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 thanks for your message. I do yoga but am going to try to do it more, and get out in nature for walks and exercise. Like you say, it helps to a point, but i can be feeling okay then suddenly it's all consuming again. For me I'm actually getting to the stage where I feel like the right thing for my mental health might be to give up. Both my husband and I feel like we're desperate for our second child, but also terrified of getting a positive test as the last five have been horrible, upsetting stressful experiences. And we really want our life back. But I feel so sad when I think of giving up. If I was younger I'd definitely pause it all for a while but the clock is ticking.

I used to be really fun and sociable, now I hardly do anything or see anyone. I cant remember the last time I felt carefree and unburdened.

It's such an isolating thing isn't it. I really hope your couples therapy makes a difference, even if just for your husband. And maybe you'll find something that helps. I'm going to try mindfulness to try to tackle my anxiety. Sending you big hugs. Xx

I had my first lot of intralipids at the weekend, and have another one booked in for a week on Monday. The whole IVF process just seems to take forever to even get to the transfer stage, let alone find out whether it's worked. I started on the pred this morning too, so waiting for the side effects to start!

DH has managed to retain some of his usual optimism, but not all of it: he's certain that the transfer will work, but says he won't let himself be happy about it unless it sticks around for 12 weeks. I've never known him be so pessimistic about anything, which is worrying. His optimism usually balances my pessimism out well.

Family holiday with the in laws at the end of this week: if MIL starts complaining about not having GC again will anyone provide an alibi?

@ginandtonicformeplease sounds like things are moving in the right direction. Try to relax and take it day by day (easier said than done!) As for the MIL, can you ignore her? With mine I pretend not to hear her and change the subject or walk away. I am so grateful mine is extremely busy with home improvements to even think about GC right now but the holidays are coming and I just know she will make a comment!

Is it crazy that I was impatiently waiting for AF to start and now that it is over and ovulation is quickly approaching i'm starting to feel like I should sit this cycle out? I know I want to start trying again, but the thought of getting a bfp at the end of the tww, is making me very anxious. Are these feelings normal or is it my gut telling me i'm not ready? If we skip this month should I still start the pred to get it in my system?

@ginandtonicformeplease that’s good advice from @zoe16 about ignoring her but I understand how hurtful it is.

I’m feeling really depressed this past couple of days. It might be the shorter days. I’ve just had a most depressing day with my mum. My mum is willing the menopause on me and told me not to get pg again. She knows about my mmc/D&C and hasn’t asked me how I am except to tell me I’m the age for menopause and don’t get pg. Yet she is thrilled telling me all about my cousin whose expecting again and this girl has not a kind word to say about me behind my back. I just feel everything is very unfair. It just hurts that my mum favours my cousin over me and I am probably going to have a good cry over it all. I’m sure it’s my depressed brain making me see things wrongly. I hate depression. I’ve had it my whole life.

@zoe16 it’s probably the fear that’s making you think about sitting it out. Definitely take the pred to give yourself more of a head start on next month even if you don’t ttc this month. I reduced to 10mg pred this month. I’m 5dpo and no symptoms, unless depression is a symptom?!

@WeeGi definitely do not give up. I wish you all the best at the Coventry clinic. You will at least get some answers either way and this will help you work out a treatment plan. Hugs to you ((())))

@wewin yea I think its the fear of a bfp ending in another mc. I would much rather a bfn tbh. I'll think about it and see what DH wants to do.
5dpo is still very early! Fingers and toes crossed for you over the next few days. I'm sorry to hear that your mum isn't being supportive, I find people (including our loved ones) don't really understand what we're going through unless they have been through it themselves. Perhaps you should spare yourself the heartache and refrain from discussing it with her, but I'm sure she loves you very much. Just have a good cry and let it all out then have a piece of chocolate. Sending big hugs to you xx

@Wewin Im sure your Mum is lovely but that seems like a really unfair thing to say to you. I really feel for you. Age and getting older is what worries me the most, but I have to keep hope. I was recently in touch with a lady on a FB group who had her rainbow at 45 after seeing dr S and is having her 2nd now at 46. I know it’s harder as we get older but these stories and hope keeps me going.
@WeeGi @Lulu19881 @MrsMargot Im the same, i try to keep sane exercising and doing headspace etc.. but I get bad anxiety and struggle most days, I feel like a shell of myself and have found I cut myself off from friends because I feel like no one understands. I miss the old me.... it makes me so sad to know there are so many of us having to go through this painful journey. Hugs to all of you xx

@Wewin I was wondering how come you reduced your dose this month? Was it because you weren’t conceiving on the 25mg? X

@zoe16 yes that’s a good idea just talk to your DH and see what he thinks. I was thinking of not DTD last month but when I talked to DH he said he’d prefer we just went for it just in case so I ended up changing my mind.

Thanks for your support re: my mum. I don’t talk to her about it, she only knows we are ttc as I rang her from the hospital scared when got admitted overnight for an emergency D&C. I wish I hadn’t have rang her now. She keeps getting her digs in and I don’t comment, just take it and say nothing. It hurts so bad. I know she loves me but I feel like I do everything wrong in her eyes. We are so different and I feel like a failure in her eyes, that whatever I do, it’s never the right thing. She’s not an encouraging person to me yet she praises everyone else and it hurts. Then she talks about me to all my extended family and her friends and puts me down. Normally, I just brush this all off but today it’s really got to me. Obviously she knows about my mmc/D&C a few months ago but she’s not asked me if I’m ok and then happily chirping on about my cousins’ new baby and how everyone is so happy. Her lack of sensitivity got to me today. I’m just fed up.

I never hear the words “well done you’re doing a good job” from my mum. Never. Yet she is always praising other people. I just don’t understand and it greatly upsets me

Life really gets to me sometimes. I try to imagine being brought up by a parent who actually told me that they loved me growing up and hugged me. That’s why I wanted a big family of my own to love and cherish. I love my kids so much and hug and kiss them each day, tell them I love them. Tell them they are amazing miracles. Then I see parents who constantly scream at their kids and don’t give them the time of day and it breaks my heart. It’s not fair and I don’t understand it.

What’s worse now is everyone in my extended family knows I had a mmc and am ttc and I feel they are all laughing at me bc of my age. My mum can’t keep anything to herself. So now I’m embarrassed and feel so vulnerable about it all too.

I wish I had a different family. I am a total outsider and so so different from them all. My dad has been the only supportive one and has given me his blessing. Praise God for my dad. Him and my mum are divorced and I feel after all these years I can be myself with him and talk to him openly.

@Wewin I am so very sorry to hear.... I would just confront it head on ( as in ask why she is so insensitive and what the issue is) but it is my personality. However I would also have a good cry afterwards. Maybe she has no idea what to say? I do not know...

@WeeGi I completely agree with @wewin. Do not give up. It will come. Sometimes I am thinking that I too have completely lost myself but other times I am thinking that I have become more resilient. I do know what you are saying about being carefree in a previous life..

@zoe16 it is definitely anxiety and it will pass. I would also top up on pred even if I would not TTC.

Now I have a question for all of you and your input would be greatly appreciated. Yesterday I had my first appointment with Dr S. I was in and out in 30 minutes. He requested a lot of blood tests (17 vials worth 😬😳) and I will see him again Nov 11th for the results.

Now, Nov 11th will be 2 days after my suspected ovulation date ( I am VERY stable). I asked him if it would be OK to ttc this month and he said that it depends. According to him, most of his treatments can start from Ovulation and they can start straight away. There is an option to have something (he did not say what) that may require to do a treatment for 4-6 weeks and then try to conceive.

My question is, is it worth trying this month? I do have leftover pred so I can take some from ovulation in anticipation of his full report the 11th. I want to feel like I am doing something but at the same time I am thinking what if I have this one thing that requires more treatment. Obviously, I will most probably NOT fell pregnant immediately but I cannot stop thinking the what ifs. I do not what to do. I am going crazy with worry.

Not to mention it is my birthday in December and I am crying my eyes out for the last two years... you know the usual (older childless etc ☹️). I am not even drinking to drink my sorrow 😁😃

Oh @Eeviee big hugs to you too. I really know how you feel. 😕

By the way, if anyone is London based and want to get a coffee and a chat I am always here.

Hello, just checking in. I was a regular on these threads before I had my son in 2018 and think I possibly updated earlier on this one!

I had 3 mcs, all before 6 weeks, before seeing Mr S. Then I conceived my son on my second cycle on pred after diagnosis of aggressive NK cells. He’s 18 months now and gorgeous.

Anyway I conceived accidentally in August so wasn’t taking the meds from ovulation and the pregnancy ended in a mmc. Cautionary tale for anyone not sure whether to take Mr S’s advice! I feel like that baby wasn’t meant to be but did ttc this month (first cycle after the mc) and waiting to test. Had tried not to stress about it and we didn’t really try properly (only had sex twice) but obviously now massively invested and already feeling really down at the thought of possibly going through it all again. Did take the meds from ovulation this time and already have the raging pred hunger!

This whole process is a rollercoaster.

@WeeGi I have just been catching up so you might have asked this ages ago but wanted to reach out to you. My IVF clinic makes you see a counsellor before you start treatment. I was very sceptical but one of the things she said was that you mustn't let 'Project Baby' take over 'Project You'. Do something that you enjoy or take up something new: learn a language or go on a cookery course. It's a bit fluffy but i actually found it very good advice. Acupuncture also worked really well for me, largely because I enjoyed having a sleep in the middle of the day. Another I did which was helpful for me was to plan to do things that maybe I wouldn't be able to do if I were pregnant almost trying to jinx the universe. So I booked a ski trip last March and decided if I couldn't go then I'd be happy to give up the money because it meant I was pregnant (as it turned out I was pregnant and found out I'd lost the baby the day after I got back. Today was that baby's due date actually. But I'm so glad I went on the trip.) Maybe book the time off work now for your birthday trip and then book something a few months in advance so you'll know how pregnant you'll be and what you might feel like doing. I'm going to New Zealand on Monday. Could be the worst idea ever but I really want to do it.

@ginandtonicformeplease I'll be your alibi. Always.

@Wewin I'm so sorry to hear you're going through this. As if all of this isn't hard enough without that sort of pressure and upset. Maybe distance yourself from your mum a bit and focus on your relationship with your dad. Take care of yourself lovely.

Thank you @KittyKatSmile that’s good advice and was thinking the same - I am definitely going to distance myself for a bit and see my Dad a bit more. @MrsMargot thank you for your support too, I’ve had a really good cry and meltdown this evening so I feel better. I cannot talk to my mum unfortunately as she gets too upset, shuts me down, walks off and then twists things to others. It’s a very frustrating and sad :( so I just keep my distance when it’s too much to handle.

I am feeling much better now after my cry and I must have seemed like a nutter bc I was shouting at her etc made me feel better. Never mind, the window was open and if neighbours walked by they would have thought I was having a barny with someone

@MrsMargot I would totally go for it this month and take your left over pred. If you do get a BFP you may be offered the intralipids. If I lived in London I would have loved to meet for a coffee (organic decaf of course right?!

@HarrietM87 thank you for checking in. Sorry about your recent mmc. It’s good to hear from others who’ve got pg very quickly on the pred. That’s very encouraging for you. There’s no reason not to think that it may happen again quickly for you. Also, the stats for you show when no pred then mc. With pred = successful pregnancy. I know it’s stressful though as I’m sure the mmc reopened a lot of old wounds and memories. Take comfort in the fact that the pred has worked for you before and no reason it wouldn’t again. So hopefully this new ttc journey from now will not be a traumatic experience again.

@WeeGi good advice been given to you. I recently started volunteering and that has been a welcome distraction. I’m helping women in a shelter going through traumatic situations and pg or with a young child. So you can find something you’re really passionate about and it won’t seem like work.

@Wewin happy to hear you’re feeling better. I think @KittyKatSmile is right, keep your distance from her and focus on your dad. You don’t need all that negativity around you right now, you have enough to deal with. And screw everyone else who think you stop trying, it’s not their decision!

@MrsMargot since DrS didn’t discourage you from trying I would say go for it and use your leftover pred.

@HarrietM87 very sorry about your mmc, but as you have proven yourself the pred may work next time. Thanks for the positive story about your son, I needed to hear that.

Thank you @Wewin and @zoe16 ! To be fair he did not encourage it either... he said something along the lines of ‘a lot of women had an unexpected pregnancy while we began treatment and they miscarried again (charming ☹️)’ he then continue to say about the treatments that start from ovulation apart from one ( no idea which one) and that because I will see him on OV date then I may be fine. I would not say it is encouraging or discouraging. 🧐 confusing hence my question...

@Wewin of course organic decaf with coconut milk ! Or decaf tea! 😃 I am not much fun going out in the food/drink department. I do not do dairy, gluten, sugar, caffeine, alcohol, nightshades, nuts and the list goes on! 😂😂

@MrsMargot, yes I was one of those who turned up to my first appointment pregnant, later miscarried and when I went back for my test results he said 'yeah, I'm not surprised you miscarried'. A charmer indeed.

The 4-6 week treatment is the hydrocloquirine one I think (I've largely made its name up but someone should be able to correct me). I was going to start on that one but broke up with both my partner and Mr S and went to an IVF clinic and a sperm donor instead :-)

Thanks @zoe16 you’re right. I don’t need the negativity around me. If I do manage to get pg and it sticks, I’m going to not tell her for ages as I don’t feel she’d approve or give me the support I’d need. So hopefully she’ll change her mind if she she’s a bump!

@MrsMargot Mr S doesn’t know you’ve left over pred. So that’s probably why he’s being negative. He probably thinks you’re just going to get pg then think about pred, not knowing that you’re actually going to be taking it from ovulation.

You do indeed sound great fun to go out with you sound super healthy. I wish I had your resolve. Good on you! I am still drinking two weak cups of Nescafé a day, probably just about 120mg caffeine and still eating gluten just occasionally (but as I’m intolerant try not to). I’ve massively cut down chocolate as sadly am very intolerant especially in larger quantities (triggers my autonomic nervous system to dysfunction more). So you see we’d make a great fun pair to get invited anywhere

Gosh @KittyKatSmile I am so sorry you had to go through this. He is indeed a charmer ... ☹️🧐 I shall have a look into the Hydrocloquirine treatment. Is this the one that you have to take the pills?

Morning & welcome to all the new ladies who’ve joined! ☺️ So much to catch up on after my holidays to America - it was so nice being away for 2.5 weeks and just relaxing, although I did miss my puppy SOO much 😩💙

I’m currently on the train to London for my follow up appointment with Dr S as it’s been 3 months since I started the hydroxy. Not really expecting much from the appointment as my side effects have been minimal & I just need a refill of my all my tablets (...ready for the bank card to take a hit 🙈💰!) Slightly disappointed on holiday as AF arrived so no BFP but it wouldn’t have been ideal as I wouldn’t have been able to get intralipids & my Pred would have actually ran out before we were even home from hols!!

Ovusense is showing ovulation today or tomorrow so hoping this may be our month 🤞🏽 strangely the last time I fell pregnant I’d ovulated on the day I had an appointment with Dr S! Maybe he’s some sort of lucky charm phahaha 🤣🤣

@MrsMargot as the other ladies have said, I’d personally just go for it! The medication Dr S is referring to is the hydroxy that you have to take for 6-8 weeks before trying again (2 tablets on a lunchtime) but I believe Dr S only adds this in if you’ve had a miscarriage on his Pred treatment plan (or that was my experience of it anyway ☺️) so chances are it’s scare tactics and he won’t be prescribing it for you as standard - although happy for any other ladies to advise they did get it from the beginning?

@chlo04 if you were using a FRER then I would expect you’d see a faint line even if your HCG levels were very low. After my last miscarriage I was still getting a line on the test when my bloods levels were only 8 so they really are super sensitive at picking any trace up. It’s likely that the medication has altered your cycle 😔

@HoldingOn2Hope I specifically asked Dr S about travel to Zika countries at my last appointment. He advised we check the countries on the official gov.uk website to see whether they were high/low risk etc. He advised us against going to a high risk country as either we’d have to wait out the ‘no try’ exclusion period afterwards or have the test to check whether we’d caught it. He told us America was fine though hence why we booked a last minute trip for earlier this month. ☺️ I know what you mean when you say you feel like your life is on hold. We are looking for holiday destinations for my husbands 30th birthday at the end of next year and there is so many ifs and buts to consider. We’ve just decided to book on the basis that we will still be in the same situation & if we happen to be expecting/with a newborn by then then we will re-arrange/ postpone!

Baby dust to you all 💫 & I’ll try to keep up with posts from now on 😂 xxxx

@Wishing5tar thank you very much! It does make sense. To be honest, I would be quite willing to do this. I was on pred in my last pregnancy but only a 10mg dose from BFP. Dr S almost laughed at me (😳) and asked me who prescribed me such low dosage. ( Charmer). It does seem that hydroxy works in cases so I was thinking to request it anyway. I am wondering if it has any contra indications.

And @Wishing5tar I do hope this is your month with all my heart!! ❤️😍😘

@wewin i'm so so sorry that you have to go through this with your mum, that must make things really hard. But I agree as others have said, maybe distance yourself and spend more time with those who you feel supported by, in the short term at least. You need to look out for you first and foremost.

@WeeGi its so hard, I am aware that I need more distraction. I have found journaling helpful, it's just important to remember to write stuff when you are feeling positive and good as then you can go back to it on the bad days and remember that some days are ok and will be again. Where are you based in scotland? Maybe we could meet up sometime if not too far?

@KittyKatSmile so sorry to hear about your break ups but good on you for going ahead, I would do the same. I'm glad to hear that you got a skiing holiday! I passed on 3 skiing holidays last year as I was either pregnant or had just miscarried.

@MrsMargot thank you, I wish I could meet up but I'm far away in Scotland...I sounds about as exciting as you in terms of what I don't eat, but then its also about balance so occasionally i just have a cup of coffee or wine (usually if AF arrives)! I would also just go for it if you have the pred, it sounds as if he's referring to the hydroxy which you'd have to start 6-8 weeks before trying.

@HarrietM87 so heartened to hear your story of conceiving your little boy, and sorry to hear of your latest mc. I hope that you are doing ok.

@Wishing5star welcome back! I hope you had a good trip and enjoy being reunited with your pup!

hello ladies.. I had a question regarding coffee - have you all completely given up coffee or switched to organic decaf only? is fairtrade organic coffee ok to drink?

Just so that you know I am on my cycle two of ttc while on pred and 4 dpo today and am still drinking one cup of coffee a day.

@ginandtonicformeplease I don’t know if the attached photo helps or not regarding your flu jab question ☺️ Just noticed it in the Epsom clinic xx