Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
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Yay @Gizmo1983!! So happy to see this update. Why do you need to stop the blood thinners? When is the NIPT? Will you ask Dr S advice?

@Hopeandfaith1990 thank you so much sweet. So they managed to let me do the old test which apparently doesn’t matter if you’re on them or not. But the new tests ask that you stop them for 24 hours which I’m not sure how I would have felt. I can’t ask mr s as I’m not with him anymore but definitely something to bear in mind. Apparently it means there’s less dna in the sample so it is more likely to give a false negative or inconclusive result. I’ve still done it anyway so will see what it brings. I’ll ask my consultant see if the nhs version of the nipt is the same xxx

@Gizmo1983 Brill news re the scan. So happy for you :) xxx

@Objectiontime thank you so much ☺️ have eaten a whole Punnet if grapes and can’t move as I now feel extremely sick 🤪🤪🤪🤦‍♀️. This journey ain’t for the faint hearted xxx

Thanks so much @Objectiontime, same to you. I have everything crossed for you this week!

@Gizmo1983 that's brilliant news, so relieved for you.

@Deerdancer34 do you mind if I ask if your GP ever had an issue with you requesting the well being bloods? Mine did it the first time but is now refusing, saying it's out of NHS scope. Just trying to save where I can the cost of it all is quite stressful!

@Hopeandfaith1990 thanks for sharing that - interesting to hear her protocols! Hope you receive your results soon and that they are positive to move forward

xxx

That made me laugh 🤣

Thank you MC8, will update after xxx

@Objectiontime am I right in thinking your scan is Wednesday? Xxx please forgive me if I’ve confused dates with something else xxx

@MC8 Ooo it makes me cross that does and how different GPs do different things! Is there a GP there you like & trust? At my last GP and I've just moved to a new one, I booked an appointment with a Doctor I liked and explained my story because I thought it might help. My last one did all Wellbeing bloods without me asking. This new one has agreed to do all the initial blood tests they can, so I'm hoping they will do the Wellbeing ones when I get started again.
On a different note I tried to get steroids through my last GP and she would have done but she wasn't allowed without hospital consent and then the Consultant I saw at RMC refused them even though the lead consultant said they did give steroids. Since I have moved, I will try again at this new GP to see but I imagine it'll be a no but annoys me because I know some ladies on here managed to get steroids from their GP!
It may be worth booking an appointment, is there someone who knows your history? Makes me so cross when all I wanted and what we want on this group is some help and to be scooped up and looked after, I felt very abandoned by the hospital tbh.

@Gizmo1983 I can't tell you how happy your news is making me, keep putting one foot in front of another 💪

Sending lots of love to those who have got scans and appointments coming up 💕

@Hopeandfaith1990 i also listened to the Podcast with Dr S and found it really informative. I found it interesting how he said we offer occasionally Intralipids. But they have made out its essential. Also hope you're coping ok in this waiting game. A holiday sounds perfect and maybe just get your body ready for a transfer and do it on next cycle. where do you think you will go?

@Fletchasketch - it just the wellbeing bloods every 3 months. I do think he would want to see you after 3 months if after three months of TTC and not pregnant - as he might talk to you about super-ovulation etc.

Welcome @MC8 - i am so sorry for all your losses. It really sounds like you have been through it. The fact that the last two losses were chromosomally fine is a headfuck since you were on the protocol. I am also so sorry about the IVF and PGTA results, so strange that all were abnormal and yet MCs come back fine. I have had three losses on DR S protocol, two were chromosomally fine, but i think i didn't have my immune system suppressed enough. What meds has he put you on? My latest loss was at 12.5 weeks and that was confirmed for be chromosomal abnormal. So I think i am on the right protocol now, but need to make sure all ok chromosomal, so heading into IVF with PGTA testing in the next couple of months. Thats bullshit from the GP, i would ask again or even consider swicthing GPs - they should be able to do this for you. I get Progesterone from my GP, but they don't prescribe the steroids or Hydroxy - i have asked but they won't.

@CarpeDiem75 I am sorry you have missed this months TTC, you never know though - you could have still caught it. hope you had a nice time away - sending lots of love.

@Gizmo1983 - i had a dream that i read it all went ok for you and woke up this morning and checked and so relieved for you. Fingers crossed for the NIPT results. when should they come back? This consultant that you are seeing - are you more or less paying the same as you would with CRP - just minus the travel?

Hey @Jecca88 wow how strange is that? My consultant this time is with nova fertility. I’ve got exactly the same protocal as with CRP. Steroids, hydroxy, progesterone fragmin aspirin. My consultation was £200 and then it’s the price of the meds. You can choose your consultant they have the list. It’s all done over the phone and she advised intralipids which I get from cherish I think they are just under £300 but you wouldn’t have to have them every month while you are ttc it’s up to you when you have them.
I then paid a private gynae up here when I first found out and she checked my bloods and things that was £200 a consult. I’ve been doing intralipids every 3 weeks even though I have no idea if they do anything or not.
i just found the thought of going back to CRP so triggering after our last time there and its a 7hr drive each way we just decided to try this way this time xxx

@Deerdancer34 thank you so so much for your kind words . It’s really blown me away how much harder I’m struggling to cope with each pregnancy I thought I would get more numb to them and actually deal better but I think it’s the opposite and the further along I get the more attached I think I’m getting.
just to note I tried a few time and never got any free bloods or meds out of my gp, I’d have really appreciated the blood tests as they cost a fortune and didn’t half stack up with the intralipids and the meds xxx

@Jecca88 I need to watch that podcast because it's annoying that the intralipids are expected now. When I started with Dr S, it was only supposed to be until 16 weeks and then when I did finally conceive, it changed to needing them until 20 weeks. And someone mentioned that it's only since Covid he does it at preconception...They are so blooming expensive and when it doesn't work, it's a lot of money down the drain...

@Gizmo1983 I think it's hard not to get attached. I tried not to but it didn't work...so in subsequent pregnancies I changed my mindset to be, I am pregnant, enjoy it whilst you are because whatever happens I'll have to deal with it at that time. It actually helped to reduce my anxiety, even though I had more losses but then I just dealt with them when they happened if that makes sense.
I can't believe you couldn't get bloods, I feel all of this is so unfair. Why shouldn't we be helped by NHS, the one time we ask for help 🥺
Anyway, this is a positive time for you, you are doing this 💕

@Deerdancer34 thank you so much sweet, i actually sat down with myself after and thought you could just celebrate what time we have coz it is going to hurt like hell if if goes wrong whether I enjoyed it or not.
im 99% sure what happened with mr s and the intralipids was they weren’t compulsory for ovulation but when covid happened they didn’t/couldn’t give steroids so they moved to intralipids then when covid was over they kept with pre ovulatory intralipids. This I read somewhere so forgive me if I’m wrong.
xxx

Hey guys so after having a long hard look at myself in the mirror, realising mental heath wise I’m probably a lot worse than I realise and what state am I going to be in going forward I decided I would go to my gp about going on antidepressants I think I may have pretty bad ptsd but also may be wrong. I googled hydroxychloroquine and sertraline and there seems to a a significant interaction on the heart 🤦‍♀️🤦‍♀️🤦‍♀️ has anyone come across this I’m now panicking that I may not be able to take any meds and may have to cope inside my own head ( I’m not in any danger to myself or baby I’m struggling as so desperate to stay alive so promise no danger of that just know i probably could do with some professional help to make sure I don’t get worse ) xxx

Hi everyone, hope you’re keeping well.

CD1 again for me today and we found out this week our dog needs to be put down. Life feeling very heavy.

Out of interest how long have people taken to fall pregnant on the Hydroxy / Pred / progesterone protocol? This is my 4th month now and concious I’ll have a review next month.

Came on my period today before even getting to the 10 days of pred / progesterone and having to do the pregnancy test which feels odd. I thought progesterone would have prevented that

@Gizmo1983 - I know i remember thinking about you last time and when you lost your baby at 10 weeks and i was heartbroken for you - clearly you're on my mind, so glad you got past this stage. Totally get why you didn't want to go back to CRP, sounds like the new option is actually cheaper. Did you provide your blood tests results to get the prescription? I am so sorry to hear you're struggling. So i have been on Sertraline since my first loss - 50 MG and when Dr S put me on Hydroxy - he didn't mention any side effects or issues with the combination. He was concerned about steroids - but that was due to how steroids effect your moods/sleep etc - not actually how it interacts with the sertraline. Can you speak with the GP or your consultant? I think anything that helps - even if it is meds with anxiety/depression and mood is so important. I would also say - can you get any therapy?

@Deerdancer34 that is interesting and i am like you - its so costly - especially if every month you are having them TTC with sometimes no result.

i am so sorry to hear about your dog @SWMum9 - i lost my nearly 10 year old dog at the end of April and it has honestly been one of the worst times of my life and such an accumulation of grief with all the miscarriages. I miss him every day. Try and take care of yourself. Have you taken a test today? I had this last year and it was implantation bleeding and didn't show positive on a test till 2 days after the bleeding.

So sorry to hear that you went through the same thing. My husband and I are devastated. All the miscarriages and now our first baby will be gone soon 😢

no I haven’t done a test. I think it’s too much blood for implantation but I’ll do one tomorrow morning x

@Gizmo1983 i take hydroxychloroquine and 50mg sertraline. My consultant didn’t mention any issues

@SWMum9 i am so sorry you're going through that. i really feel for you.

Ok - fair enough about the test! It has only ever taken me 2 months with CRP treatment to fall pregnant. This month will be my 2nd month of TTC since last loss and testing friday :( - dont feel i have much hope, also can't really think straight in this heat. I think after three months of the protocol with DR S - he would ask to see you again if you haven't fallen pregnant to see if he needs to change any meds or super ovulation.

Hi all, I have never heard of sertraline. What does it do?

@Gizmo I do get what you are saying and hope you get the help you need. You may well be right about the PTSD and it is not surprising really. There are probably a lot who suffer with this after the trauma of miscarriage.
@SWMum9 So sorry to hear about your dog, that is so sad and I've been there so I know!

Interesting about the thought that Dr S might have you back in to consider changing meds/consider super ovulation after 3 months if not pregnant. That just doesnt seem very long?

I’m under Dr S but in the NHS so I’m not sure how it differs to CRP private clinic. I emailed the midwife today for advice but I think they will see me after 5 months. I’m wondering whether to pay for the infusions privately (not available on NHS) or perhaps find out more about ovulation induction.

Either way I’m feeling a bit desperate!

@Objectiontime I think it depends how you feel and I'm sure if you wanted to give it longer, he will let you? I can't comment on that because I felt in such a desperate state after all the miscarriages and then 3 months of paying for something that hasn't worked...but I was in a very bad headspace. Seeing Dr Edge and her giving me another option (Superovulation) was like a light at the end of a long dark tunnel!

@SWMum9 I imagine the difference will be, CRP offer the meds and extra treatment that the NHS can't and also can offer it faster but I don't know what he's allowed to offer or not at his hospital- eg my hospital wouldn't do steroids but he can? What are you on again & how long have you been on it?

@Objectiontime hey sweet just want to wish you good luck today for your scan xxx

@SWMum9 hi , I am on the same boat as you, I am under Dr S in the NHS, I will be interested to know what alternative treatment they will offer you when you have your review! When I was unable to take hydroxy I begged them for something else and they said that’s the only drug they can offer..(I was also under prednisolone) … I don’t think they will prescribe the infusion under the nhs. I am doing super ovulation but in private at the Epsom clinic (Newlife). I have been doing it on and off for the past 2 years. I got more pregnant but they still wouldn’t stick!