Immune/NK cells pred thread #31

@star2022 yes I also read about the monitoring. Though one of the doctors in my clinic advised on the amount (75mg) but didn’t say anything about monitoring. My clinic don’t really so monitoring full stop! Lol. So I was winging it slightly! I started off just taking 25mg for a week or so then upped to 50 and then higher, just in case it had any funny effects.

I also thought I’d share something I learned this week about intralipids in case it’s useful to anyone. My doctor prescribed me 500ml on day 4-9 of my period cycle before having a frozen transfer at around day 18. I asked Dr Thum at the Lister for a second opinion (as that’s where I have recently been getting advice following my immune diagnosis and my current clinic not being that great) and he said to make sure the 500ml intralipid isn’t diluted as a lot of clinics dilute it, I checked and my clinic do 100ml and 400ml saline so I’m going to go to him to do the 500 pure instead. He also said the infusion had to happen 1-5 days before transfer and not so early as my clinic advised.

We shall see. My test results showed IVIG would be 8% more effective but at £2k a pop on a frozen embryo (that could not thaw properly) and that is not genetically tested, it feels risky to spend that much money. Hard decisions all these things. Want to give myself the best chances but also don’t want to pour money down a drain constantly.

@Ems123456789 thanks for the info re DHEA, I have read so much about them being great before egg collection but only if you have low testosterone and the need for monitoring in case it goes too high. I will definitely keep that in mind if this process just doesn't work for me as it could just be that too.

Hi @Zest11 Hope you're ok, i'm glad the bleeding has stopped - is there any chance it could have been implantation? and maybe the negative was too soon. Will you be testing again? I really do hope it turns around for you. Yeah its interesting about testosterone, like my bloods at <0.4 came back as 'normal' from my GP as anything over 0 is fine according to them, but everything i've read is saying low testosterone isn't good for fertility. I guess I'm gonna just have to see what happens with SO, think we'll do it for the 6 months as suggested and then see. I just feel like these months just pass by and before I know it another year has gone still being in the same shitty boat.

@VenusStarr Feeling the same as you right now, a bit glum and just fearful of it not working, i think i'm just trying to protect myself. I'm even having to plan my social life around these weeks like not booking anything around test date in case its bad news and i'm a mess. It really does take over doesn't it..

@RJayne I'm so so sorry to hear this, I did also raise this a few pages back whether its worth doing a repeat test. I also wondered whether too low of an immune system has the opposite effect? I keep forgetting to ask that in my consultations. Has dr s suggested anything else as to why this is happening? How many cycles have you tried? I really hope he has a solution for you I can't imagine how hard it must be x

Hi all,

I hope you’re all managing to find time in the lovely sunshine today ☀️

As many / most of us are with Dr Shehata, I wondered if any of you had been re-tested to see if the medication is working?
Following our previous miscarriage, he said they normally do a repeat blood test after the Humira injections but he said I didn’t need one as he knew they would work. I’ve miscarried again since so not too sure if I’m sold…

I’m starting to question if all the meds (pred, hydrox, aspirin, fragmin, intralipds) I’m on are actually making an impact.
Is there a way of finding out? Like a pre and post blood test?

Sorry to hear this @Zest11
it’s such a challenging process when you are told your embryo is great quality and you feel like you’ve done all the things. another 4 days til test date so we will hold out hope for you.

@Ems123456789 I did but don't think it achieved anything. I went mostly gluten free, hardly any caffeine, and have eaten lots of protein in the last 6 months or so. I sort of felt I needed to know I had done everything!

@star2022 I have wondered the exact same thing about dheas. My testosterone is something like 0.3 too so I have wondered. In fact, I shipped some dhea over from the us but was too scared to unwrap it so it has remained hidden in my wardrobe for around 6 months. Let me know what you uncover...

@VenusStarr I'm sorry you're not feeling hopeful. It's a grim feeling isn't it. A hyfosy/hyfosy is a good idea as it at least gives everything a good flush out!

Not feeling so optimistic here. I've tested and it's negative. The blood didn't turn into anything so I guess the progesterone held everything in place. I'm meant to test on Sunday but I doubt much will have changed since then. The embryo was "top quality" apparently, not that that means anything, clearly!

@star2022 i took DHEA for 3 months before my last egg collection. That collection I did yield better results and it was only the DHEA and Chinese herbs that I added in.
towards the end of the 3 months it was giving me greasy skin so I did taper down the amount.

@comingsoon786110 I take symprove, it’s very good for gut health. I rarely get bloated or a bad stomach. It’s much better than tablet probiotics in my opinion. Though I can’t credit it for any fertility success yet.

@VenusStarr perfect, ill be off of it for 6 weeks or so before trying again depending on how my hysterscopy goes.

Has anyone tried probiotics before to help with gut health? Also, thinking to try a few things for vaginal care/health that I have seen a few women on here talk about such as symprove, canesflor vaginal pessaries (this replaces the god bacteria) or balance activ bv pessaries (this improves the pH balance and helps the good bacteria thrive). I think the active ingredient is lactobacillus.

It has come to the point where I am willing to try literally ANYTHING.

@VenusStarr What dpo are you today? It's still so early, don't give up just yet. I've officially started my pred this morning, I had ovulation pains most of monday night and tuesday so I thought best to leave it another day in case I hadn't quite ovulated yesterday.

Does anyone know much about DHEA? And whether dr s lets you take it alongside the protocol? I recently came across low testosterone in women contributing to infertility so I had mine checked with my GP and it came back at <0.4. I'm now wondering if this is also an issue for me that needs addressing 🥴

@Ems123456789 I know the feeling of feeling too restricted but this month I have made a conscious effort of eating healthier but not restricting sugar gluten etc. I just eat better in general and have more fruit and veg so hoping that does something lol

@Zest11 ahh thanks haha, lets hope i'm actually explaining them correctly 😂 How are you doing? thinking of you!

@VenusStarr so glad to hear you can get squeezed in next month, lets hope it doesn't clash with the surgery, and an even better idea lets hope you wont need it next month! 🍀

@comingsoon786110 I'm sorry i dont if you'll need the loading dose again, i'm assuming you shouldn't if its only been 6 weeks but worth asking to make sure.

@Privatemedical246 good luck for your apt!

Hi all just came across this study published just last week regarding steroid use at 10mg and recurrent implantation failure in IVF. It's interesting because my ivf clinic was so adamant on the use of only 10mg steroid for my FET last year after 3 failed transfers and this study shows there was no difference in birth rates whether someone with recurrent implantation failure takes steroids at 10mg or not. I wonder if this will change their protocols 🤔 I also wish there was a study like this to see the effects of 25mg as i know dr s always says 10mg wouldn't do anything.. Anyway heres the study if anyone wants a read (yes the geek in me loves stuff like this 😭)

https://pubmed.ncbi.nlm.nih.gov/37129654/

@Privatemedical246 Yeh I know soo annoying! Literally called this afternoon again and it was the same thing. 'Will call you back, there is a pile of other cases we just have to get through first'.

Also had an email back from the CERM trial and unfortunately they are no longer taking on any patients and have ended the trial early so cannot join that.

Literally had 4 baby announcements basically over the bank holiday weekend. Everyone seems to be having 2023 except me! GRRRR. There are some good days and some really bad days in this journey. It's too much emotion to handle.

I am looking forward to not trying for a few months though and just getting on with the summer and super happy to be off the meds. Does anyone know, if I want to start trying a particular month, how many weeks beforehand shall I start on my HCQ again? Also, if I am off of it for about 6 weeks, when I start back do I have to take the loading dose again?

I wondered if anyone has modified their diet much in light of immune issues? My acupuncturist mentioned giving up gluten, sugar and diary. I’m thinking about if for my next transfer but also feel frustrated sometimes at giving up so many things. Already given up the booze 99% of the time and will be curbing my caffeine as I normally do before treatment rounds.

@comingsoon786110 that's so frustrating they don't get back to you. I've had similar even privately. @VenusStarr hopefully the hycosy will give you some answers whilst your waiting for your DH to recover too.

@VenusStarr oh i see. Hoping for a beautiful BFP for you this month 😙 thats good about the hyfosy and hopefully you get some answers!

Did you biopsy and hysterscopy give you any answers?

I made my 3rd phone call to RMC today and they always say they will get back to me but they don't. I think i wont be able to try until August/September time which makes me nervous. Currently in my fertile week but will be using protection.

@comingsoon786110 it does seem that way. The leaflet I got given from nhs mentions killer cells and about having an biopsy whcih hasn't been offered to me so I have contacted my nhs consultant to find out more about this. I was "discharged" but could contact them for repeat progesterone but I'm unsure whether to continue with this every cycle if it clearly isn't working! I really hope Dr S helps me more with it all. Just so impatient! We are going on holiday too this cycle so at least this will help with being distracted whilst waiting but I know my husband would have wanted to try whilst away as it feels more relaxing.

@VenusStarr @Privatemedical246 thank you both very much. Seems as though NHS don't run the necessary tests unless you ask them to which is disappointing. I am going to be requesting this at my next follow-up.

I have also been doing a lot of research over the weekend and will be asking for an endometrial biopsy with histological analysis. After this will be arranging my follow up with Dr S due to my 6th miscarriage. Hubby wants to try this month COMPLETELY naturally but don't think I will. I keep having to rearrange my hysteroscopy because I'm pregnant and then end up miscarrying anyway which has caused such a big delay. This time I just want to get it out the way so I can rule out my acurate womb being an issue or if there is any adhesions/ polyps etc causing the issue.

@VenusStarr Happy 2WW!! Hope the time flies by for you. Did you have ovulation intralipids this month?

@comingsoon786110 the rmc consultant mentioned it but tbh we were already about to have blood tests to confirm the deafness gene. And so when we had the call with the genetic team we explained our situation and they had to get permission from the lead consultant who agreed to test for all genetic conditions. But It was written in the leaflet we were given when we had our 3rd miscarriage and was referred to the rmc on the nhs so I suspect you should be entitled to it? Maybe need to push again?

@Privatemedical246 i hope all goes well with your appt.

Curious, how did you get NHS to do karotyping for you?

My RMC didn't offer me any sort of options like this. They didn't even offer to do any blood tests on my partner. Im on their case at the moment for a hysterscopy...

@Zest11 thank you that's really helpful. My appointment is next weds. Can't come quick enough. We're you under the care of Dr S for your first child? I'm the same I know something isn't right for us to be miscarriaging so early each time. My son has the same genetic issue I have and is perfectly healthy otherwise (deafness). NHS have basically said you should have another healthy child within 2 years. Well it's been 2 years since I first fell pregnant after my son. I'm just desperate to have a sibling for him.

Good luck for testing day. Fingers crossed for you!