Immune/NK cells pred thread #31

Hello @KMG7385 i’m in exactly the same position as you! 12 weeks after 5 miscarriages on the same protocol as you, but with intralipids. Today I started to wean off the pred and it does worry me but I’m telling myself this is the protocol that has worked for so many others. And it’s reassuring to stay on the hydroxy and Cyclogest for longer. @MotherOfShihTzus thank you for sharing your reassuring story ❤️ it’s wonderful to hear of others who have been in our boat before and had success.
@fleur89 hope all is well with you! I also could have written your post earlier too- I’ve also not had any pred side effects and ended up losing 2kg too (and we are the same weight!). Dr Edge was surprised and said she’d expect me to be gaining weight on the pred, but I don’t think it’s an issue as I know I’m eating a lot still and expect to gain weight later on.
I have my 12 week NHS scan tomorrow - very nervous! Despite a good scan a week ago we are primed to expect the worst. And it’s not only the worry of whether the baby will be alive but also the tests for chromosomal abnormalities that adds extra worries. Keep your fingers crossed for me ❤️ xx

@KMG7385 and @fleur89 just wanted to say, I totally remember these feelings on my son - be we weaned off the steroids, intralipids and progesterone as prescribed and had a healthy baby boy x

@fleur89 thank you. That's really helpful. I'm not on intralipids as am NHS but I was wondering the same as you with the progesterone. I'm a bit nervous to just stop it. I'm trying very hard to trust the process it's just hard isn't it.

*20mg prednisone, typo and can't edit

I'm just 9 days behind you @KMG7385 and am on steroids, progesterone and intralipids for high nk cells following the loss of 3 babies last year.

I fully understand how you're feeling, I think we have to trust the process as we've been fortunate for it to be working so far. Around now the placenta takes over so the baby is supported by that rather than relying only on our hormones.

I'm on 20mg progesterone and will begin tapering by 5mg every 5 days from 27 Feb. I'm on 2x progesterone pessaries until 16 weeks, I may continue taking 1 pessary per day for a week or two after as feel a bit worried about a hard stop. I'm on 4-weekly intralipids until 20 weeks.

Hi everyone this is my first time posting but hoping those on this thread can offer some encouragement! I am currently 12 weeks pregnant after 5 miscarriages (4 recurrent) on Dr S's NHS plan of steroids, Hydroxychloroquine, progesterone and aspirin. I am due to start weaning off the steroids but I am petrified it will cause a problem. I have aggressive NK Cells and tested positive for anti nuclear antibodies. Any words of wisdom would be appreciated!

@RumandSpinach and thank you for the congratulations, fingers crossed we make it over the line🤞

@RumandSpinach honestly, the only thing I've had is ad hoc insomnia. Every few nights I'm awake in the early hours for absolutely no reason. After a few days of this it catches up with me and I sleep for 10 hours straight for a few days. I've had no issues with weight gain (I've lost 2kg and didn't need to, am now 49kg), no moon face, no mental health impacts, etc. I too was very worried but it's been totally fine.

Would caveat that I fell pregnant first cycle trying so hadn't been through months of cycling on and off medication prior to this. I'm naturally a very active person, have kept up my gym routine, have a toddler to care for and work full time. So I haven't really had time to sit still and think about how all the meds are affecting me tbh, staying busy and active has probably prevented some of the side effects. I haven't had an insatiable appetite at all, indeed my appetite has decreased due to mild nausea and food aversions. I also haven't felt like I have loads of energy from the steroids, I guess my general lifestyle is quite tiring so I didn't feel this perk of the meds!

I'm pleasantly surprised by how little the steroids have affected me and I hope the same goes for you 💗

@fleur89 congratulations- fingers crossed you are out of the woods and stay there for 30 weeks!

How have you found the pred? The side effects list is pretty scary, psychotic symptoms are listed under common!

MENTS Pregnancy, Live Birth

Hi @RumandSpinach I am currently >10 weeks along under Dr Shehata. My protocol is intralipids pre-ovulation, upon BFP and then monthly through to 20 weeks, plus 20mg prednisone and 2 x progesterone pessaries daily from confirmed ovulation (bbt spike). Still early days but have had 3 good scans so far. Waiting on NIPT results and the 12 week NT scan next. Fingers crossed. Trying not to think about it too much due to previous heartbreak but this is the furthest I've gotten since I had my daughter back in March 2022 (healthy, uncomplicated pregnancy). Dr S thinks my nk cells issue was either triggered by my previous live birth or as a reaction to covid (I didn't catch covid for the first time until after my daughter was born and then had an awful run of it several times in winter 2022/23).

Good luck ttc 🙏 So far treatment is working for me and I hope it works for you too xxx

Anyone ttc with an immune protocol?

I'm with Dr Thum and will start 25mg pred on a bfp.. my results suggest pred or intralipids would work equally well for me but as this will be attempt #5 I think I will do two infusions of intralipids at Cherish to be sure. I don't think I have it in me to try again after this.

I've been patiently waiting for a BFP since November.. I think my uterus is a watched pot now

@MotherOfShihTzus thank you so much ❤️❤️

Last page;

Hi @LuckyNo14 - here's my recent FET protocol with Shehata; hope it helps!

Hi everyone,

I was previously on one of the older threads. Hope everyone is doing well.

Were thinking about a frozen transfer at our clinic but also using the help of Dr S aswell. Would anyone mind sharing their frozen transfer protocol? We’re just so unsure if we can afford it. I have emailed CRP to ask roughly what medications I would need and when they advise intralipids but they’ve said I need to book and pay for a consultation first.

we’re absolutely not doing anything this side of the year as we will need to save up but I’m literally just looking for a rough idea so we can work out how much we need to save.

Thank you so much in advance ❤️

Hi everyone, you seem really knowledgeable on this topic and I’m only just learning about it- can anyone help me understand how immune treatment works?

does it have to be done along with IVF, or can you do it and continue to try naturally?

how long do drs usually say the immune
protocol takes to have an impact on fertility?

thanks so much! I’m looking into this route due to recurrent early losses and Hashimoto’s.

Forgot to add @VenusStarr is testosterone gel something to look into potentially to help embryo quality? I've been reading success stories on it and they seem quite good. Apparently it is different to dhea as that takes 3 months to work but this only needs to be used 2/3 weeks before egg collection, the consultant also said they have a lot of success with it xx

Just an update from me:

After trying 6 months of superovulation with CRP, I stopped in Sept as all 6 failed. We then had a few stressful months so took time out from ttc and this month I decided to get some checks done to see where I stand with amh, AFC so we could try naturally. My scan showed up another 2 polyps in my uterus (after having a hysteroscopy just last year with mr jan 🤦‍♀️ ) so I'm now having to fork out a few grand again to get them removed next week. Just my luck. So, now I'm too scared to try naturally for a bit in case polyps just keep re-occuring after surgery, so I have made the decision to go back to ivf next month to bank some embryos. My AFC has also dropped so much so I think we need to embark on IVF asap.

So I had a consultation today with Care - which was actually the best consultation i've ever had (and i've had a few in my time!) I am a poor responder based on previous ivfs, so she wants to try a cycle where I have testosterone gel from day 6, and wants to incorporate melatonin too along with all the rest clexane, steroids, intralipids basically chucking everything at it. Has anyone heard of success with testosterone gel? She said it can help create better embryos but its different to dhea apparently and the melatonin can increase number? I'm just so scared of going back to ivf again and putting my body through all this, but dh and I have decided this is the last time we try. And it sounds like she is doing an individualised approach which I like so fingers crossed.

Hi everyone I have been in and out this thread but needed a break I hope you are all well xx

Can't quite believe I'm still here on this journey but I noticed you were struggling @VenusStarr so I thought I'd hop on. I am so sorry to hear about your appointment, that must have been really tough to hear. Did you say you were with Create Bham? I had an estrogen priming protocol with them before and it was the only cycle that I had implantation although my egg quality that round was a lot worse (could have been because I'd had an all inclusive holiday with lots of alcohol the month before!) I also developed a polyp that round, which dr datta said could have been due to the estrogen (my lining at transfer was also 14mm!) and this ended up being a chemical for me - possibly because of the polyp but it was my only ever bfp (despite it being an ungraded blast) I've ever had in 4 years so maybe the estrogen helped in some way? Does your lining usually get thick or do you normally struggle? If you struggle, maybe estrogen priming is what you need to try like the others have said. For me, my lining gets thick on its own so I think I need to steer away from estrogen. Have you had your FSH checked?

Sorry to hear about your appointment @VenusStarr did you have your fsh tested before the cycle?
I used melatonin before my last egg collection (and I use it occasionally if I’m struggling to sleep) and I did get a better yield of eggs but I think this is because I also took DHEA and Chinese herbs. Having said that I had 2 embryos from that round and neither worked out for me in the end so I can’t say melatonin was the answer if that makes sense.
what is your next step? Sending you positive thoughts.

@VenusStarr I’m so sorry your consultation didn’t have a positive outlook. If egg quality is the issue then would you consider giving yourself 2-3 months to try supplements such as melatonin first before going for another cycle? I’ve read that it usually takes 3 months to see an improvement in egg quality. I’ve been on Impryl myself which is meant to improve egg quality as well. I know you shouldn’t have it with ubiquinol but I spaced them out (one in the morning and one in the evening). My point is that I think, in my humble opinion, that your strategy should be two-fold:

1. focus on supplements that can improve egg quality. I also took L- arginine before my fresh cycle. Then give them a chance (so a few months) to work

2. look at changes you can incorporate into the stims dosage/type/protocol and discuss with your doctor. I can see that he had some suggestions such as estrogen priming, but I’m not sure whether he discussed other protocol changes with you?

We’re here for you xxx

Hi @VenusStarr and @clhiu - I'm so sorry I can't remember exactly the dose I took but I followed the exact instructions in the it starts with the egg book. I've lent the book to a friend so can't check! I think it was a few days before egg collection (and stop at egg collection. You shouldn't take it for too long as it will mess with your natural sleep cycle! Yes it is supposed to improve egg quality. In my first round we got 1/5 euploid so 20% then in the second round with melatonin we got 4/12 euploid so 33%. I hope it works for you!!

@VenusStarr I'm really sorry to hear about your consultation, it's a terrible blow to be told your egg quality is not good enough, even when you suspect it it's a really difficult one to take because it's the one thing one can do very little about - if true. All these theories about supplements etc...none of it at this point in time seems to have enough scientific evidence to back it. It's even harder to accept when you're in excellent shape and overall health and your cycles are regular and seemingly everything is in great working order with the rest of your reproductive system. It's an especially cruel trick of nature I think, that your eggs shall age much faster than the rest of your reproductive system, which I think is been my issue all along, no problems ovulating, letting embryos implant and carrying a baby seemingly, but the embryos I've been creating have allegedly all been unfit for survival because of (assumed) poor egg quality.
I am so sorry, I really am, but I'm hoping your consultant is wrong there, different consultant will give you very different opinions sometimes and I really do believe there is still hope for you. For starter you have one frozen and you also have 2 more cycles to go in your package so I hope whatever adjustment you're able to do with the next 2 cycles, it will make enough of a difference to bring you success ❤

And thanks for mentioning the Melatonin thing, I never heard of that, but I did some googling after reading your message and it would appear it really can help with quality so I got myself onto an online pharmacy and as @Amy00 suggested I was able to order it in no time a with no bother for 'jetlag'. Since I'm also back focusing on egg quality and dropping the immune stuff, I will try taking that this cycle. @Amy00 can I also ask when did you start it in your cycle and how many days you took it for leading up to EC? I also have 8 x 500mcg Dextamethasone tablets left which my IVF consultant prescribed for egg collection as it can also improve egg quality during the same cycle if started at the beginning right up to ovulation. I don't have enough to take the same amount as I did then (1mg per day for 11 days), but I'm taking one a day of these 8 I have left in this cycle. It probably won't do anything, but worth a shot, plus it'll just go off if I don't use it. I won't be able to get hold of any more after this. @VenusStarr maybe worth mentioning it to your consultant for the next cycle?

Hi @VenusStarr I used melatonin in my second IVF cycle where we went from 5 eggs in the first cycle to 12 eggs in the second (melatonin) cycle. I got it from an online pharmacy, you have to say it's for jet lag and say you are going to a country with I think a 4+ hour time difference. I actually really liked taking it as it helped me sleep!

Good luck xxx