Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

The EPU repeated my bloods today and my hCG has dropped to 11 (from 30 on Friday), so it's definitely over for us😪

So sorry @Sezmarelda1 . x

@HoldingOn2Hope I am so sorry to hear what you've been through since we last spoke. 💔 Tommy's put me on sitagliptin for my stem cells, but I've completely lost confidence in it.
I have had lighter periods (bar one) and my FET was delayed because my ivf doctor thought I has scarring and my lining was poor and not triple later after ovulation. I had a hysteroscopy last month which said all was fine. So I'm doing a medicated tome intercourse cycle and I've barely responded and my lining is crappie again.
Dr Shehata has added in gcsf injections to my protocol as my last baby was normal. So will try that moving forward.
Sending love ❤️

@Sezmarelda1 I am really sorry to hear this, I've been thinking of you

@InvisibleDreamer how are you?

I am doing superovulation with Dr S this cycle but so far, its a big fat flop. Had my cd11 scan yesterday and I've got quite a few tiny follicles and thin lining. I've normally ovulated by now on my own. I'm on estrogen as well this time so not sure if that's slowed things down or just stopping anything happening at all. I've got big regrets trying superovulation again and wish I'd just taken the month off. I've got to go down again on Friday for another scan. Although I'm struggling to see how things will be different 😕

So sorry what everyone is going through...you are all such warriors!

I'm just about to start my first superovulation cycle, and I've been put on 2 Letrozole tablets a day based on my antral follicle count in my last scan. Really have no idea what to expect with this whole treatment plan, but actually enjoyed the month break of not being on prednisolone (makes me feel super low...as if the whole process isn't depressing enough😂).

@VenusStarr very up and down as always! I thought I was losing my mind the other week because I felt on a bit of a high, then I realised I actually felt happy - I’d just forgotten what it felt like! Tomorrow is one year since our transfer finding it quite hard to think 1 year ago I was pregnant & we are still way off doing any transfers. It’s our wedding anniversary today, last year we didn’t celebrate because I was exhausted by the IVF & this year we just don’t feel like celebrating. I’m having lining looked at via scan on Friday to see if it still looks uneven & to see if cyst has gone. I’m not expecting good news on either front but at least we can make a plan if we know the score. I was hoping to have completed 3 banking rounds and be having my hysteroscopy next month but of course it hasn’t panned out like that. I’m sorry your medicated cycle isn’t going to plan and your lining is still misbehaving. So annoying our bodies don’t want to do what we want when we want! How are you coping overall?

@VenusStarr so lovely to hear from you even though we are still in crappy situations, I remember when I first joined the forum 4 yrs ago and to think things are still like this...it has to get better one day doesn't it? I know a few of the ladies back then had success with Dr S. I think I just got fed up of the travelling although Geri was amazing so I'm thinking about doing a few more rounds of ovulation induction too.
Did you see Prof Brosens for the sitaglipton? I had a chat with him today and he's told me to make an appt with his co-ordinator. Bit of a strange man lol I asked him if he needed me to bring along any blood tests or previous pregnancy scans etc and in his own words he said 'I don't give a crap about those and I'll tell you why when I see you' I was a bit 😳 by his response!
What's Dr S think of the sitaglipton and what are the gsfc injections?
I can't believe how similar our journeys are, I read back at some of your posts and I felt like I was reading my own!
Have you had a vaginal microbione test done or spoke to a nutritionist? I had a consult with Mel brown and I'm happy to share some of her recommendations for conception/ivf xxx

@InvisibleDreamer Awww bless you, I know how you feel as it was our 16th anniversary on Saturday and this time last year we were going through a miscarriage and this year we just didn't want to celebrate. Friends/family were sending us msgs and social media posts and I just wished they didn't...it's such a trigger especially as I remember exactly what and where we were last year.
Xx

@VenusStarr just out of interest have you had the covid jabs/booster? I found that my periods were all over the place and very light after my 2nd jab and I've had mc's but the one last year was horrendous and my nhs consultant agreed that the jab could have contributed towards the haemorrhage...it was something else and even the drs were baffled as to what was going on and took months to resolve. I'm not against the vaccines as I had mine mainly because I love travelling but so many women have have had weird cycles after it. Xx

It hard to believe this is my life @HoldingOn2Hope I'm sorry you're on such a similar path and timeline.
It was professor B who prescribed the sitagliptin. I'm mixed with him, he has a strange approach. I emailed him when I had the scarring issue as I was worried whether the sitagliptin would be negated. He replied straight away to offer insight, jut I've since messaged to update, but still with concerns and had nothing back 🤷‍♀️

Dr S was not happy I was trying the sitagliptin. He put me on metformin due to my adenomyosis and the gcsf is neuprogen- he said its anti miscarriage? I think Dr Gorgy uses it if you have a dq alpha match (Dr S doesn't test for that). Feels very much like were in the experimental category now 🤔

I have done the microbiome tests, all clear.

If you could share the nutrition advice, that would be good. Thank you. I've really lost my appetite recently, ever since I had sedation with the hysteroscopy and I was sick, I've just gone off food and struggle to finish meals. I also don't think anxiety is helping!

@InvisibleDreamer ❤️ it's so hard to keep going. I hope Friday brings some reassurance. I have a scan on Friday too. I can relate to the up and down feelings.

@StillTrying10000 is it today you're having another blood test?

I had a horrendous day yesterday, so emotional. I ended up breaking down at work. I then had a panic as I got my biopsy results, I'd been told that it was all normal, but the report says disordered proliferative endometrium? So of course I googled and genuinely thought it was the end of our ttc journey. I've emailed the clinic to ask what it means. But I also posted in a Facebook group and thankfully someone replied saying she had similar and it is normal, it happens at a certain point in your cycle. But seriously?! Really wished they'd given me a letter. Also shows lay people shouldn't have clinical reports!! I have made myself quite unwell with it all.
Also not hopeful I'll have responded to tye letrozole on Friday, fed up xx

How did your appointments go on Friday @InvisibleDreamer and @VenusStarr ?

This has been by far the easiest MC for me (this was number 5) with minimal bleeding, and being so much earlier than my other MCs I think it's made it easier to accept. Not that a MC is easy to go through at any stage. I managed to collect some pregnancy tissue for testing, so I'm hoping there will be something there for cytogenetic testing.

I hope everyone has had a good weekend x

@VenusStarr what was the microbiome test you had done?

@Sezmarelda1 it was good news at the scan thank you for asking. Lining now looks normal - at least during mid cycle (day 9) and cyst has disappeared so feeling reasonably optimistic for next round. Wasn’t expecting such good news so really pleased & relieved. Sorry you have had to go through mc 5 times. Do you feel you’ve managed to find out any answers as to the reasons for your losses?

That's great news @InvisibleDreamer ! We get so used to bad news all the time, it really is nice to hear something positive.

I've not managed to find any reasons for my losses so far sadly. The first two MC's weren't tested, but #3 and #4 were both chromosomally normal and there were no issues identified with the placentas. 3 and 4 were both lost at 14 weeks. The most recent MC, number 5, was a lot earlier, so I won't be surprised if this one was caused by a chromosome issue. All my tests have come back normal so we have no idea what's going wrong but running on the assumption that it's immune related. I've been prescribed prednisolone and progesterone which I started with the last pregnancy, but if the problem with that one was chromosomal then no amount of pred or progesterone would have saved it. Just hoping we can get cytogenetics to confirm 🙏

@VenusStarr I really do share your pain :(
I keep telling myself I'll get there one day.
I had my appt with DR S yday after almost a year, he was a bit mardy about the fact I'd gone to Argc and basically said 'I told you so' in not so many words!
His plan for me is we do a few rounds of super ovulation and consider either a collection to bank more embryos or transfer the 2 I have.

Can I send you a pm so that I can email you the Nutrionist info?

Also has anyone had the DQ alpha test and where from pls? Xx

I believe Dr G does DQ Alpha tests

What are the signs of a partial or complete match? Is it failed implementation or chemicals?

My miscarriages have ranged from 9.5 weeks to 5 weeks.

Thanks

@Sezmarelda1 I’m sorry you have had to go through all that. I suspect immune issues too although I was on pred til week 8 & didn’t lose until 10+4 so can’t be sure. Have you had any extra tests done for immune? I found I had high thyroid antibodies and my TSH was higher than ideal for pregnancy & also a high ANA result. I’m now on thyroxine and I’m going to ask about HCQ for the ANA but not sure if clinic will give it to me.

@InvisibleDreamer sounds like I have similar issues to yourself. I've just been to Prof Quenby, she's doing the CERM test to check for inflammation, if so I'll have the trial for Doxycycline (which leaves me nervous incase I get the placebo). I asked about hypo antibodies (been on thyroxine for a year but mine spike when I got pregnant, although I also had covid at exactly the same time) and she didn't recommend pred for thyroid antibodies, again leaving me nervous for the next pregnancy. It's so hard to know where to go for advice or the right answers as each doctor seems to have their own theories. Wishing you well in your journey and I'd be intrigued to know how you get on and what you find out.
Depending on my endometrisus results, I may go private in the end too.
Xx

@Sezmarelda1 its so stressful isn’t it? Just feel like I am stabbing around in the dark trying to guess what may work. I was put on the pred for the thyroid antibodies (I wasn’t on thyroxine then) & it did bring them down & decrease my TSH. It’s so hard to know what to do isn’t it with doctors saying different things & people saying different things worked for them. I really hope you manage to get success too.

@InvisibleDreamer it certainly is! Sorry if I've missed it are you under Dr Shehata? I have to say everything I've read suggests steroids for any auto-immune issue, hence my concern. I'd love to put my faith in progesterone only but after 3 MC I want to do everything I can! Same back to you.
Sorry @Sezmarelda1 for hijacking your chat xx

@FfayeN Hi, I’m with Create Birmingham they do have someone with an interest in reproductive immunology but they are not actually my consultant. I have found my consultant to be knowledgable but I have had to ask for things myself. I asked for immune tests hence I ended up on the pred for high thyroid antibodies & inflammation. It would be worth having some extra tests I think if you have not had them already.

I’m wondering whether to see a reproductive immune specialist like Dr.S. For me I don’t think there is enough clear evidence to suggest the treatments they offer make a difference especially when it’s a big extra cost & time commitment. As much as I want to throw the kitchen sink at any future pregnancy you have to draw the line somewhere. However I will probably do a bit more research before I make a final decision.

@FfayeN I was considering the CERM trial too but it would mean 3 cycles where you can't TTC which I didn't like the idea of. Although perhaps the break from the pressure of TTC would be nice in some respects. In the end I found out you can buy Doxycycline privately online through reputable places like Lloyds pharmacy and Superdrug for malaria prevention, so that's what I did. Just putting it out there as a possible alternative option. I do feel bad that by doing it this way I've not helped the research, but equally I had to do what was right for me and my partner and it guaranteed I wouldn't get the placebo by doing it this way. I've since had another early MC so I'm not sure if Doxycycline was the answer to my problems, although I suspect the MC was probably chromosomal issues as it was so early compared to my other ones, in which case nothing would have changed the outcome.

@HoldingOn2Hope have you and your partner done 23andme by any chance? That's how I looked at our DQ alpha data. There may be more straight-forward ways to do it as it was a bit hard to interpret to be fair!

What was the reason for stopping pred at 8 weeks @InvisibleDreamer (if you don't mind me asking)? My thyroid and ANA have been checked and both were normal. The only abnormal blood test is my ESR which is an inflammatory marker, and it's been consistently raised for years. I have an autoimmune condition so it always gets blamed on that, but despite treatment for that with immune suppressants and that condition being in remission my ESR remains mildly raised. My most recent ESR blood test was a couple of weeks ago, a few weeks after a course of Doxycycline, and it was normal for the first time in years, although I'd also been on pred for 1 week for my most recent pregnancy, so I'm not sure whether the pred or Doxycycline lead to the improvement.

Aw thanks for the info @Sezmarelda1. I had seen that you can get Doxy privately, I am going for the testing and then based on those results will be what lay ahead of me next. Luckily we've not been TTC since my miscarriage so we skipped the first month of the 3 month break by using protection anyway. Even then I have also booked a consultation with a private clinic anyway. It's so frustrating when no one had a straight forward answer and in the meantime I'm still waiting the cryogenic testing from my last 'products'. I haven't been tested yet for NK cells but suspect any auto-immune condition means these are raised. My last MC I had covid when we conceived so I also wondered if that meant my immune system was in overdrive too. Sadly we'll never know! I've read a lot and some studies recommend pred for thyroid antibodies some say as long as the condition is in the right range it won't affect pregnancy. There's just so much to digest with it all I get the dreaded research eyes where nothing then makes sense 🫠. Hopefully we will both have some answers soon xx

@Sezmarelda1 the upsetting thing is I don’t think there was a real reason. My clinic discharges you with a letter to GP after 7 week scan. I managed to buy another box of steroids after the scan as I was about at the end of what they originally supplied me with. They missed the steroids off the discharge letter by mistake so I got another letter to give to GP but I don’t think I read that one before handing it in so don’t know what it said. My GP then discussed weaning off steroids but I wasn’t sure so rang clinic. Couldn’t get hold of my consultant but they got another consultant to look into it & they said I was fine to wean off. I was so ill by this point with hyperemesis that I was partly relieved to take one less drug & I told myself any bleeding or pain I’d get the clinic to put me back on the steroids. When I went back to clinic for a review post mmc they acted like they had already decided I should stop at 8 weeks anyway so I don’t know if that was why I was running out of drugs but I got the impression at the time that once discharged they would just do whatever GP said.

I'm so sorry you went through all that @InvisibleDreamer. It's really difficult to know what the right thing is to do, and I often feel like the experts don't really know either. So much of this is a guessing game 😔

I'd be really interested to hear your experience of the CERM trial @FfayeN. I really do hope you get some answers.

Hello, wondered if any in here have experienced recurrent miscarriage and also a molar pregnancy? Want to try immune protocol once I get the all clear to try again and wondering whether it will be a safe option / any key considerations. Grateful to learn if anyone hete with relatable history?