Immune/NK issues - aka Pred Thread no. 23!

[Chickjen]

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

@MrsMargot I'm not sure where you are but if you're in London there's a nursing service where you can get intralipids for £175 - £350 seems a heck of a lot! I go to the nursing service for mine as it's open on Saturdays and from 8.15 on weekdays so much more convenient (and of course cheaper) than my clinic.

I had my FET on Monday. Just got to hope it sticks!

Thanks to everyone who replied me regarding the repeat blood tests with Dr S. I will try and speak to someone in the clinic to find out why they were done but since they have come back normal i am not going to stress over it for now.

Welcome @williteverhappen - Congratulations and good luck for your scan tomorrow!

@ginandtonicformeplease its interesting regarding the nursing service. Do they have a website I can have a look at? I am yet not at the stage where I need to get intralipids but it is on my plan with Dr S. Are you with Dr S too?

@PGJV www.insuk.co.uk/ I just ask my clinic to send them the prescription and book an appointment. I'm not with Dr S as I'm IVF, but my clinic seems to follow pretty much the same protocol.

@ginandtonicformeplease good luck hon. Plenty of pineapple core and laughter (true story!)

Hello everyone! Thank you all for your input on the progesterone. I had no idea you can do the pressaries up the front and back for this. I shall investigate! Thank you!!

@ginandtonicformeplease thank you ever so much for the tip on intralipids. I will keep in mind. I doubt Dr S will be fine with that that I do not Lois anything to have the info. I am in London and it is so much more convenient. I have a problem with work and I cannot easily do to Epsom. Thank you so so much!

I have another question. Since starting the pred I have a horrible headache every day. Is this normal? The progesterone is sending me to sleep like there is no tomorrow but I am worried about the strong headache. Should I worked?

I am so so happy for @KittyKatSmile and all the other ladies that are pregnant! This is the only thing that keeps me going. Well done!!! I really wish you all the best! You success means we have a chance! Thank you! Xxx

I have just realised that my phone has changed a couple of words! Apologies everyone!

As I said before, I have these really strong headache everyday and night and I am wondering whether I should worry. I will email the clinic but I thought to ask you too.

Also, I have another question if I may. I asked Dr S for cleft palate due to pred and he completely dismissed it (as in there is almost no pred going to the baby and this is old research blah blah blah). Did any of your doctors say anything else?

I'm sorry to bother everyone but just had a little wobble this morning worrying that 10dpo is too early to test and therefore stop the meds. The earliest I have ever seen a positive is 13dpo.

@Ultra496 hi lovely! I had a similar wobble before and told Dr S I thought it was too early for me to test. Whilst he does say there isn’t any harm in stopping at day 10 if you get a negative test and re-starting again if you get a positive a few days later, he agreed that I could take the Pred for 11 days and then test on day 12 ☺️

@Wewin I have another question about the doxycycline 🙈 did you order yours from the Superdrug pharmacy online? If so, did you just make up your answers to the questionnaire 😂 as they’re malaria tablets it’s asking me which country I’m visiting! Haha. Also how many/dosage did you request? I recall you saying you took one 100mg in the morning and another in the evening for 14 days?

@Wishing5tar Thank you so much. Gives me hope for another few days at least. Re the doxy question, perhaps I can help, I ordered it from the online Superdrug store and yes pretty much made up the answers. I think I got a total of 44 tablets about 3 days later in the post.

@MrsMargot I get headaches on the pred, more of a tension headache my whole jaw feels tense. If really bad I’d check with the nurses.
Re intralipds, i asked if I could have them up in Scotland rather than travel to London every time which is going to be so expensive. He said no, if you’re under his treatment plan you have to have them there, he said it’s for insurance as he has a couple of people who had intralipds elsewhere and got sepsis. Worth asking but don’t think he’s keen.

@Wishing5tar @Ultra26 can i ask are you just adding the doxy to your treatment plan just incase?

Well I contemplated it but haven't actually implemented it yet. I wanted to have a good few months on the pred first to see how that went. It's all here ready and waiting for if/when I decide to try that too.

@Ultra26 fab thank you ☺️ I’ll have a think which exotic country I’m pretending on visiting 🤣

@Eeviee Yes I was planning to do it this month if AF arrives in the next couple of days. It’s just a one off treatment & Wewin posted earlier in the thread some research that she’d found on the benefits when faced with recurrent implantation failure. I think it’s worth a try for me personally as with my first 3 miscarriages (before seeing Dr S) I only got a positive pregnancy test after I’d had what I thought was AF. I always felt like my body wasn’t letting the embryo implant until it was too late, I’d start bleeding and then it’d find a way in 🙈 I sound crazy don’t I?! 😂 Dr S said that a BFP only after a heavy bleed was probably the first sign that I’d miscarry but I can’t help but feel like something is going wrong at implantation.

Evening ladies, I had my 8week scan today and baby still has a HB and measuring 8+1. I couldn't stop crying as I was certain something had gome wrong. @kittykatsmile I used your mantra and it has helped me on waking in the morning. Thank you!x

My fibroid is still there and the same size which I suppose is good as it hasn't grown and my consultant has said not to worry about it. I'm still getting mild cramps and back pain so still can't fully relax, I suppose this is normal given everything.

Next milestone in 2weeks for 10week scan!

@MrsMargot I also got headaches from the pred whilst TTC and still get headaches but not sure if they are now pregnancy related.

I had 2 chemicals before this positive whilst on the pred regime and believe what also helped me was acupuncture. It may be a coincidence as I got my BFP in the first month of trying acupuncture. It may be that it also allowed me to be more relaxed?

Congratulations @williteverhappen that's amazing news! Can I just ask where in your cycle you were when you started acupuncture? And how often did you have it?

Hi ladies, has anyone had the moon face from pred? How long does it last? I've only been on pred for five days and I swear i'm already getting it! My dh sees it too! Please tell me the moon face will stay its current size and won't actually 'grow' if I have to be on it for a while.

congrats @williteverhappen, another positive story to give us ttcers hope!xx

Thank you @FrannyAnny82 🙂 I started acupunture on CD2 (it just happened to work out that way) and I did it weekly. One of the sessions was a day before I ovulated (this was also coincidental). I'm currently still doing it weekly but my acupuncturist has changed some of the needles (none in stomach) and she places them in very gently with a tube guide rather than freehand. I definitely feel better after each session and it helps that she also has a bit of a counselling session with me before she starts. Let me know if you would like to know more x

Thanks @zoe16 x I am yet to get a moonface but fully expect it will come. Though, from what I've read, it goes soon after weaning off/stopping the pred x

Thank you @Eeviee and @williteverhappen. It is reassuring that this headache is kind of common. Today it has been better. Strong but not as bad. It could be that my body is adjusting. I hope this is the case.

@williteverhappen SUCH good news!! Well done!! I can totally see myself crying from happiness when the time comes! 😘😘😘

@zoe16 I haven’t noticed the moon face yet but I have certainly ballooned. In my last pregnancy I was taking 10mg pred for a couple of weeks (until mms) and the only thing I noticed was the bloating. I am now on 25mg so I am waiting to see what happens. 😬.

@williteverhappen this is wonderful news. Congrats!

@zoe16 I got the moonface as well. And all over my body too. It didn't go until I stopped at 12 weeks pregnant. My friends who last saw me just before then have commented on it as well.

@MrsMargot I had the headaches but only when I came off every month. I also had them brutally after I'd come off at 12 weeks but that may have just been pregnancy.

@FrannyAnny82 I had acupuncture throughout. I found it very helpful although it's of course hard to tell if it has any effect.

@KittyKatSmile well that's the thing, I'm going home in two weeks and will probably run into family and friends that I haven't seen in a while and I know for sure they will see it but they won't know the reason for my moon face! It's not too bad right now and i've been laying off the carbs and salt in hopes that it won't grow anymore lol. I will stop pred in a few days if bfn....but hopefully not and i'll keep my moon face ;)

@MrsMargot i've got the bloating too, luckily I can hide it well with clothes!

Thank you so much @williteverhappen that's really helpful. I'll give it a go as getting sick of chemicals! x

@FrannyAnny82 how many chemicals have you had? And have you had them on the pred treatment? I'm getting really paranoid that I'll keep having them despite the treatment (I've had 4 already and this is my first month in the pred treatment)