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

Hi @Hayley220 - they say you should take the medication for at least 4 weeks before you try. So that would mean trying after your next period.

I have a 5 year old son and had a really straightforward pregnancy. I've read Dr Shehata say that alot of his patients have a normal 1st pregnancy but have issues with the second. But I never thought I'd find myself in this position.

xx

@SReyn thankyou i really appreciate that.. I’m so desperate to try but was thinking would be silly to try too soon and not give this HCQ a good go!
did you tell me your nk numbers and what was your activation? Im just so worried that mine are ridiculously high and this may not be enough xx

@Hayley220 - my NK cells were around 340 but I can't quite remember. I was a bit like @JessL12 and felt like a rabbit caught in headlights. I don't remember them mentioning about the activation either.

I was also keen to get on with it! I've seen on older pred threads that he use to say you needed to wait 8 weeks so not sure what prompted the change ....

I completely relate to the worry - optimistic it will work but sceptical at the same time. Already thinking a million miles ahead and thinking how I'll cope if it doesn't work and round and round it goes in your head.

x

@Hayley220 Yes this is what I have told myself. It’s a new pregnancy and miracles do happen 🤞🏻

yes I’m on 75mg of aspirin I’ve been taking this for a couple of months now with D3, folic acid & omega 3 xx

Hey everyone hope you're all getting on well!

I had my initial consultation with Dr S yesterday, all went good and had my bloods done too at an eye watering price lol. The nurses were really lovely though and told me where I could save costs by going to my GP which I will be doing tomorrow.

He said my situation is most likely to be a complex plan and he'd like to try me on a super ovulation cycle as my issue is trying to get pregnant in the first place.

Does anyone have any idea the cost of a super ovulation cycle roughly just so I can prepare ahead and also what a complex plan on a super ovulation cycle might look like?

Has anyone had success from a SO cycle, if so how many cycles did it take?

@star2022 heyy, glad your appt went well. Sorry I can't answer your questions but that's what he said for me too... About SO.That's really good the nurses said about going to the GP...I should have been brave enough to ask that! Did he explain why he thought SO would be helpful?I didn't want to sound sceptical (but I am...after everything!) but for me, I can't see how that would work if I have had failed IVF? Surely the issue is likely to be with implantation so why would SO be any different? Or did he indicate which drugs he might give you alongside SO? Did he say anything about prednisolone/hydroxy something and the others that he mentions on the website? He didn't say any of those for me but then equally I don't have any test results yet. Sorry for the Q's, I don't have my follow up for a while.

Hey @Zest11 Hope you're ok! Well I was a bit shocked as the girl at the desk told me about getting some of the tests cheaper from the GP herself, I didn't actually ask although when I saw the list I was already aware of which ones I could get done free. Not sure if she was supposed to tell me but she was really lovely and said its not fair to have to pay so much when you can get some of them free which was kind of her.

I mean the only ones I can get from my GP (but still save £250) on are things like Prolactin, Vitamin D, TSH so I had that done today via my GP. Hubby needs a DNA sperm fragmentation test which he will get done on the same day as follow up. I also need to do E2, FSH and LH via GP.

Like you i have the same concerns as I feel why would SO work, if IVF didn't work for me. I guess the only think I'm banking on is that something comes back from the immune tests, in which case I would need steroids/humira/intralipids accordingly. He was quite sure my issue would be immune related so we're banking on something being abnormal so we can fix it. Also, I'm sorry I forgot to actually ask about the average plan, completely slipped my mind its so overwhelming when you're there!

My plan is that if my results come back normal and he wants to try me on just SO - then I'm definitely not going to do that via Dr S as i can get those same drugs from my GP and do it via them. However, if something does come back abnormal then I'm hoping its the extra immune lowering drugs he puts you on that will help me conceive with SO.

When is your follow up? And was DNA sperm fragmentation recommended or has that been done already? I'm seeing my GP next week and was going to ask her if she can prescribe some of the drugs for me on an nhs prescription just as a back up rather than getting them from there.

Hi @star2022 I done 6 months of SO. Unfortunately, it didn’t work for me & I moved onto IVF. I think I was roughly £800 a month for scan, intralipids & ovitrelle. Then extra cost for extra meds if I needed them like pred, Cyclogest or letrozole.

I think if you were to do it through your GP it could potentially take longer. As you go for scans every month to see how your follicles are looking and if they are ready to ovulate, you then take an injection to ovulate & then have timed intercourse. So maybe without the scans & injection you could end up ovulating on all different days or not having intercourse on the correct days? That’s just my thoughts.

Shehatas office have honestly been so invaluable to me. I was sceptical at first but even now at 23 weeks I have other issues that the NHS don’t seem to be as on the ball about so I can contact CRP for advice & then go back to NHS consultant armed with what I need.

Good luck ❤️

@Zest11 they’ll run through what drugs they think will be beneficial based on your results when you have that appointment.

Hope everyone else is well & hoping 2023 will be the best year for us all ❤️

@LuckyNo14 ah thank you for that info.. and gosh £800 per cycle!!

Massive congrats to you! Was it IVF that worked for you alongside the steroids etc? Did Dr S say why SO didn't work for you or was it something else that made you try IVF instead? Sorry for all the questions, its just so hard not knowing what the right thing to do is, as we've already been down the IVF route but then I wonder if it was just a case of my immune system stopping the embryos from implanting back then so now i'm just hoping it will work naturally alongside any extra meds he gives.

It's good to see CRP is thorough with your pregnancy and that its helped ease the stress of it all, that's so reassuring! Wishing you all the best!! x

@star2022 I know, so much money!

So basically, I had 14 losses total, 2 x ectopics (one tube removed) but I still had one functioning tube & both ovaries. All of my losses were before 7 weeks, all chemicals really.

I mostly dealt with Dr Edge - who I think is great. They didn’t say why they didn’t think it would work but we chose IVF because we were at the end of the road, we just wanted one shot to see if it would work. 1st round of IVF worked for us with the complex plan. Do you take ubiquinol? I took 600mg of that - advised by Dr Edge. I think that’s what made the quality of my embryos better.

Now I have no immune issues (that I know) stopped all meds at 16 weeks. Now my issue is an incompetent cervix which technically CRP don’t really deal with but I see them 4 weekly over zoom - at a charge & Dr Edge will give me advice about it for me to feel confident against the NHS 😂

You could always try a couple of months of SO & see what you think/how you feel about it?

Thank you ❤️

Hi ladies, does anyone know why the timeframe Dr S wants you on Hydroxy for is 4-6 weeks minimum before ttc? I’ve just come on my period, been on hydroxy for 5 weeks and have had my two Humira shots… wondering if we should try this month, or wait so I’ve been on it for the full 6 weeks? I’ll have done 6 weeks by the time I ovulate.

Also - I’m looking to do super ovulation on the NHS initially. They are saying to take 2.5mg letrozole from days 2-6 but Dr S says 7.5mg which I believe is max dose. I know I ovulate on 2.5mg as that’s how I got pregnant with my latest loss. Does anyone have any insight as to what 7.5mg might do? Worried what will happen to me and if I’ll have too many follicles but no decent eggs. Hope that makes sense?

Tia xxx

Hi everyone, hope you are all well and doing ok. Its been a while since i posted on here.

Update from me i am now 32 weeks pregnant. Everything has been going fine but its now been discovered that babies growth velocity has decreased. No obvious reasons why but its been a very stressful and upsetting time. I have another scan next week as i am being monitored. Its been suggested the maximum i go to is 37 weeks before a c section but it depends how quickly little one grows. They are just under 4 pounds atm. Praying they keep growing.

@Sezmarelda1 @Sophi81 how are you both getting on with your pregnancies? How many weeks are you?

@HopefulH my dose was upped to 10mg on letrozole by Dr S the month i fell pregnant. All that happened was that i produced 4 juicy eggs on the side with a tube (i only have 1 tube and was only ovulating on my tubeless side) personally i think 2.5 is a very low dose and would ask for higher. Good luck!

Sending love to all xx

Hi @HopefulH i would also be in the exact same position and it will be about 6 weeks of taking hydroxy when I ovulate. I do plan to try next month as I feel I have waited long enough (last loss august 2022) waiting on test results and referrals etc. would love to know others thoughts - hope I wouldn’t be rushing it.. I tend to fall quickly so have to build myself up to it incase it’s another miscarriage.

@Tgrf55 sorry to hear the baby’s growth is slowing, that must be scary. How did they pick up on it, have you been going for growth scans?

Hi @Tgrf55 I'm sorry to hear you have had a stressful week. I can understand how upsetting this has been for you. My first pregnancy with crp was the same. My son stopped growing and had to be delivered at 36 weeks weighing only 3lb 10oz by emergency c-section. Luckily he didn't need neonatal care but did have jaundice. He is nearly 20 months now and healthy but still very small compared to other babies. Are you having twins or is it a singleton pregnancy? My current pregnancy I am 15 weeks now and I have already been told there's a chance it could happen again because of my history 😩. But they won't know til much later so I am quite worried about that. If you want to know any more I'm happy to discuss it. Sorry to hear you are going through this. Will be thinking of u xx

@Tgrf55 That does sound so scary. But it’s good they are keeping a close watch on things for you. I was oblivious that my sons growth had tailed off and he came at 40 weeks - and it was only then we realised as he was so small vs earlier growth scans!

That’s interesting that Dr S wants you to have more than one mature follicle. Did you have low AMH? I’m worried that with my low AMH, forcing more eggs will lower the quality of those put forward, a little bit like when DOR ladies do IVF - I know there is a gentler approach which is supposed to be best so the ovaries aren’t put under pressure to produce lots of eggs, instead of less good quality ones… I’m probably overthinking things but to be honest I’m just so terrified of going again!

@Hayley220 My last loss was in Sept 22 - so I too feel like it’s probably about time we tried again… I’m just so scared of going for it. Are you trying naturally or with super ovulation? Will you be doing pre ovulation Intralipids with Dr S? Xx

@Ifitistobesaid @Sophi81 thank you. I’m really worried about it but the baby seems fine, no issues detected at all. I had a growth scan at 28 weeks which I didn’t actually qualify for, my consultant requested one to help my anxiety. That was all fine. Baby was above average centile. Then because I had been in with reduced movements a few times (anterior placenta) I had to have another scan as protocol and they said that the growth velocity has dropped. I’ve since had Doppler checks on the babies blood flow to placenta, brain and cord and it’s all fine and now another scan on Weds to see what the plan will be. Professor Akolekar is also monitoring me closely which makes me feel a lot better. As of last week the baby weighs 3 pounds 12 ounces so nearly 4 pounds now. Hopefully they will get to 5 or 5.5 by birth. I think it will be a c section and hopefully I will make it to full term at 37 weeks. It’s just really strange why this has suddenly happened it’s been fine the whole way through! @Sophi81 was your babies slow growth from the start or later on in pregnancy? Xx

@HopefulH i wouldn’t worry too much about the quality being worse if you have more than one dominant follicle. Only the best one would be fertilised anyway - I had 4 and was hopeful for quads 😂 but just one baby! My AMH isn’t amazing but also not low. The month before he put me up to 10mg I only produced 1 follicle on my tubeless side so I think he just thought may as well give it everything and see what happens! That was my lucky month xx

@HopefulH how much did your son weigh when he was born at 40 weeks? Xxx

@Tgrf55 My son was born at 5lbs 15oz at 40 weeks gestation. He’s got lots of respiratory problems which I think are probably due to the last 6 weeks not getting what he needed - at 34 weeks (my last growth scan due to a cock up at the hospital) he was around 4.5lbs then… I’ll never know what really happened.

@Tgrf55 I might just got for the full dose of 7.5mg letrozole then and see what happens. Got to start it today if we’re going to do it! Why are you supposed to take Letrozole in the morning? Does it matter if I take it later on?

Can anyone tell me what day of super ovulation you had your pre ovulation intralipids? Trying to look at the next couple of weeks and figure out possible days I can go for it… in my plan it says any time before ovulation? And what does 20% Intralipid mean? Thanks xx

@HopefulH its bizarre that these things happen. I would have been oblivious too. In a way i hate extra scans picking up on extra little thing but i guess at least they can help now. Your son probably would have had steroid injections to help his lungs if they had monitored. But if your 34 week scan was fine then they wouldn't have thought to. Its so stressful. Xx

@Tgrf55 Yes I think he needed the steroid injection bless him. He’s on steroids daily now to help his lungs. Annoyingly after having my birth listening appointment and pregnancy notes back recently, it would seem the hospital messed up and according to my growth scans at 32 and 34 weeks his growth had started to tail off - but we got forgotten about and I didn’t realise this at the time. I think because I just had no clue and everyone was always so reassuring…

@HopefulH dont blame yourself though that’s the hospitals fault. This is why I’m so grateful to professor akolekar. He is the only person I trust. I have issues with my local hospital as they continuously sent me home when I had an ectopic pregnancy telling me it was everything but an ectopic. I wouldn’t have had to have my tube removed if they had done their job properly. X

@HopefulH sorry your son is on daily steroids. Poor thing. Is that due to asthma? X