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

996 replies

Chickjen · 11/09/2019 22:33

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

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PGJV · 31/10/2019 14:12

@Worried82 sorry don't have an answer to your question.. but there's quite a lot of info about pred in general on Webmd so do check it out..

I do have a question of my own though - anyone feeling extremely hungry all the time while on Pred? I was like an eating machine yesterday. I am trying to control myself today and not snack at all but finding it so difficult!

Worried82 · 31/10/2019 15:35

@PGJV Yeah, I was starving! I know it’s bad but I couldn’t stop eating Christmas chocolate coins Confused. But the insomnia was the worst part for me.

PGJV · 31/10/2019 15:40

@Worried82 its bad really - I was constantly eating yesterday but have been trying so hard to be good today. Not sure how long I will be able to continue though!

Its interesting regarding the insomnia - I did read that sleeping difficulties is one of the side effects of pred but I am experiencing the opposite.. I am constantly feeling tired and sleepy.. Its funny how these meds affect us in different ways..

ginandtonicformeplease · 31/10/2019 17:53

@PGJV I had the raging hunger last time on pred. I haven't had it yet but I'm sure it'll kick in! I didn't notice any difference in my sleep patterns when I previously took it, but I started taking it on Tuesday and I've been exhausted ever since, even though I've been sleeping longer than normal.

MrsMargot · 31/10/2019 18:58

@Eeviee the world is small! :) yes Annie is great and I am very thankful to both Annie and Jo! I am now hoping for the best outcome!

By the way, good to know about the heparin and what it starts. It seems that I am lupus anticoagulant positive and next time I will be on heparin. It is odd because in 2018 that I did the first test I was negative.

zoe16 · 31/10/2019 19:25

@Eeviee and @KittyKatSmile did you inject clexane/heparin yourselves? Any tips how to inject it so its not too painful or cause bruises?

KittyKatSmile · 31/10/2019 20:02

@Worried82, yes I think it's fine to drink. Sometimes I would drink a bit anyway on the tww; drink til it's pink, as some say.

@PGJV yes, i was starving on pred. I put on quite a bit of weight over 6 months of taking it, but I lost it quickly doing 5:2 before starting ivf.

@zoe16 I did inject myself with the clexane, yes. No tips I'm afraid on how to make it not hurt. I actually started a thread on the matter when i started injecting; have a look and see if people's tips help. I didn't really find much helped but just know that you're not doing anything wrong (sorry!)

PGJV · 31/10/2019 20:34

@ginandtonicformeplease that’s exactly how I am feeling at the moment.. exhausted even after getting more than usual sleep..

@KittyKatSmile that’s good to know it’s not me alone.. I’ll try to eat sensibly for as long as I can and see how it goes..

Also I am feeling weird abdominal cramps today.. can’t decide whether it’s more like cramps or pelvic pain..

PGJV · 31/10/2019 20:37

@zoe16 havent injected clexane/heparin to myself ever but one of my friends uses ice to numb the are before injecting.. may be that might help? Also not sure if she is on clexane/heparin, it might be some other injection but I guess numbing the area prior to injecting will help with just any injection right?

Eeviee · 31/10/2019 21:29

@zoe16 I did it myself, i didn’t find it that bad. Just difficult to find a non bruised part, but if it works its worth it.
I’ve still got bruise marks 3 months later but maybe it’s worse as I’m in aspirin. Don’t worry about it, you’ll be fine x

zoe16 · 31/10/2019 23:51

Thanks @KittyKatSmile I’ll do some digging.

@PGJV ice sounds brilliant, I’ll give that a go.

@Eeviee it will absolutely be worth it if it works, I’m probably just anxious about it right now.

Wewin · 01/11/2019 00:13

@PGJV I’ve put on a few pounds since on the pred and have a lovely round face now. I don’t mind so much as it disguises my wrinkly neck. My DH is a lucky man hey?! Grin

Eeviee · 01/11/2019 08:06

@zoe16 of course , it’s absolutely understandable. I know some people get their OHs to do the injections too and some don’t bruise, numbing with ice can help too.

@PGJV I’ve read that an increase in appetite is common with the pred. Im trying to eat extra protein to help me feel fuller x

PGJV · 01/11/2019 09:28

Sorry I’ve been asking too many questions these days.. but anyone experiencing abdominal cramps? I am feeling something in my abdomen every time I move, bend or cough.. it feels like it’s related to my pelvic muscles.. I read somewhere these could be the signs of an ectopic pregnancy.. haven’t said a word to DH though as he’ll ban me from using internet if he finds out I am googling about all this..

Wewin · 01/11/2019 10:53

@PGJV sorry to hear that. Have you taken a pg test? If it’s positive, then potentially it might be but if it’s negative it’s probably not. In either case, you should go see your GP. Check and see if you’ve a temperature in case of infection too just to rule that out.

PGJV · 01/11/2019 11:21

@Wewin I am only 6 dpo at the moment so haven't taken at pg test yet and not temperature either. I am just trying to stay positive and think it might be the implantation causing these little cramps? They are not painful at all. I am due to take the test on the 6th.. will see if i can wait it out till then or will definitely go see my GP or call Dr S's clinic if the symptoms get worst.

PGJV · 01/11/2019 11:22

sorry too may typos there in my previous message..

Wewin · 01/11/2019 20:18

Hi @PGJV - I’m 7-8dpo too. Well that explains the cramping then. Implantation can be briefly quite painful for some. It’s far too early for any ectopic pain so try not to worry about that. Other sources of pain can be an ovarian cyst but hopefully it’s implantation!

I normally get implantation pains but haven’t this past few months and bfn’s. So I imagine it’ll be another bfn for me Tuesday Sad. I was super irritable and tearful this week and feeling very very depressed but today I’m absolutely fine again and it’s all lifted. So I’m guessing if I was pg, then my mood would be awful still. But I live in hope! Smile

PGJV · 02/11/2019 18:06

@Wewin sorry you were feeling that way.. I am feeling extremely irritable today! All these hormones! Will find out next week! Fingers crossed for all of us :)

Worried82 · 02/11/2019 21:49

Good luck everyone! Just wondering, has anyone had any spotting while on pred and cyclogest? I’m now 12dpo and have been spotting since 8dpo. I’d hoped it was implantation but BFN. Thanks!

Wewin · 03/11/2019 13:41

@worried82 yes! I get spotting now mid-cycle. It was actually like mini AF. I’ve no idea what’s going on with me. Think I’m going to go back to OPK’s this month just to check I’m ovulating.

Bfn at 10dpo today ladies. Does that mean I’m definitely out this month again? I’ve zero symptoms apart from moodiness of course. Feeling depressed about all of this. I do still prefer bfns to cp’s though.

I might skip the steroids this month. I lowered to 10mg this month and still no success. Going to use OPK’s again and temp a few days before and after ovulation just to confirm.

Wewin · 03/11/2019 13:42

I’m going to go organic decaf coffee. What’s good to buy on Amazon please? 🙏👍🏻

PGJV · 03/11/2019 15:21

@Wewin don’t be disheartened although I do totally feel you.. it really is hard! There was a recommendation for this coffee on this thread that I am going to try.. grumpymule.co.uk/shop/organic-seasonal-decaf-swiss-water-processed/

Also I do feel OPKs are good until they don’t stress you out. I do find them stressful but this month I used them only to decide which day to start the pred because last month I think I started pred a day early and it did mess up my ovulation I feel.

HarrietM87 · 03/11/2019 16:29

Quick question - when I was with shehata for my son the protocol was not to take cyclogest until bfp, but he told me to take it from ovulation this time. BFN for me at 10dpo so that was my last day of cyclogest. I’m 12 dpo today and expecting period today but no sign and I guess the progesterone might delay it? How long does it usually take for your period to show up after stopping cyclogest? Want to just move on now!

Wewin · 03/11/2019 17:41

Thank you @PGJV I’ve ordered grumpy mule coffee as it’s organic and Swiss water processed. I’m a right grumpy mule so it’ll suit me! Did you have any success this month?