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

@Wewin I haven’t done a pg test yet.. not due to do it until Wednesday.. I felt abdominal pains 5 and 6 dpo but nothing now.. no signs.. but keeping my fingers crossed..

@PGJV sorry I thought you were due to test today. I hope you’ve been successful this month. I’ve not had any cramping at all, nor any other symptoms. I know they say you’re not out til AF shows but when I’m pg I usually have strong early symptoms and cramping. So I’m feeling deflated but will be ok again in a few days.

@Wewin I will keep you posted. I hope too that its worked out for us this month as I was given pred and cyclogest only for two cycles so if I get a BFN this month I will have to make an appointment with Dr S to see him again.. I just feel that's such a waste of time and money! are you with Dr S too? Sorry you might have said earlier but I think I missed.

@HarrietM87 last cycle I got a BFN at 10 dpo and thats when I stopped cyclogest. AF arrived on day 29 of my cycle which was a day or two later than my usual day 27 or day 28. Hope that helps.

@HarrietM87 mine arrived a day early, so 13dpo which I was pleased about as my cycle is already long and I don’t want it eking out any further!

Hello ladies,

Do any of you use (or used ) clexane or heparin before? I have a few question if you do not mind!
Thank you!

@MrsMargot I've used clexane previously - out of all the different injections that one was the one that hurt the most! Nothing seemed to help.

@ginandtonicformeplease thank you for the quick reply. Did it make any difference? Also, excuse my ignorance, but is clexane a form of heparin? I have a letter from the NHS saying that I should start heparin next time I am pregnant but Dr S mentioned clexane.
He also said ‘it is a massive inconvenience and I should repeat the lupus anticoagulant test to see whether I need it or not’. I do not mind the inconvenience at all. I am trying to figure out whether it made any difference and how you were taking it for.

@MrsMargot I've taken it too. Always hard to say if it's made any difference of course but I'm currently 22 weeks pregnant after 4 previous miscarriages and this is the first time I've taken clexane. No idea if it's a type of heparin. Good luck.

@KittyKatSmile ah fantastic!! Thank you! Do you still take it? Xx

@MrsMargot Yes I think it's a brand of heparin, but I'm not 100%. I had to take it during my last pregnancy - the clinic prescribed it until 12 weeks (I had a MC at 9 weeks).

Hi @PGJV I talked to Mr S about pains I'd been having previously and he put it down to the Progesterone - So if you're taking that, it might be some of the cause? Hope you get that positive ping X

Hi ladies, just wanted to say thanks so much to you all for your messages of strength and support last week during my big wobble. Sorry for the delay in replying, I haven't been online much. Still feeling very low and mixed up about everything, but I'm taking your suggestions on board and I also have a counselling session this week and will talk things through there. Am struggling to find the strength to keep going in this sorry situation, and I actually feel terrified of getting another bfp and what horrors and heartbreak that might bring. So I have a lot to sort out in my head. But it's good to know people in this group understand. Thanks again. Xx

On a more positive note, I had a good experience in Coventry. Everyone was lovely and I saw Prof. Brosens who was great and answered all my questions very patiently. I've to go down again next month to repeat the biopsy, and they'll put a treatment plan in place for me whatever the outcome. So I'm glad I went and hopefully they can help me. Xx

@MrsMargot no, I stopped at 12 weeks. I know some people keep on taking it all the way through. I can't imagine how; I'd feel very strange injecting my tummy right now.

@WeeGi take it one day at a time and keep focusing on you. We're always here for you and yes, we do understand and can support you x

@KittyKatSmile interesting! I know some people stop at 12 and some indeed continue. I am wondering what determines the difference. Is it the doctor or the issue. If you do not mind me asking, what was the reason prescribed you you? In my case it will be positive lupus anticoagulant.

Hi ladies, hope everyone is doing well. I'm about to ovulate and start DrS protocol and i've been wondering if I can exercise during tww and pg (if I get lucky). I do hit workouts a couple times of week, less than 25 mins but intense. I would like to continue my workouts especially if pred will cause me to gain but won't if its risky. Do any of you ladies workout during tww and early pg?

Ladies help, I’m at peak fertility and my OH is refusing BD for the second night ina row. He’s just turned away and gone to sleep. I’m so angry and have been lying here just sobbing which feels pathetic. , l know it’s stressful on him but I don’t know what to do, I spoke to him about it the other day, he asked me to give him warning so I told him last week when would be my fertile time and now he’s just ignoring it. I know there’s next month but I hate missing out on the possibility. Sorry I know no one has answers but I need to vent.

@Eeviee I know how you're feeling, I've had many months like that where my DH chose the worst time to not be interested in DTD. In fact it happened on our first month on the DrS protocol and I remember being so angry - to the point where I was considering not even TTC anymore.

This doesn't really help for right now, but the next day I sat down with my DH and explained everything: from how a baby is made in only a 24 hour window (my husband seems to think it's so easy and you have about 3 weeks for it to happen ) and how the medication works. I also explained my feelings and how I have to take all this medication and all he has to do is ... well you know what. He seems to be more understanding now that he's more aware of everything, and is trying his hardest.

Maybe try with explaining your feelings about everything as I'm sure your OH already knows the biology side of it (unlike mine). I'm sure he'll come around, I understand the pressure on them but there's more on us and I think they should be more aware of that.

@Eeviee my DH did that last night even after we spent the day texting and flirting with each other. Once he got home he was too tired. I was so upset I actually told him off and wrote off the cycle. I hardly slept because of it so this morning I woke up extra early to talk to him before he left for work and we ended up dtd. I find mornings are best with my dh during the fertile week because he’s almost always too tired after work. Is it possible to try in the morning, wake up a bit earlier than usual?

@Eeviee I'm so sorry to hear that. I hope you manage to get through to him. It can just be so tough on all of us.

@zoe16 it's a contentious one but one I feel very strongly about. I continued to exercise throughout, mainly for the reasons you've set out (pred and weight gain etc). I thought if I was going to be on it for a few months I should try to keep exercising. I did and in spite of that put on quite a bit of weight. After I got pregnant, my clinic told me to do nothing for 12 weeks. I pushed them on this as it directly contradicts NHS advice and asked them to give me concrete reasons why. All they could come up with was 'you've come so far' which I didn't really think was a reason. All I'd say was that I avoided jumping during the tww. Not sure if there's anything in that but that's what I'd heard.

@MrsMargot I'm embarrassed to say that I don't know why I was prescribed it. It was my first go at IVF and they just added that to my protocol. I didn't question it, just merrily went along with it. I assume it's down to my history of miscarriage but I don't know...

Ok so I am out this month too! BFN this morning at 10dpo. Not sure what’s going on! We’ve never had an issue conceiving before!

@Eeviee sorry you have to go through this. It would be best to sit and talk it out with him.. it’s really hard for everyone..

Hello ladies its me again. Any one TTC on Dr S's protocol as me and unsuccessful for two consecutive cycles? - Pred, progesterone, vitamin d + pregnacare with omega 2 softgel and aspirin (75 mg)

If yes I have a question - I've just emailed the midwife at their clinic regarding my situation and asking about next steps and I've been told to make and appointment to see Dr S again. If you've been in the same situation as me then I'd like to know what happens at this appointment? Will I be given more pred and asked to go back and try again? In that case its going to be such a waste of time as I wont be able to get an appointment immediately and I might miss out on the next cycle. @Chickjen were you with Dr S? I know you'd said that you were successful in your 3rd cycle while on pred. Such mixed emotions I am going through at the moment!

Thanks in advance to all of you!

@MairMum18 @zoe16 @KittyKatSmile @PGJV Thanks for your support, I feel really bad for writing a message about this but I was so angry. I know it's not his fault. We've had a chat this morning, he thought we had the whole week and also thinks I'm putting too much pressure on that it has to be this month, he thinks we should agree to give it say 3-5 months and see what happens which I know is a reasonable request, I just can't help but feel stressed and angry if we've missed out on a chance, I know I become a bit preoccupied and crazy around this time of the month and he senses it and I don't think it's very attractive. I probably wouldn't want to dtd with me...

@zoe16 I struggle with knowing what to do for exercise, my first 2 losses I miscarried right after swimming so thought that may be why, then last time my acupuncturist told me to do NO exercise at all apart from walking which was hard as I felt unattractive and fat. I try to still do exercise but less intense than other times. I don't know if HIIT is the best for preconception or pregnancy as it's quite full on, could you switch it out for something a little less intensive? Or maybe just adapt and do a lesser version? I also use the Nike Training app to do workouts at home but I know it's easier to do a class sometimes.

@MrsMargot I was told I'd have to take heparin right up until I gave birth but I have diagnosed APS. If your Lupus coagulant is positive I reckon you'd be on it the whole way through.

@PGJV sorry I don't have an answer but keen to hear what others say as I suspect I'll be in the same boat at the rate we're going. Last month and this one are write offs...

Also I've started spotting today, day 13 of cycle, I've never had that before? Anyone had similar? I suspect the meds last month may have messed things up a bit.