Immune/NK cells pred thread #31

Sorry for the late reply, I keep dipping in and out as its been a busy few weeks!

@Deerdancer34 That really is unusual isn't it regarding the letrozole and higher dose? It seems more common than I thought! Where about are you with your SO cycles? Have you started 10mg or are you in a two week wait currently? And is your plan to do the full 6 months?

I'm also a little peed off because at my last scan dr edge was going through all my follicle sizes for all the cycles I had and she said only the first cycle had ideal follicle sizes at trigger (19/20mm) the rest were a little too large even though they made me trigger and have intralipids. If they weren't the ideal size, why wasn't I just told to abandon the intralipids/trigger as I ovulate on my own anyway, seems like a waste of money. I also hadn't been told to come in any earlier for the scans to avoid them going over 23mm..

@Sophi81 I'm really intrigued by this too! I can only wish something like that happens to me! Unfortunately, I just don't seem to be getting any bfps naturally at all in all this time we've been trying (4 years). However, I have also seen quite a few stories from people who stop their meds and suddenly become pregnant. So who knows, lets see what happens! Thanks for sharing your story 🤞🏼

@VenusStarr How are you feeling since deciding to take a break? Glad you've managed to get the ball rolling with ivf, it's weird you said that about being on more meds causing your body to shut down because i feel exactly like this too! If I had ivf again, the issue I need to explain to these consultants is that my body has no problem growing follicles, if anything they grow TOO fast and I feel like all these clinics go hard on medicating us with high dose stims, which I feel does the opposite to what I want or need. Its hard to explain it to them as I don't really have any scientific evidence except just my history of how I've responded before and even seeing how I respond with letrozole makes me question it all. It's almost as if I need stims every other day to make sure they grow slowly and evenly if that makes sense. I just really hope I don't have to cross that bridge and really hoping these SO cycles work although I do feel more and more hopeless as months go by.

Currently in my 2ww, test day is next week but we've booked a few days away when its test day to either 1. celebrate if it works, or 2. have a good distraction from the upset lol. I also second @Lily1990 I get all my meds and bloods done from my GP but I understand this isn't always possible but its a worth a try! xx

@comingsoon786110 thank you, that is really great to know! In case it helps anyone else, I went to my GP yesterday and he was happy to prescribe me all the medication Dr S prescribes (pred, omeprazole, Cyclogest, and metformin). Which will save a lot as was nearly £200 last time for a 3 month supply. He said he was happy to help in any way they could (including doing all the 3 month blood tests that CRP request). I went into the appointment feeling like he'd question it and I'd have to really make my case (was preparing to point out how impossible I've found it to get a referral to the NHS recurrent miscarriage clinic) but it was a nice surprise. Definitely recommend to everyone to try and get your GP to do the same, we need all the help we can!

Hi everyone, hope you are all doing good!

Just thought I would share something with you following a discussion I had with a nurse in my EPU. Not sure if anyone knows but recently NICE guidelines have changed (March 2022) and anyone who has suffered from a miscarriage gets prescribed with progesterone up until 16 weeks gestation.

This whole time I was buying it from Dr S (and it is defo not cheap, about £22 for a box of 15 pessaries) which only lasts about a week. I only picked up my prescription since my April miscarriage so will definitely be doing this going forward.

I think they do have to do a 6 week scan on you though and confirm a heartbeat. Everyone EPU is different though and mine gives it when they see a positive urine test so its worth asking for!

At least thats a bit if money we can all save xx

Also - does anyone read "crap" everytime they read CRP? I don't think they are crap but it's a curious name to choose!

In the end I cancelled my appointment. I don't think CRP is for me but I may well almost certainly change my mind. I think it's hard to envision ttc actually being successful and I don't really want to add being broke to my list of woes. I'm going to start saving up though and either spend it on CRP treatment or a really good not pregnancy friendly holiday.

Anyone mind if I stick around and whinge about ttc after a long list of losses?

@RumandSpinach not a choice as such but I guess you can say no to certain drugs etc. I guess he can't stop you trying but he does get you to sign to say you agree not to try whilst having tests etc.

@Privatemedical246 oh no!! So sorry you've had to wait so long😫Does Mr S give you a choice of protocol at all? I think I can have a sensible chat with myself to wait until September but I can't deal with the idea of waiting longer 😭

@RumandSpinach if you can get all your testing done before seeing mr S you might find it works out the same. You have to wait to TTC until you've had all your tests results and plan etc anyway. My first consultation with Dr S was just talking about what test he can run and why. Then I have had the tests and then repeat for one of them to see if my levels had come down (this is for the th1/th2) which my understanding is not everyone has this raised so do don't need repeat and can start trying. I now need to have a further 2 injections before we can try so will be another cycle. It is so frustrating but I'm trying to stay logical that it is better to wait and have your body ready to carry. All in all it will have been 3 cycles I've missed trying whilst waiting for appointments and results etc. Just to prepare you mentally even going private with Dr S isn't quick.

@Sophi81 I'm really intruiged by your story. Its weird how the higher the dose of letrozole, the less follicles or so it seems, that's what happened with me... But what I was wondering about, was how did you go in for just a scan without taking the letrozole? Does that make sense? Could I for example request a scan without taking the letrozole and give that a go? I feel a bit panicked about having too many drugs after this Ectopic. I am going to try and get a review appointment for the start of September I think.

@VenusStarr so sorry for your losses. Recurrent miscarriage is really shit.

I think I will go for it. I realised I was thinking that if I have loss #7 I'll spend the money but that's really stupid, isn't it?

Bit gutted that Prof Shehata doesn't have any availability till September. I can see Ms Edge for tests but not results.. I really can't stand waiting to ttc another month (paused since April for the Coventry biopsy/stigaliptin) so I may have to accept I'll be 11dpo when I start treatment. I know I should wait but I just viserally feel I can't anymore, if that makes sense?

Hi all, I'm thinking of forking out for the CRP clinic but I was hoping you might be able to offer some advice? I feel a bit like a rabbit in the headlights.

I've been paused ttc since May, I've had 7 pregnancies, 1 live birth, 1 ectopic and 5 miscarriages. Some early, some less early (8-9wks).. I've had three emergency surgeries now from failed pregnancies and as desperate as I am to ttc I just don't want to do it again.

I saw Prof Brosens in Coventry, my uNK cells were low and I've been on stigaliptin for a few months. I can't find much about this online and don't feel super reassured that this will make a difference. But I wonder if my uNK cells are low this would mean that Shehata couldn't help me?

@VenusStarr I started hydroxy today as I had the meds with me and it happened to be lunchtime! You’re right about the taste, so gross, and I’m feeling a bit nauseous so will see what the next few days bring! At least as you say there’s a plan in place while I wait for my IVF cycle in September. Glad you’ve heard back from CRP and the IVF clinic and have an appointment scheduled in August. Hope it goes well, IVF/fertility journeys can be so long and hard xx

@Privatemedical246 thanks so much for this. I’m already feeling nauseous, which sucks lol. If this continues I may ask him if I could split the dose too, thanks for the tip. The journey really is hard but as you say having a plan is a positive. That’s good news that you won’t need to repeat bloods, one less thing to worry about!

@Sophi81 thanks so much for your response. Ooh that doesn’t sound good, let’s see how it goes. I don’t have a whole lot of options to lower my TNF levels so hope the next few weeks will be bearable.

That’s such lovely news for you, and reassuring. Thanks for sharing your experience xx

@Newbeginnings22023

I was put on hydroxy twice and both times I had hair loss issues after one week of taking them. Crp said it's unlikely it's the pill but I'm certain 100% it was the pills. I refused to take them after a week the first time and after 3 weeks the second time. I absolutely hate that pill and glad I stopped. Obviously each time I was scared I might lose the babies but luckily I've had 2 babies now without being on hydroxy xx

@star2022 sorry to hear you have been disappointed but reading your story reminded me of exactly what I went through. I had about 4 SO with dr edge and was getting 5 or 6 follicles! After triggering I wasn't getting pregnant! Then on my 5th SO I only had one follicle! I was like wth, So they upped my Letrozole to 7.5mg and the next 2 SO cycles was still one follicle! Again I was like wtf!!! So they decided to keep me on Letrozole and give me low dose gonal f. So this gave me 10 follicles but we had to stop treatment as my ovaries had over stimulated and I ended up in a&e. So we had a break for a month and went back to review the plan. At this point I had not taken Letrozole as we only went in for a scan. Therefore there was only one follicle there and dr E decided to trigger and asked us to try. I wasn't really optimistic as we had 7 or 8 SO cycles and if I couldn't get pregnant on that there was no chance I was going to do it on one follicle. Plus we were already discussing IVF with CRP and costs etc. But we did get pregnant shockingly. So just wanted to say I can totally understand how frustrating it is but it is possible to conceive with just one follicle.
Now I don't know if this happened because we had stopped all medications for 6 weeks. But I had a feeling that contributed. But I may be wrong 🤷🏽‍♀️

@Newbeginnings22023 I've been on hydroxy for about 6 weeks now. I felt a bit groggy after them at lunch time so dr S agreed I could either split them to morning and evening or just take in the evening. They are horrendous to drink as @VenusStarr says try not to let them touch the sides of mouth. But otherwise no major side effects. I had my call today with Dr S and I've got to have another round of injections before we can try but said no repeat bloods needed so that's something. Glad you've both got plans. It's hard this journey but at least a plan feels like you are working towards something. Xx

Hi @VenusStarr and all, thought I’d send a quick update after my appt with Dr S. He wasn’t too happy that I didn’t want the humira but he understood that I was basing this on the advice that I got from the TB specialist.
Anyhow, he put me on hydroxy which I started today for 6 weeks, then I’ll commence IVF alongside his complex plan. Would appreciate experiences from those who have tried hydroxy xx

Hope you’re feeling ok @VenusStarr xx

@star2022 The letrozole is confusing isn't it... For my 1st cycle I had 3 follicles on 5mg, then 2nd 2 cycles I had only 1 dominant follicle at 24/25mm on 7.5mg. She said if 3rd cycle didn't work to have 4 tabs the next time but like you, if it doesn't work on 7.5g, why would it work on more!? Crossing everything for you, that's a good follicle size and you only need one 💪but I get the frustration when it doesn't work, I also don't really understand why it doesn't!?
@VenusStarr I'm glad you have a plan it place, it feels far better when there's something to follow.

Lots of love to you all wherever you may be in your process 💖

Congrats to everyone who has had a recent bfp, it definitely does give us all some hope!

I'm so sorry to hear about the bfn @VenusStarr I was thinking about you yesterday. I'm glad to read that you've got a plan in place for next steps, does that mean you will now stop all meds until you can do an ivf cycle? Have you thought about doing a round with CRP? Are you planning on having a few months off?

I had a really disappointing scan! So usually I get 2 follicles on letrozole 5mg and this month I was on 7.5mg hoping for more - but i only had ONE! WTF
I was so disappointed, dr edge was just as disappointed but it was an ideal size for trigger she said (20mm) so we triggered at the clinic and i had my intralipids even though I was debating whether there's any point. I think even she is starting to wonder why it's just not happening for us, I ended up breaking down while I was there, this is my 5th SO cycle back to back with a polyp removal surgery in between too and then 4 ivf transfers before it pretty much back to back too so it's all just getting to me now. She did say i have a few options, she said if this cycle doesn't work, then to try 10mg next month (which i'm not sure will do anything if 7.5 didnt?) and then after that we will have to go back to ivf so i may be doing it with you too @VenusStarr

I just don't know which clinic to go to, Dr s told me Create is a waste of time the last time I saw him, and to be honest i didn't have a great experience with them so I won't be going back there. And dr edge mentioned CRP do a really good ivf cycle, i think you're put on menopur and gonal f and you have loads of monitoring based on your cycle/bloods etc and they make changes accordingly. So, i'm contemplating whether to just stick with them to get more of an individualised plan, its just distance thats the issue.

Gosh this process sucks x

Thanks so much for this @VenusStarr. I looked up prices of IVIG and wanted to cry lol. Will do some research and ask him tomorrow, see what he says. It’s such a minefield isn’t it?!

Glad you’re feeling better and have decided next steps. Which IVF clinic do you use?

That sounds lovely, hope your DH is well too. I’m ok thanks for asking, will report back after my appointment tomorrow xx

Hi @VenusStarr sorry to hear it was a bfn but good to know you have a plan in place. I’m planning for IVF as well in September/October and it’ll be our last go.

Congratulations to all those who had a recent BFP or birth, always nice to hear good news!

I’m preparing for my appt with Dr S on Monday so I have a question: does he do IVIG? I read that it helps lower TNF alpha but I have a feeling he doesn’t offer this (also couldn’t see it anywhere on his site). Can’t take humira so just really looking for alternatives.