. Do u get any side effects off hydroxy? You could just keep taking the hydroxy, as soon as I unexpectedly found out I was pregnant I started it all up again and I guess time will tell if it has been enough. I did it all properly with the ivf got everything in properly and I lost that one at 10 weeks so that’s probably the reason I gave up xxx I’m so sorry you are going through all this it’s so hard xxx

So sorry to hear about your experience. It’s all so rubbish isn’t it. Eveything crossed for you this time.

And yes! With the supplements they suggest too im taking so many tablets that ive stopped them for the last few days as i kept gagging trying to get them down me

Yes I should be just over thirteen weeks when we get the results back so I will see what they say. The stitch sounds most unpleasant but i guess if it is needed then no choice . I know a lot of ladies have them. Fingers crossed we move forward successfully. No reason why not I say xxx

@SWMum9 I really feel you...its a tough long slog. Its really hard when it happens for others straight away... I had 3 months without Superovulation, felt a failure, 3 months with Superovulation which ended in ectopic. It was devastating but then I had to have 3 months off because of Methotrexate and actually having that break was the best thing for me even though I desperately didn't want too but it actually gave me a rest from everything for the first time in 2.5yrs - it's all mentally and emotionally draining. Then it took a further 3 months. It's just so hard when you just don't know what will happen. Just so you know it can still be a journey even when you're on the meds...I was expecting it to be quick and the magic answer.... Whatever you decide, we'll all be here for you!

In my news, I just got my new plan and he's added Hydroxy this time...please what are your experiences with it? Makes me feel a bit like my body is failing me further (stupid I know) but so frustrating when my friends just get pregnant, I would love to experience that. The thought of all the meds has made me so anxious again (ultimately I know its my decision to do this but still sucks right!) Also has anyone ever successfully said no to intralipids!? I really don't want them but they have a way of making you unable to say no...

Lots of love to you all 💕

Hi @Deerdancer34 I've now been on Hydroxy for six weeks and other than an upset stomach for a day or so I've had no effects whatsoever. I take it at lunchtime with the rest of my supplements. I would also quite like to say no to intralipids, but it wasn't suggested as optional to me either! Fingers crossed that the hydroxy makes the difference!

Interestingly, I saw Katherine Ryan's Tiktok on her three pregnancies under an immune protocol and she's taken a slightly different approach each time which made me feel a bit more relaxed about all the options. Here's the link in case it's of interest www.tiktok.com/@kathbum/video/7521037381848370454?lang=en-GB

Brilliant TikTok from Katharine Ryan - thank you so much for sharing.

Wishing all the best to everyone on this thread...

@Fletchasketch Thank you that's really reassuring! Thank you for that tik tok too - how did she manage to find a clinic to do the medications she wanted? I get the feeling you can't really pick and choose the meds at CRP, although I'm gong to try 😅

Hi all. I’m due to take my first trigger shot tomorrow night and had my first intralipid on Friday 🤞.

I wanted to ask what your guys experience with intralipids are? I’ve heard such mixed things and they are going to drain us financially!! Apparently Prof Quenby said you might as well inject mayonnaise… but I don’t want to not do it if it’s going to get me a healthy baby!

@Morgan236 My consultant wanted me to have prednisone and intralipids but I couldn't have them because if an ingredient allergy so I have just had the prednisone, together with progesterone, aspirin and the usual collection of vitamins. Currently just over 10.5 weeks and baby doing well so far but I do know someone who had lost six pregnancies and her immune test results showed that intralipids alongpe would work for her. They did and she had a healthy baby boy. I think it is, unfortunately, very difficult to say yes or bo to these things,. Guess you have to do what you feel is right for you and what you can manage financially.

@Objectiontimethank you and congratulations ❤️. I know if I don’t do it and have another loss I will blame myself for not having the intralipids. Going to stick to them for maybe 2 cycles and then I’ll need to think. I did see a place called Cherish in Sutton Coldfield offers them for half the price xx

@Morgan236 It's so hard isn't it, that's where I feel a bit trapped...I wish there were 2 of me and I could do one of me with intralipids and 1 without! I still feel a bit sceptical about it, as well as the cost but then I couldn't face another loss... I did it all the first time, I will let you know what Dr S says for this time because I'm going to ask if I can try without. I feel really scared asking him which annoys me when I'm the one paying..!? Although ultimately, he probably wouldnt know what would work and what wouldn't and is saying this is my advice, take it or leave it... With Cherish, can you just ask for them to be done? Does anyone know anywhere near London that offers them cheaper!? Good luck for this cycle 🤞 xx

@Deerdancer34honestly if we could do a sliding doors moment to see what works that would be ideal 😂.
I get what you mean, I feel scared to ask him if I could go without or go somewhere cheaper for them. How many rounds have you tried with intralipids?
Yes you can! I’ve seen quite a few people say they chose to go there for intralipids alone due to it being £200, and then having everything else done through Shehata… so he must be okay with it! I’ll keep an eye out for anywhere that does then near London. Good luck to you too 💕

@Morgan236 oh my goodness, I would love that!
I did 10 rounds of intralipids over 1.5yrs (I had an ectopic so had to break with TTC) before I conceived my daughter - who knows which bit of the treatment worked... I was also annoyed because when I started, intralipids where only until 16weeks but then they've upped it to 20 weeks... But I closed my eyes and just thought, I'm doing everything because I was in total and utter despair. I don't really feel like they are a money making machine buuut at the same time they don't seem to be too open to you challenging them.
Thank you for the info, I might have a look round! Although I just got my report back & it says IVIG would be the most effective drug but I know Dr S doesn't usually do that because its sooo much more expensive! We'll see, I see him on Wednesday.

Much love to all 💕

Hey Ladies,

Back from our holiday down on the south coast and enjoyed the break. My chemical pregnancy bleed happened the day before we left. I am pretty upset it happened, but also maybe put it down to chromosomes not working out and so going ahead with the ivf and pgta testing will be the right choice for us. Got our nurse consultation this week and baseline scan on monday next week - all going well - i hope we can start beg of august.

i do find it strange how they insist on the Intralipids in the CRP, however Dr S NHS practice at St Helier they can't offer that and he still has a very high success rate with the NHS patients. I think if the next pregnancy doesn't go to plan - i may look at a more affordable clinic where you can just get steroids, hydroxy and support, £400 a month plus £100 quid worth of meds for TTC is pretty expensive. I have had three miscarriages with CRP and i have done the intralipids religiously - so i don't have massive faith in them.

@Gizmo1983 so happy for your news on NIPT and reaching 13 weeks, what a milestone. Thinking of you and hoping the migraines subside soon. We scattered some of my dogs Archies ashes last week in cornwall on the beach and it was so lovely and peaceful and defo helped. Still cry for him everyday.

@Hopeandfaith1990 how is spain going?

@Objectiontime happy for your news, great milestones to reach :)

@Fletchasketch how did the first intralipid's go?

@Jecca88 So glad to hear you had a nice break, it makes such a difference doesn't it. I am sorry about the chemical though- no matter how much you were expecting it, it's so hard to see a positive test just to have it taken away. I have my appointment booked in for the intralipids this Friday, right before we go away. Like you, I am not overly convinced and frustrated that I have to take hours out of my day and £££ onto my credit card. It will be interesting to hear if anyone has any luck persuading Dr Shehata that they don't need them.

@Morgan236 @Deerdancer34 I had a quick check using ChatGPT and it looks like there's a place called the Fertility Pharmacy who will provide intralipids at home. They are still £375 though so you're not saving much. Good luck :).

@Jecca88 Wishing you all the best for your appointments, keep us updated 💖

@Fletchasketch This is amazing, thank you so much! Even though its still quite expensive, it would take out the travel and being away from my daughter which I was feeling sick about. I have also emailed some clinics in London so will update here if they are helpful to anyone. I can't believe intralipids are now £400, they were £360 when I first went and that was bad enough... I imagine they must be able to do a prescription for intralipids at CRP?
Good luck for Friday!! Make sure you recline the chair & put your feet up...that was the best bit about them 😄

Thank you, a king way to go but we dare to be hopeful:) I agree with you. That makes good sense. Definitely worth shopping around as such though. X

@Deerdancer34 I think I said before that I was supposed to have pred and intralipids but couldn't have the intralipids due to allergies but actually IVIG came out as the tip treatment for me too. I just dont realky mention it as there was no way I was going to be able to afford them, especially as you have to have one before a pregnancy is even confirmed!!

@Jecca88 So glad you had a lovely break.
I think with chemical bleeds, even when we are expecting them are always incredibly disappointing so my sympathies on that, been there twice myself. This private route is very expensive generally but I do get the impression that CRP are particularly pricey, partly because they seem very insistent on things like the regular scans. Thank you for your kind words. Good to get so much further than I have before. A long way to go but tentatively hopeful xxx

@Objectiontime It's really helpful to know that, thank you. I would rather just do the meds without any infusions. Gathering my nerve to ask...🤞 Completely agree re scans...My EPU scanned me at 6 and 8 weeks but CRP insisted I have 6 and 8 week scans with them as well....it was a bit ridiculous!
I'm so thrilled you have got to the 10 week mark, its such a milestone 💕 Keep us updated 💖