Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

Just an update! So I decided to test using hubby's urine and guess what??? High fertility- flashing smiley!!! Absolute BS 😂
As of ttc isn't stressful enough these tests are pathetic too! So annoyed but I'll sleep better today knowing it's not me!

@Ralowi I found pred did disrupt my sleep
a little at first (I already have a sleep disorder) but then settled. I actually struggled an awful lot more when I started on thyroxine I was only getting 3 hours of sleep a night and felt really wired. I changed when I took my dose and then it calmed down. Pred also made me more hungry but not excessively so.

@InvisibleDreamer how long would you say it took to settle? My sleep is the same if my tsh is too low which it always ends up being after miscarriage as I’ve increased the thyroxine during pregnancy. So it’s constantly up and down. I’m starting to think that all the pred does is make you ill in one way or another and that’s how your immune system is suppressed, I could do that myself by simply not sleeping lol x

@HoldingOn2Hope snap! Same doctor ☺️ definitely ask him. I was surprised he was quite keen to hear it was in my protocol now.

Are you doing a natural cycle this month, or superovulation again?

Let us know how your appointment goes next week. Xx

I know the list of side effects for pred is pretty rubbish @Ralowi, but I'm another person who doesn't have any issue with them. I have a chronic inflammatory condition so I've been on them loads of times over the last 20 years. I've had a moon face from them when on high doses, but I don't expect that will happen with the dose I'm currently on (20mg), and even if it did it's a small price to pay if it prevents another miscarriage. Definitely try them with an open mind if possible, you can always come off them if they don't agree with you.

That's super annoying about the ovulation predictor test @HoldingOn2Hope !!!

Hi @Ralowi , I just thought I'd add I didn't enjoy the pred but was on them for 3 months. I didn't notice a change in appetite, moon face or anything but I didn't like the way they made me feel emotionally. Nothing terrible I just didn't feel myself. Dr S then took me off them, as I was on hydroxy and added ovulation intralipids. I know earlier in the thread people were commenting on the side effects. I really liked the hydroxy, experienced little side effects and my eczema on my head and stomach problems all disappeared. So what I'm saying I guess is that we all react a bit differently to the meds. But Dr S is usually sympathetic to those individual reactions and would change the meds accordingly once you've tried some out. X

@Sezmarelda1 thanks so much, I have just had my follow up and he did say the side effects don’t affect the majority of people too badly so I’ll have to hope I’m one of those. I told him we might delay treatment which he was fine with but did say if the side effects are the reason for that they shouldn’t be. And if I did suffer badly I could come off the pred and it comes out of your system straight away. So I do feel a bit more positive. I would also take moonface over miscarriage although after that zoom chat I’ve noticed my face is already rather large lol x

@KtAgs youre right it seems everyone reacts so differently. Dr s even suggested I might sleep better on it! Glad you had some positives on the hydroxy. I’m guessing this will be my next choice. He said the IVIG were the most effective but with the cost implications the pred should do the job. X

I forgot to mention, at follow up he basically said that the intralipids are to target the activity of the nk cells so I kind of feel now even if I take the pred, that will only reduce the actual count and I’ll still be in the same rubbish position. Can anyone tell me the cost of the intralipids please? Sorry I know I’ve read it before but this thread is so long now! So undecided over what to do. If we go for it this month I’ve a few upcoming events I’d have to not drink for which is a pain. I’ve always been really strict with no alcohol after ovulation but now wondering if I needed to be (now I know what’s wrong). Not that I’d want to scupper my chances by having a drink when we’ve spent so much! X

@Ralowi intralipids are £380. Didn't you say your activity wasn't too high? Mine is ridiculously high 🙄 dh doesn't think I need intralipids at all. And I know he doesn't use them in his NHS clinic.
It's hard to know what to do for the best. X

@VenusStarr i feel like he would be seriously disapproving if I got pregnant and hadn’t done the intralipids and would blame anything going wrong on that even though there’s a high chance that may happen anyway! It’s so expensive to have to pay that every month and would be a full day of travelling, I feel like on positive test would be fine x

@Ralowi I'm also dubious about the intralipids. Its so expensive and how can some soya really prevent anything. I dunno....just seems odd. In my results the intralipids only reduced NK activity by 14^ whereas the steroids reduced it by 86%. But I'm just going with it because i know if i didn't i would blame myself if i wasn't successful.

@Tgrf55 that’s good to know thank you. That an amazing result on the pred. How long after being on the treatment did he repeat your bloods? My activation is 1.01 which has been marked as high but it’s only just above borderline at 0.99. Also I’ve noted that the pred would put me down to 19% cytotoxicity but that was on 10mg and I’ve been prescribed 25 so surely that would take it down even further x

I actually havent had my bloods repeated but my initial testing was in March so i guess they may wait until 6 months have passed? I have a normal amount of NK cells but their activation was 1.81 which tipped me into very high (1.8 from memory is very high) mine was tested with 10mg too and yep i agree i guess the 25mg is to cover all bases! Honestly try not to worry too much about all of the meds i know it seems so daunting at first. Cyclogest is def worse than the pred for me, they're not as scary as you think. If you google it there will always be people saying they gained 4 stone in 4 days lol 😆 but in reality 25mg isnt overly high dose xx

@Tgrf55 ah sorry so did you mean the results from your initial tests where they test the effectiveness of different treatments(on mine it says nk cell cytotoxicity assay)? Mine doesn’t mention anything about activity on that bit, only a reduction in killing. I’m thinking what I might do is just try the pred alone and if I get pregnant, then book the intralipids. Yeah 1.8 is the borderline between high and very high. But at least you’ve not got a ‘double whammy’ (as he put it) like me, both high and active. Yeah you’re so right about Google. I have got it into my head I’ll be tired and overweight but maybe it won’t be as bad as I think x

Hi Guys, just wanted to join and have a bit of a vent… I’ve got an appointment booked with Dr Shehata in September which was the earliest I could get. Just had a miscarriage following a fresh ivf cycle. The embryo only grew to 6 weeks. Been ttc since December 2020. This was my third loss. Before this it was a chemical then a loss where we saw the heartbeat but again the embryo grew to only 6.5 weeks and then more than a year of no BFP. I thought my hydrosalpinx was the culprit but that was treated earlier this year and I’ve still miscarried.
I’m 42 in November so I’m interested to know what Dr Shehata thinks. I don’t think I’ll have had my miscarriage results (normal/abnormal) for another 10 weeks so won’t be in time for Dr Shehata’s appointment.
Been trying to drag myself out of this mental slump.

@birdbybird sorry to hear about your losses. i only saw dr shehata for the first time a month ago so there are a lot more experienced people on this thread, but i think it is definitely worth having the initial tests if you can afford them. It’s hard to know as 3 miscarriages can also be down to bad luck (I have had 9 so knew it wasn’t that). I have only got as far as 6 weeks and believe this is quite common with high nk cells. I didn’t have a clue about any of the immune stuff until I posted on here in desperation. You are in the right place for advice! Also if you haven’t already listened to it dr shehata did a podcast that explains a lot, let me know if you want the link x

Hi @Ralowi thanks for replying. I saw you just had your appointment. I hope I get some answers. I feel like it’s worth spending money to get some answers…
Just feeling low at the moment…

@Ralowi I think I’ve listened to the podcast.
When can you start trying again?

@birdbybird well they are meant to be sending my prescription out this week. I think I’ll be due to ovulate at end of week so it’s cutting it fine. Dr s wants me to go down to Epsom every month before ovulation for intralipids but at £380 and a 7 hour drive I’m going to leave it till I get a positive test and hope for the best. I think doing the immune stuff alongside ivf is easier though as some of the clinics will do the intralipids for you. Sorry you are feeling low, it’s a horrible thing to go through. Have you any children? I did feel more positive once I got the ball rolling with dr Shehata even though I’m now terrified to start the treatment! X

@Ralowi I’ve got a 2.5 year old little boy… which makes me feel guilty as I have one… But I’m in this strange mental space where being with him makes me miss what I don’t have. Do you have kids?
I’m in south west London so Epsom would be ok I suppose, but I’m just not sure whether I’ve got time given my age.
Also with the 80 or 85% success rate, I wish it were published somewhere… just worry sometimes like you said before I think about how effective this will be.
I have no autoimmune symptoms… but I did sneeze a 100 times the weekend before my final scan which confirmed pregnancy wasn’t viable.
Also my mother suffered from a condition which could be automimmune related between two of her pregnancies which were 8 years apart and just couldn’t get pregnant in that time. She felt there was a link but this was in the 1990’s. So I don’t know… maybe I have family history.

@Ralowi was going to say she (mum) started on cortisone (I think a steroid) and then became pregnant soon after at 41 and gave birth at 42! Her last pregnancy before that was 8 years earlier when she was 33 and she acquired the condition (alopecia) 10 months after giving birth at 34.

@birdbybird I have a 4 year old son, they say immune problems can become worse after a child as the cells are primed and waiting for something to attack! But I had 3 miscarriages before he was born. I didn’t do anything differently with my son but dr s said it could have been stress related (although I don’t recall being particularly stressed). I have an under active thyroid so mine is probably connected to that. Yes dr s will ask if there is any family history of autoimmune disease. My mum had Graves disease. So it could all be linked in some way x

So I have told them I will only be doing the intralipids from positive test and they have basically said what I thought which is that this is deviating from the treatment plan which would give me the best chance of success. I’m now doubting myself but I’m just thinking will 10 days later really make much difference? Ive even had bfp at day 8 before. I’ve read the intralipids are to bind the nk cells together and I guess this slows them down? Plus the pred alone did show a reduction to 19% on 10mg and I’ve been given 25mg. Just need to convince myself I’ve made the right decision!

Hi @Ralowi I wish I had advice to give you… hopefully someone will be along…

Do you feel you get pregnant easily? I have found it hard to get pregnant (over a year without a BFP). If it were me and I could get my husband to do the journey with me (I don’t drive) and I’d throw everything to any bfp I get, as they are so rare and far between. My ivf clinic don’t do intrallipids…so if I’m lucky enough to get a bfp again, I will make the journey…. But I’m also closer than you. A 7 hour journey may make me think twice.

@birdbybird yes we do get pregnant easily although I have read on here that on treatment people haven’t been able to conceive. So that’s a worry. Obviously I wouldn’t want to do anything to prevent a successful outcome but from what I have read the intralipids don’t do a great deal. I feel as though this is the clinics main source of income, I think it’s only soya and egg whites or something. It’s just getting time off work for both of us and childcare is going to be a massive issue. I could probably drive myself there but I’d rather not as it’s such a long journey. I know what you mean though, if I lived closer it would be a no brainer but there would have to be a limit on how many months we continue the treatment plan bearing in mind the cost the fact we may still miscarry or take a while to conceive