Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

I think if it's on zoom, they email you. Buy I had my results in person, so I might be wrong! @Ralowi they'll definitely chase you for payment!! ☺️

@VenusStarr no apparently not. Strange because I know people have had results emailed prior

@Sophi81 just catching up on this thread, and thought I'd let you know my story (which is so far successful) as I responded similarly badly to you on superovulation.
We did it twice, first time one follicle 8 days late so I ovulated on day 22 instead of my usual 14. We didn't even get to do the trigger shot as had written the whole thing off, only realised I'd ovulated as we went for a follicle scan and could see it had happened the day prior. Cue the emergency sex, and we ended up having a chemical pregnancy that cycle (which is our main issue, we'd had 8 in one year!)
Following month upped the letrozole to 7.5mg and also added GCSF injections, still one follicle only so we didn't have much hope but triggered anyway when we 'thought' I'd ovulate based on the size at the scan. Turns out I ovulated a good few days earlier than the trigger, so I'm not sure what it did or if the GCSF even worked as it would have been taken at like 10 dpo instead of 6 but it all somehow worked anyway and I'm currently 16 weeks. This is purely speculation, but we hadn't got further than a chemical pregnancy in about 18 months before this so I wonder if the trigger and GCSF helped with implantation, or if the letrozole helped the eggs mature better or something like that. But either way I responded really poorly to the letrozole but it still somehow helped (so far) xxxx

Thanks so much @VenusStarr that’s really helpful. Thanks for taking the time
to explain it. I’m currently taking 5mg a day (2 tablets)

Wow, what a journey you’ve been through. Congratulations, it’s great to hear successful stories x

@ForestThrills Thank you so much - we're certainly not out of the woods yet but it's way further than we've ever been. Previous to this it's been 2 natural miscarriages at 6-7 weeks, 1 missed miscarriage at 10 weeks which had stopped growing about 7 (which we later found out was due to Turners). After that it was 6 chemicals pretty much in a row before we went to see Dr S - 2 more chemicals on the first protocol, and then third time lucky I suppose after we switched things up a bit. It was 6 months under the clinic, and 2 of superovulation before we got this positive test and even then it started off as identical twins but we lost one at 9 weeks (the other is still hanging in there though!) so still a bit of an ordeal even after we started treatment xxx

Congratulations @Trytryandtryagain11 ❤️ I'm going to be on gcsf now, this has given me a bit of hope. Thanks for coming back to share. I testing about your superovulation experience, similar to mine with the delayed ovulation.

No worries @ForestThrills 🤞 for you

@VenusStarr thank you - it's all so scary still but I definitely have hope that this could be the one for us now - Obviously I don't if it was the trigger and GCSF that worked, but it was the first month doing both which feels like it could be. I was absolutely fine on the GCSF too, I was really worried about it but they are not tricky at all - the only thing I'll say is take them out of the fridge at least 30 mins before you go for it, I found them a bit sore when cold but otherwise quite easy to take. I also asked them to write me a prescription and got them elsewhere (although I had to call around a lot of pharmacies as it's quite specialist so they have to order it in etc) but the clinic cost was £400 for 5 injections, and my local Morrisons pharmacy (I called a lot of places) did them for £250 for 5 so that was a huge saving over the course of the 10 weeks on them! xxxx

Thanks @Trytryandtryagain11 I have done one once. Pharmacies local to me don't stock it and were being funny about ordering for me. Morrisons actually called me back to tell me not to take the prescription to them!! I got it from the chemist a few doors down from crp in the end. But if I do get pregnant again, I'll shop around again. I've got a few at home now, so the urgency isn't there as it was. Xx

@VenusStarr Oh it's good you've got a few, I had the typical mad dash calling 20 pharmacies trying to find what is clearly a very obscure drug with about 2 hours to spare! Sending you loads of love and luck with GCSF - I googled a lot and did find some good stuff about it helping implantation! xxx

Hey ladies can I ask what the gcsf injections are? I asked Dr S when I had an appt with hun a couple of months ago and he kind of said he doesn't think he needs to include them in my protocol yet...he wants to try hydroxy and pred and last cycle I was told to take humira too. Still haven't get.

Anyone found that their hair is like straw with taking hydroxy? Xx

@VenusStarr are you at Create Bham? Xx

Hi, I have just had my results (my follow up from initial testing is on Friday). From what I can gather I have normal nk cells but high activation. My treatment plan is prednisolone, omeprazole (first time I’ve heard of this one?) progesterone and intralipids around ovulation time, gutted as don’t really want to have the intralipids. The dose is 100ml. Can anyone say whether this is a normal dose? I don’t know why but just got it into my head the intralipids aren’t really that effective but I’m not sure whether I’ve made that up or just what I’ve gauged from reading on here. Also I’ll probably be ovulating in a few days and it all seems so rushed, I’m not sure i can even get down there in time! But suppose I’d rather not delay things further. The alternative is waiting another month till after the 6 weeks holidays which may be a better idea as I’ve got my 4 year old 3 days a week and don’t know how I’ll react to all the drugs x

I have just re read the results and my nk count is 246 which is high but the % is 11.4 so considered normal. I hope he explains all this Friday!!

Hi @Ralowi yes your nk cells are high (over 200 is high from memory). What's your activation? Mine is 3.05, I think over 1.8 is very high activation.

Omeprazole is to protect your stomach from the steroids, so not an immune med. I know some people have been prescribed intralipids but decide not to have them, you could check when you speak with him? That dose is standard though. It usually takes about an hour to administer.

I know you've not sent him yet to explain what they mean, but how are you feeling, knowing there is an immune issue?

@HoldingOn2Hope yes, I'm with the Birmingham clinic, you are too aren't you? The doctor I see there was much more in favour of gcsf than he is of hydroxy or intralipids.
I was put on it after my MMC last year which was a healthy baby (cytogenetic results, we didn't pgs test). I'm already on pred, hydroxy and intralipids plus fragmin during ivf. So it didn't work for me. He told me it's 'anti-miscarriage' - there is a patient information leaflet on the crp website. There doesn't appear to be many studies, but its also known as neupogen but injectable. I know some ivf clinics and I think Dr Gorgy does it as a uterine wash.
It's expensive and quite a flimsy injection but not painful. You have to have full blood count bloods every 2 weeks as well.

My hair is in awful condition, not so much straw, just really fine and damaged. I put it down to the miscarriages as it started before I started immune meds. But I also have low level thyroid issues too, so it could be that.

@VenusStarr the activation is 1.01 so it’s only just into the high category. I am feeling relieved to know for sure but I had already convinced myself. But I’m still not sure whether to go ahead with the treatment tbh. It’s the pred that I’m so worried about. I’ve had chronic insomnia for years and they’ve now sent me the long list of side effects which all sound horrendous but listed separately is the most common side effect of trouble sleeping. I told dr s my concerns and he basically brushed it off and said you might be ok and just do some exercise before bed, if you struggle we will change the protocol. But feel like
it is the pred that works. Good to know about people not going for the intralipids anyway, I didn’t want to feel pushed into it. Just feel really down now as I know if I go ahead I’m going to feel absolutely crap and I’ve got my little boy to think of, I couldn’t put him through It. How are you doing? X

It's difficult @Ralowi you've got to go with what you feel comfortable with.
Personally I've not had issues with the meds
The only real thing for me with pred is moon face which comes on quickly for me. I think I'm more sensitive to progesterone which tends to wake me early.

I'm ok, thanks for asking. Just waiting for my period and then I'll start a new frozen embryo transfer cycle x

@VenusStarr everything crossed for you. It’s good to know not everyone suffers the side effects, would you say you had them at all to begin with and over time things have improved? I just feel like even if I didn’t react badly, in my mind I won’t sleep just knowing that I’m on them. crazy as I can’t make my mind work the other way to convince myself this will work and to stay positive!! Moon face doesn’t sound much fun but I’d take it over the insomnia any day. Would you say that’s because the pred causes increase in appetite or is it literally just the medication itself? X

@Ralowi I don't recall any bad side effects. It's recommended you take the whole dose first thing so that probably helps. I don't think my appetite increases when I'm on it, but I think it causes water retention in me and maybe I metabolise food differently? I wouldn't say I eat more on pred. X

@VenusStarr that is a bit encouraging thank you. I suppose there’s only one way to find out. I’ll have to check with him tomorrow as I take my thyroxine first thing on an empty stomach and not supposed to take other medications with that. I feel like I’m going to have to do a proper schedule for medication. I’m currently just taking all the vitamins together at once around mid morning. Do you think that’s ok? I haven’t started the aspirin yet. I think I’m going to tell him I only want to start the intralipids if get a positive preg test. I find the progesterone terrible for bloating so I can’t imagine how it’ll be on both. Also says to use 2 progesterone pessaries in the evening, am I being stupid by thinking you can’t put 2 in?? X

I'm on levothyroxine too @Ralowi so I take that first thing when I get up (and omeprazole if I'm on that), then have breakfast and take pred after I eat / other supplements.
Aspirin I take in the evening around 9pm. I usually do cyclogest morning and evening. I've never done 2 together, seems a bit weird to me and I just prefer to spread it out. X

@Ralowi just chipping in on the meds. I really wouldn’t worry about the pred. Everyone has different reactions and you need to go in with an open mind. I was so scared before I started taking it but my only side effect is waking up at 5am. The progesterone gives me awful bloating (I use 2 at night) but I just put up with that. The intralipids i would be surprised if you have any side effects what so ever, I never have. The thyroxine I don’t take on an empty stomach I take it with all my other vitamins and it’s done it’s job but I’m on a very low dose I’m not sure how much you’re taking.

@VenusStarr @Tgrf55 thanks for the advice, I feel so out of my depth. I’d be happy with waking at 5 if I could get to sleep in the first place (this is my usual problem). I even asked dr s if I could take sleeping tablets and unsurprisingly he said no haha. Worth a try x

@Ralowi im usually asleep by 10pm because I’m so tired getting up at 5am 😂 but obviously if you suffer from insomnia that’s no good. The progesterone can make you drowsy though so fingers crossed it actually helps you to get some sleep xx

@Tgrf55 i did sleep better on the progesterone actually. I could see the side effects as a means to an end if I knew that ending was definitely there! X

@VenusStarr yes Create Bham too, are we like twins from a previous life? 😬 My last pregnancy was tested and was a normal male baby. I see Dr Datta at Create so may speak to him about neupogen as I know a few ladies at Argc who have had it. I have an appt with create next week as if I decide to give myself another go at transfer then Mr S will do immunes.

I'm having another weird cycle, last month I didn't have a positive ovulation teat even they I was on gonal-f and had dominant follies and this month I've had 5 days of flashing smile on a cb advanced ovulation test and no static smiley. Just getting pissed of with it all! I had lots of ewcm a few days ago and was convinced I was ovulating then and now there nothing.