Immune/NK issues - aka Pred Thread no. 22!

Hi all,
Really struggling to follow everyone’s stories! @chickjen so sorry to hear your latest news.

Bit of a surprising update from me. After the CP I had a bleed just a few days later than my period would have been due. Then figured I’d stick to the plan and give it another go on the pred/Hydroxy whilst waiting for my follow up with Mr S.
Thought I was was about 9dpo on Tues and tested and got a really strong positive! Even stronger line this morning.
So... here we go again. The earliest I can do intralipids is next Weds as we are away.
All a bit surprising.

Aww best of luck ladies it’s so lovely to see the fresh wave of optimism 🐣💐🌞🌱🌞💐😀 🤞x

@KittyKatSmile great to hear from you lovely 😀 I'm glad your appointment went well and you have a plan. Can you start straight away and will you still be using the pred etc from Mr S or can they do all that for you too? I have been thinking of you and hope the 'home' situation is alright ❤️

@DaniMERL thinking of you too and hope you are ready to try again 🍀

My miscarriage finished yesterday so this weekend I'm going straight to the pharmacy to order the humira and presuming it works should be able to try again properly in June 😀

Ladies! I'm missing you all.

Went to Zita West yesterday where my lovely doctor rejected Mr S's cruel conclusion about the blame sitting with me. He said there was no way we could possibly know. He just wrote me a new plan and didn't even mention the fact that I'd be using donor sperm for this round of IVF instead of 'using' my partner

I hope you're all doing ok. I think about you all lots. Have a lovely Easter x

@Chickjen hope that you are doing ok lovely x

@Maranello4 good luck with the bloods

@AcornHill My sticky blood was diagnosed through two lots of blood too. I think you have to test positive twice for the antibodies for it to be a conclusive diagnosis.

As for me, went back for second biopsy today at Coventry with Professor Brosens, he has prescribed 20mg pred daily from bfp and cyclogest from day 21. This is in addition to heparin and aspirin due to sticky blood. This was pretty much what I expected. Plan to start trying to conceive again in June, so for now going to focus on me for a couple of months, before rejoining the merry go round again.

Hope you are all ok. X

Welcome @Maranello4! The test is just a blood test, but it may be expensive and they may need quite a few vials, unless that was just me as I had a few other tests at the same time. If the level is found to be high you will likely be prescribed a low dose of steroids to calm the immune system. We are all mainly being treated for recurrent miscarriage but presumably the theory is the same.

@AcornHill I wish I had paid more attention now! I was sitting under the window with my eyes shut as I had the most awful headache. It did cross my mind the headache could be a pred symptom as I was a few days in to taking it for the first time, but really I think it was a combination of stress, worry and not eating dinner on Sunday! I was really worried about lack of sleep as I do sleep a lot, but thankfully I didn't notice any side effects at all, and none since I stopped either. If you have already survived miscarriage and work I'm sure you will be fine with the pred 🍀

@Acornhill completely understand your worries I fretted and fretted before I began taking them but for me personally the only side effect I had was incessant hunger, and to be honest that could have actually been because I fell pregnant at the same time. I know others on the thread have had withdrawal side effects. My advice would be that everyone is different and you just need to try and see how you feel on them. There are alternatives to Pred if you really don’t get on with them. Good luck Hunni and try not to worry to much. Move forward to take each day as it comes 💐

@Acornhill I was probably there after you - 11.45 and he was running well over 30 mins late so 3 other people had to go in before me while I waited

@AcornHill, yes, these ladies are special alright and you certainly have found a new group of friends.

I am on the same protocol as you. The only side effects I've had are when I come off the prednisolone when not pregnant but fingers crossed you won't really have to do that. The cyclogest can get messy, my advice is to try the back door...!

I also found it annoying that I had to eat breakfast every day to take the drugs; does that count as a side effect?!

@Chickjen, thinking of you. Good luck tomorrow hon xx

Wow thank you for the welcome, I feel like I have found a whole new group of friends.

@Chickjen (I hope all is ok?) and @DaniMERL I was also at the clinic at 10am on Monday! We were probably all in the waiting room at the same time!

I have been told to take pred from ovulation for 10 days along with Cyclogest and Omeprazole and I'm really worried about the side effects particularly as no one at work knows about this treatment.

@fnej01 Dr Shehata thinks I have Hughes but testing me again in May. My Abs came back at 95.

x

Hello! I'm new to the thread. About me: I'm 41 and Mum to DS who was a Clomid baby, now 5. Since then I've had unexplained infertility. I'm now at BMI Chelsfield. Had first round of IVF in Feb, all stages went well and then no period but a BFN. I've been referred for an NK CD69 cell assay test. Looking for advice on what to expect and any sources of information you've found useful or questions I should be asking.

Be aware my EPU won’t let you self-refer but I think this is unusual. They require you to get referred for GP first, even when you have ectopic symptoms and the GP sends you directly to A&E. Ridiculous, I know.
Good luck to you xx

Oh good luck ☘️ @chickjen. Hopefully you can get to EPU tomorrow morn, they should be able to scan you too.

Thanks @Sunshineblonde1 😀 They are only open in the morning, plus I'm at work which is 40mins away so can't just sneak out. I might try the GP though in case they have something out of hours, but then she's not always very helpful 😕

You can go to either @chickjen. Can you get to your local EPU? Given history they should see you same day.

Thanks everyone 💝 I've never had HCG tested before, is it by the GP or EPU?

@Chickjen really hoping you are wrong. Many a doctor and midwife have told me that line colour isn't a good way to monitor things. So thing the previous advice to get some bloods is sensible. But I am the same as you with wanting to see line progression and know exactly what you mean re pit of stomach feeling. Sending hugs xxx

Praying you are wrong @Chickjen please get your hcg tested and are you bleeding or in pain? I hope it's not true. 💔

@Chickjen I'm so sorry. Are you sure though? Don't rely just on those tests. See if you can get your hcg tested? Thinking of you darling girl and praying your stomach is wrong x

Oh no @chickjen are you sure? I know what you mean by that feeling 😢 I hope it isn’t true and is just fear 😟 x

Looks like another mc for me. I woke up in the night with that feeling in the pit of your stomach when you just KNOW, so I tested this morning and the FRER is no darker than last week. I think the meds are just prolonging something that was never going to be so I have stopped them all. I guess it was too much to hope this one would be any different when I haven't followed the protocol fully 💔

Thanks for the messages @Sunshineblonde1 @Chickjen - I am trying to chill about it this week at least until my appointment Friday which I am sure will increase anxiety levels again. DH is worried I was shortly be able to write PhD in this stuff 😂
That sounds like a tough decision to make @DaniMERL thinking of you x

Ladies have any of you got a sticky blood/Hughes/aps diagnosis also?

Thanks for the messages @Sunshineblonde1 @Chickjen - I am trying to chill about it this week at least until my appointment Friday which I am sure will increase anxiety levels again. DH is worried I was shortly be able to write PhD in this stuff 😂
That sounds like a tough decision to make @DaniMERL

Ladies have any of you got a sticky blood/Hughes/aps diagnosis also?

Tea = read, bloody autocorrect.

@fnej01 and just tea about your honeymoon wahoo! Congrats! That’s perfect timing you can go away and leave these troubles behind. Drinks cocktails, get some sun and pamper yourself. You’ll come back in a much better place. Where are you honeymooning? X