Immune/NK cells pred thread #32

[VenusStarr]

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed.

@Gizmo1983
@fleur89
@Sunflower360
@MotherOfShihTzus
@lozzmax
@HopefulH
@kea1990
@Sprinkleofbabydust
@Newbeginnings22023
@star2022
@RumandSpinach
@Ems123456789
@MamaW05

Love to all ❤️

@Hhdxx who is overseeing your care with Tommys? I know my Shehata plan was to wean Pred from 12 weeks but since being under the care of Prof Haezell I've decided to go with his protocol as it's focused on prevent loss happening in all trimesters where as I think Shehata it's more a generic protocol to prevent miscarriages that are immune related. My little boy was born small at full term and I've since had missed miscarriages so that's why I'm on the hydroxy and the longer term prednisolone x

@HopefulH thank you for explaining. I have already weaned down to 10mg from 20mg because CRP had told me to but now I'm regretting it.

My baby is already measuring right at the bottom of normal so I'm really nervous about this. They have ensured me that it's not from taking the steroids.

How many weeks are you? Xx

@HopefulH Sorry I didn't answer your question. Professor Heazell is over seeing me at Tommy's. X

@Hhdxx I'm actually seeing Prof Haezell tomorrow for my first appt to start weaning. I'm 17+2 weeks. How are you finding Prof Haezell? I guess I'll find out more tomorrow how things are looking so I'm feeling nervous about it. At all my scans so far baby has been measuring about right.

@HopefulH I wish you the best of luck. He seems really friendly and caring. I hope it all goes well. Xxx

@HopefulH are you still on 20mg?

@Hhdxx thank you 🤞 I'm still on 25mg... Shehata wanted me on 25mg so I was nervous about being on 20mg as I had a mmc on 15mg before this pregnancy. I'm hoping Prof Haezell won't mind that I have kind of merged the two protocols!

@HopefulH He didn't ask me about my first trimester losses. He was more focused on the abruption that I had with my daughter. I'm only on 10mg at the moment and I'm worried that I've weaned off because I listened to CRP.

Xx

@Hhdxx I'm so sorry that sounds so stressful. How often are you seeing Haezell? Is he happy you being on 10mg now? Xx

@HopefulH I'm going back in 2 weeks as gone artery wasn't performing as well as the other. He thinks I'm on 15mg but I'm on 10mg because London said I should wean off. I'm kicking myself now for weaning off and hoping everything is still ok.

I didn't see professor Heazell until I was 17 weeks 5 days as he was on leave I think.

Xxx

Hi @HopefulH if you don’t mind me asking what is your protocol I’m with shehata but had a 15 week loss so wondering if I should push to stay on things longer xxx

Hi @Gizmo1983 I'm on 25mg Pred and have been given the go ahead (I'm 17 weeks) to start weaning now by 5mg per week so I'll be off the Pred by 22 weeks. I'll be on the Fragmin, 150mg aspirin and hydroxychloroquine until the end. I'm dropping my cyclogest now down to 400mg daily until around 28 weeks. It's definitely worth asking if you could stay on the Pred a little longer! How many weeks are you now? You might be able to get some Pred from your GP if you start trying to sort it now - so you can continue on the pred longer regardless of what Shehata says. I know he can be quite dismissive sometimes.

Thanks so much @HopefulH i thinking feel much for comfortable staying on them a bit longer I’ll be in the hydroxy till 40 weeks. I’ll have to ask him I can extend the steroids and maybe the fragmin. There was never any cause found for my late loss so I’d just rather throw the kitchen sink at it. I had a cervical ectropion last pregnancy ( nothing to do with the loss) and I’ve started having that same brown discharge again 🤦‍♀️🤦‍♀️🤦‍♀️ I’m hoping that’s all it is. I’m only 5 weeks 5 days so still so early xxx

@Gizmo1983 hey. I'm so sorry you've had a late late. I had a third trimester loss. Just to give you the heads up, crp dismissed all the advice given by professor Heazell, including staying on steroids and blood thinning injections too. X

@Hhdxx im so sorry for your late loss 15 weeks was bad enough i can’t imagine any later. That’s a shame about CRP did they give you any reasoning or just a flat out no. The amount we pay them you’d think they’d negotiate. Did you go somewhere else x

@Gizmo1983 thank you. It's been a really rough journey. My baby lived for two days.
They just said no. I've found it really really stressful that crp have disagreed with the rainbow clinic. Crp have been amazing getting me this far but it's really hard knowing who to listen to x

@Hhdxx I'd reach out to professor Haezell. He will prescribe you what he thinks is necessary. In my experience he is very reasonable. If it's making you feel uncomfortable then I'd listen to your gut and go with the more medicine is best approach. I openly told Haezell I have merged the two protocols - his and Shehata's and he was super chilled about it. I'm so sorry it's stressing you out so much. At the end of the day it's your body and baby so the risks are yours to take - and Haezell doesn't think there is any harm at all in taking the Fragmin and aspirin 150mg until the end, along with the hydroxychloroquine. So that to me is a no brainer. The prednisolone is a bit different. Does he want you to stay on your 10mg dose until your next scan with him? Xx

@HopefulH thank you for getting back to me. He said 15mg for two weeks then 10mg for one week then I'll go and see him x

@Hhdxx and @HopefulH is dr Haezell private or how would I contact him if you don’t mind me asking xxx epson is about as far away as it can possibly be so any closer up the country will on ly be a bonus lol xxx

@Gizmo1983 you can privately email his secretary but I think as he runs the Rainbow Clinic at Tommys (on NHS) it's normally ladies that have had a stillbirth, neo natal death or have been identified as having certain conditions in pregnancy that are referred to him. I might be wrong. I'm not sure on your past and history of course.

He took me on because my little boy was born very small at full term and had IUGR and I've since had consecutive losses so I'm being treated preventatively for CHI which is an immune condition in pregnancy.

I'd say it might be worth a shot contacting him and explaining your situation. He's very nice and even if he can't take you on you might get an alternative opinion on your protocol based on your history. Xx

@Hhdxx so sorry i had missed your baby was 2 days old that must have been so terrible im so sorry xxx

@HopefulH thank you so much I shall have a go at contacting him I have nothing to lose I’ve been on the Tommys waiting list for about a year and a half now 🤦‍♀️. I had an autopsy of the baby and there was nothing wrong genetic or anything found. I do have an incompetent cervix but I’d already had my stitch in so it defo wasn’t that the r said she’d guess placenta failure but that was just a guess x

@Gizmo1983 did you also have pathology of the placenta carried out if they suspected placental failure? Xx

@HopefulH unfortunately not I had a d and c so it was destroyed xxx

I'm so sorry 😞 it's so frustrating that they don't automatically do pathology when at the point of D&C they have no idea on the cause!