Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

@HoldingOn2Hope very frustrating 😩. I'm feeling really low today just thinking about it all but also probably because my period should be starting soon. I just hate that I have to take injections now too gonal f and GCSF on top of everything. I didn't think it was going to be this difficult trying to have a baby.
I can't even imagine how you must have felt after finally getting pregnant after 9 attempts only to end in mc☹️. Did they say why that happened?

What will you do after your 3rd SO if it doesn't work out?
I did find that they missed my ovulation on 2-3 occasions which was really annoying! But by the time I got to 5th and 6th SO I was only producing 1 follicle when initially I was responding well to Letrozole with 4-5 follicles 🤷🏽‍♀️
For this month they reduced the Letrozole and adding the gonal-f. If after all this I end up with 1 follicle again at the scan then thats it I wont be doing this again.

What is dhea and royal jelly?🤷🏽‍♀️

I'm the same just fed up but like you said that little voice keeps whispering in my ear too 😂

Has anyone had any luck with co enzyme 10 and if so could you recommend one that is not too expensive but suitable for vegetarians. I buy from Holland and barrat but they only last 1 month and costs me £35

@Sophi81 thanks for all the info, wow thats alot! Do you think its the super ovulation that costs so much? I had worked out about 4k for tests, then £1500 for scans and say £500 a month for meds? I wouldnt need superovulation. So i was thinking 1 try would be about 8k. And the issue is if it doesnt work then i was thinking
another £1500 for scans £500 for meds so £3500-4000 each try. If i just had the usual intralips pred and hydroxy etc. i guess you have been prescribed alot more? Obvs i have no
idea what i would be prescribed yet either.

If you were me would you wait to be seen on nhs and give that a go first? I could be waiting another 6-8 months.. or would you recommend seeing him privately as you are happy with his clinic?

Hi all, I just wanted to offer some encouragement for those of you going through IVF. It's so hard but hang in there if you can.

Just reading what people have been saying about SO and I am confused. Is it an alternative to clomid? Are you trying to ovulate more than 1 egg? Or is it something to do with maturing the egg? I’d never heard of it before ivf and wondering if it’s something that could help us. It sounds like the drugs are similar?

@InvisibleDreamer yes SO is similar to Clomid I believe. It aims to mature more than one egg to give you a better chance at conceiving. You take letrozole pills from about 5 days into your cycle, then a scan with Dr Shehata around day 11 or 12 to check if you have responded, and if you have you take a trigger injection to ovulate and then have timed intercourse.

We only did it once and got pregnant but had a chromosomal miscarriage. We had struggled to fall pregnant naturally so SO did help us. We moved onto IVF so I could do PGTA testing as I’m in my late 30’s and didn’t really have time to waste.

@Sophi81 I have a couple of embryos stored so may use 1 to transfer if this SO doesn't work.
Dhea is a supplement to increase egg quality but can only be prescribe, Argc prescribed it to me. Royal jelly is also meant to help with ovulation, I took it before ivf and had a good number of eggs collected and fertilised.

I asked about the gscf injections but was told I didn't need them, so many of you seem to be on them I feel I should be too 😬

@Hayley220 hi, I wouldn't say SO costs that much if it works the first to third time. Especially if you compare the costs to IVF. But it can become expensive if you end up having lots of SO cycles and no pregnancy result. When I had my first treatment back in aug 2020 I only had one SO and fell pregnant so that was probably about £900 which included meds, scan, intralipids and SO which to me wasn't too bad. At that time I was only on the basic meds like pred and Cyclogest. So by the time I was pregnant I had already spent 4-5k which includes the initial tests. After that you have regular scans, intralipids, meds etc until 12-16 weeks. They discharged me at 16 weeks and all that cost around 5k also. Plus I did have some extras with the professor at crp who does the 12 week dating scan etc so that was in that cost. There were certain meds my GP started prescribing to me like Cyclogest so they were free for me in the end which really helped.

What I have realised is that you can't really prepare or plan for treatment costs as I thought it would be the same this time around but it hasn't worked out that way. Plus I have noticed that CRP prices have increased quite a lot with everything so that's an added cost. I was thinking ivf will only cost me 7k but after speaking to a few people on here some have spent up to and over 20k 😬.

If you are not doing SO then i don't think it will cost you 3-4K. For meds/intralipids and scans/appointment maybe 1k unless I've forgotten something 🤷🏽‍♀️. Obviously initial tests will be around 4K. But as I said you wont know what you require or what the costs will be until crp have done all the tests and prepare a plan for you.

So this time around it's cost me more as the prices have gone up and also I'm not pregnant after 6 cycles. Plus they have put me on basically every medication now to see if it works 🤷🏽‍♀️. Plus The injections are quite costly. But some medications my GP has agreed to give to me so again it's cheaper for me to get through my GP.

I went to see Dr S privately because I was 38 at the time so didn't want to wait around. Plus it was Covid and lockdowns so nhs was limiting or cancelling all my appointments which was distressing for me. It's really up to you if you feel you can wait to see him time wise and financially wise. I actually did not know anything about crp clinic. I just randomly googled for miscarriage clinic as I felt like I needed a second opinion as I had just had 3 losses on NHS. And within 3 months of contacting them I was pregnant so I would definitely recommend them. I wasn't prepared for how much it would cost and to be honest I didn't really go with a positive view as I was drained from my miscarriages. Because of my previous experience I decided to go private again. I am now 41 and been trying since Jan and it doesn't seem to be working this time.

The only thing I'm not happy about this time is I have only seen Dr S once at my first visit in Jan. Not sure if anyone else has been issues with not being able to see him also.

@HoldingOn2Hope I see. Fingers crossed for you SO works this time 🤞🏼

I'm still waiting for my period to start before I can start again. I'm already on day 31 🤷🏽‍♀️

I'm not keen on being on GCSF as it's costly. I was put on this bcos my previous pregnancy I had IUGR and so they wanted me to take hydroxy this time around. Hydroxy caused my hair to fall out so I stopped taking it so they put me on GCSF.

@Ifitistobesaid is there a reason then that people do super ovulation rather than clomid? I’ve always been disappointed I’ve never been offered clomid but I know many doctors won’t give it to women who already ovulate as they worry about multiple pregnancies/births. I’m surprised doctors allow people to do super ovulation unless this is also only for people with ovulation issues?

Good luck with the IVF & PGTA. It does give you reassurance that at least you are eliminating some of the possible causes of implantation failure or miscarriage and hopefully reducing time to a successful pregnancy.

@InvisibleDreamer I don’t know what the difference is between them really, I have heard letrozole is better for the lining so that may be why Dr S uses it. There is a risk of a multiple pregnancy but I think the aim is to mature around two eggs, not loads. If you were over responding that would be picked up at the monitoring scan.

IVF is tough going but we were lucky to get some euploid embryos. Given the amount of meds I’m on from Dr S it would be even harder if we also had to worry about whether the embryo is viable. But obviously even that doesn’t guarantee anything.

Hi, hope everyone is well. We are not ttc right now, but wondered if anyone had had similar. I had a surgical management for mmc in June. I've had 2 normal periods since then. This month, I've done nothing differently, I'm not due on my period for another week and I've had period cramps for the last week. I put it down to ovulation at first but it can't be that still. I'm scared there's still something left inside, could this be possible? My lining was very thick due to all the progesterone which is why I needed the procedure in the first place as I had already passed the pregnancy. It's definitely not pregnancy related as that would be biologically impossible at the minute!! Any advice welcome. It's just bizarre as I'm usually regular and have never had these pains before. They aren't intended pains but feels just like I'm about to come on my period (but every day!!) x

@Ralowi do you have any type of IBS problems? I sometimes get pains like period pains due to digestive issues. Probably worth a visit to GP if it doesn’t go away in case you have some retained tissue.

Does anyone else here struggle with bad PMS? Mine seems to vary year on year but at the moment it seems to be getting worse which just feels like another thing I could really do without! I get really angry a few days before coming on & then feel really low when I’m on beyond just being upset that it’s another month without a positive. I’m aware it’s my hormones making me feel extra weepy but it doesn’t make me feel less crap. Also find every month draining especially with the amount of bleeding I now have. No point to this post just wondering if anyone else can commiserate?

@InvisibleDreamer i totally sympathise and understand. Mine is awful too. It has been for the past few years but since TTC (2 years this week, 2 miscarriages down, 6 SO failed rounds and 2 failed IVF rounds) it’s even worse. I feel hopeless and really lonely. My partner gets frustrated when I’m upset so I just deal with it on my own. I’m so grateful to have this to read. I hope you have a better day tomorrow. I’ve just sobbed as another friend told me she’s 7 weeks having tried for a total of 6 weeks. It’s so hard to hear that and give congrats but I gave it my best then collapsed when I got home. Sending you hugs

I get similar symptoms. I feel angry, depressed, desperate just before, then ok whilst I’m on, just tired, then when it stops I’m to being positive/ looking forward etc. I think it’s definitely PMDD as it’s so extreme but like everything female health wise the Meath industry seems to care very little or offer much support. I think the key is finding what gets you through. I cut out sugar, have tried meditation, crystals and intention setting and I do a gratitude saying every day for what I have. It’s really hard but does help me feel a bit better

Health not Mealth industry

I think balancing blood sugars helps too

Has anyone had shorter/ slightly lighter periods following a D&C? I had an ERPC in April and have had 5 periods since which have all been slightly different to each other but noticeably lighter than my periods before. My first paranoid thought is that it could be Asherman's syndrome but also aware that perhaps and hopefully it's hormones still levelling out although I would have thought it wouldn't have taken this long. I take my bbt and it looks like it's relatively back to normal. Just confused and worried that my period seems to have now changed!

@Grateful03 thanks for your reply. I went through a period when I was much younger of PMDD luckily for me it eventually went away after a few years (no idea why) so I know how truly awful it can be. Things are not as extreme for me right now - when the PMDD started I thought I might actually be bi-polar until I made the link with my cycles. I can’t cope without sugar as I crave it so badly before I come on & I’ve already had to cut a lot out of my diet due to food intolerances but I’m glad you have found some things that help. I just try to tell myself that it will be ok in a few days and try not to let the negative thoughts spiral.

@Mabelledox yes since my third ERPC 18
months ago my periods have been shorter and lighter. I had a saline scan with Dr Shehata’s office and that was clear so they didn’t recommend having a hysteroscopy. My IVF clinic also don’t have any concerns and said my lining thickness looks normal and grew normally in response to the stims and FET medication (though it did take longer to grow on the FET meds). They said if it was scarred it wouldn’t be responding at all so they also don’t think a hysteroscopy is indicated.

We just transferred yesterday so I hope I can trust their advice.

If you have worries I would make an appointment to get it checked out.

@Grateful03 awww it's so sad to hear what you have and are going through. Ive had 6 failed SO's too and wondering if the same will happen if I go down the ivf route 😔. Sending you lots of love ❤️ x

@InvisibleDreamer I don't have any ibs type problems that I am aware of, I do have all the other pms symptoms too (sore boobs, sugar cravings) so i wonder if it's just being dragged out this month. I do want to be tested for scarring after my 3 d&cs and wonder if my gp would refer me or would it need to be under the recurrent miscarriage clinic (who are useless and won't see me till end nov!). I just don't want to try the immune protocol at any point in the future when I'm not 100% sure what state my uterus is in! Although dr s seems convinced it is fine because i had a child almost 5 years ago, a lot has happened since then. I'm also curious over whether I could take a reduced dose of the pred. I've been put on 25mg but the tests show with 10mg my % nk cells would be reduced to 19% and that is without the intralipids on top. I know a higher dose would be more effective but he did say as long as it's under 20% it doesn't matter. X

@Grateful03 I think everyone on here would feel the same, I'm always bitter about friends and family getting pregnant and I don't hide it to my husband. He said I need to be happy for people but I just can't!! X

@Ralowi same here! I just couldn't share the happiness so I just stopped talking to everyone as they would ask the same questions when you having a baby! Why you not had a baby yet! You been married 3 years and no baby? It was horrible. I just stopped talking to everyone and even came off social media as I didn't want to see any updates of a pregnancy or babies. I would cry all the time, I think I had depression. I even stopped talking to family and kept myself in a bubble that just had my husband and that was it. So if tell him how unhappy I was etc

Thanks both. It is so hard. Even the people I know who had recurrent losses are now co stay my posting about it. You’d think they’d know better having been in this position. It’s so isolating. If I’m ever lucky enough to have one I’ll be more sensitive. Just bawled down the phone at the clinic. The post IVF periods/ hormones are the absolute pits. Thanks for your support