Immune/natural killer cell treatment when TTC or pregnant (aka the 14th pred thread)

[sunnyday01]

Continuing from 13th thread

Hey girls,

Sorry alot of you are having a rough time.

Dildoos i can t imagine the emotional roller coast it must be with everything u feel after a mc plus coming of pred and progesterone - u are a strong lady and completely understandable u need some breathing space.

Trying - sorry to hear about your lining. Were u on pred this month? Try not to think the worst like scarring etc, more likely hormones out of wack somewhere. I know how devastating test results can be. I remember getting my amh 4 years ago after 18mns ttc, it was 0.5 and i was utterly devastated and thought that was i had no hope of concieving naturally or maybe even with ivf. so next month went to ivf clinic for 1st consult, didn t know it but was actually preg with my ds at that appt. My repeat amh that month was 3.1 so my point is don t get too disheartened by just one test, these things can change so much even just month on month and worse case if u did need ivf you are young so will have great quality eggs and then immune treatment to back things up.

Sunny - hope the appt went well.

Determined - hugs to you. This journey is so hard that is so understandable to feel like giving up but you are Determined and u will get there, you all will.

Hi to Rosa, Hope and anyone i ve missed.

Afm cycle behaving so far thankfully, am 6 dpo, not taking pred (or aspirin, keep having panics about taking anything..), not sure when i will test as just hate early testing.

Hugs all round.

Bless your heart , more knock backs is not what you needed! Le,t us know how Friday goes, hopefully you'll be on IVF list and you know what they say about Sod's law and all! You'll fall with a good sticky bean! Xx

Hula fx for your BFP this month ! We need some good news! ( sorry not too much pressure there ) xx

Hey Dildoos, Trying, Determined, Hula, Hope, Sunny and everyone else.

It's so cold outside, maybe it's not helping - you know I don't know many people born in October

Trying - what a nightmare it is to juggle all the info, tests, work and trying itself.. I feel for you. I'm in same boat though as only one cycle behind since treatment and 3rd MMC and seem to be infertile as well as having a hostile uterus/ overactive immune system. I don't think will test as know my body so well... Trying to figure out all I need to do if I go for SO later this month... Work trips will need to cancel, things will need to get from Boots, nights we absolutely need to be together etc.. Will be interesting to see the scan though...
Dildoos.. It's important to feel mentally recharged (at least a bit, if not fully) so think you're being very sensible waiting a but to see how you feel when drug effects wear off. Plus I always think.. What IF we don't ever get lucky... I want some happy memories sprinkled in around this time... And the happy times should help everything else anyway.

Well girls.. I know ALOT of people born in Nov so maybe Feb conception is going to be lucky for us x

I am a November baby actually 18th which I share this date with the birth of Mickey Mouse sorry everyone needs a claim to fame! Xx

Oh trying, I am sending you such a big hug. I know you must be feeling really crap right now but hopefully knowing the problem will help you to be able to solve it. I don't know much about this issue but I have seen loads of things online about building womb lining so hopefully it isn't too difficult.
I have had so many low points and false starts over the years but yesterday had a scan (almost 16 weeks) and baby is doing really well. I know I mentioned a few weeks back about the possibility of abnormalities but it looks like everything is just fine! If it can happen for me (expecting second DS) after seven losses then I know it can happen for you guys too. Sending you all so much love, xxxx

Hi all - looks like a lot went on yesterday!

Dildoos/Determined - sorry you are both feeling low and not wanting to bother again, I can totally understand that but hopefully as the weeks pass you will get stronger and be able to go again x

Trying - sounds like you are going through the mill at the moment. Did you go for a scan privately or on NHS? I agree with Hula, you can't rely on one result so fingers crossed everything will be ok later on Friday. Do you know what your measurement was? I got mine done when i was on SO and it was about 8mm each time i think (day 10/11 of cycle), the sonographer always said its not thick enough but mr s/Louise never mentioned it when they saw the results. I would definitetely speak to Mr S or even Louise - they have worked with numerous people who have had miscarriages and may be able to offer some advice. I had a friend who suffered from thin lining (can't remember why) but she didn't need IVF she just had some medication to help thicken it.

Glad all is going well for you Hope

Hi to Hula/Rosa and everyone else!

I had my appointment yesterday, was really positive and got lots of information and asked lots of questions. I asked about my NK cell results at I have a very high total count, but also a high activity (1.08) and a high cytoxicity (38%) and apparently the activity and the cytoxicity results are the ones which need keeping an eye on! Anyway he suggested I go on to hydroxy, which I was happy to do - doesn't seem to be any side effects from other patients he has given it to - plus got to have blood tests every 3 months and an eye test (need to find out a bit more about that and how often i need it). Popped my first tablet today, as got to have it in your system for 6 weeks before trying, and we are keen to try again asap so assuming period is 3-4 weeks away and than ov is 2ish weeks away i'm hoping i will hit the 6 weeks.

I will also be going back on SO from next month (assuming i will have had the hydroxy in my system for 6 weeks)

Also found out that they are moving to a new office which will be the miscarriage clinic - still in epsom but will be their own building. Think it will be open in the summer, and all epsom appts and intralipids/scans etc will be done there.

Hey sunny. Ok, glad u feeling ready to go and u can go back on SO. Hopefully u know wot dose works and it will happen v soon for u!

Thanks so much for the advice too. I'm def gonna talk to mr s once I've had my repeat scan,HSG and 3D uss from mr lower. . I have my uss scan nhs and now having a private one on Friday. I'm not gonna lie, in terrified I have ashermans will need major surgery and will never get my uterus to a state where I can try again. I keep wondering wot my Periods used to be like but for the last 2 years I've been preg of miscarrying and before that had the mirena so they were light. So really my periods 4 years ago I have no memory over! I have a proper bleed but maybe it is lighter. Anyways, must try keep calm and see what my next tests show. Mr lower is uk asherman specialist so at least I've only got a week or so to see him.

Hope lovely news. So happy for u! Ur little one must be excited too!

Rosa-when r u testing? Are u gonna go for SO?

Hi Ladies

Trying I am so sorry you are having to go through this, at least you are getting answers. Are your periods painful at all? I am glad you have the right specialist on side if it is that. (Am so sorry its just another thing to deal with on this nightmare journey we seem to be on).

I have heard people being given a variety of different meds to help build lining and then its worked out fine so I am staying positive and keeping my fingers crossed for you

Sunny - sounds like a good appointment with Dr S. I am so pleased for you and now that you have a plan of action!

lovely to hear from you hope, glad things are progressing nicely!

How are you doing Dildoos?

Thanks for your support Hula, Rosa. Means a lot. I think I will be better when I feel better and my head stops hurting....good luck for the next couple of days! Rosa I know what you mean about happy memories...need to get some fun things in the diary...I feel like I am wishing my life away a bit at the moment and not really 'living'.

waves to all/anyone I have missed xxx

Sunny sounds like your appointment went well and great to have an action plan.

Hope lovely to hear all going well with the little one on board.

Trying - hope you re ok and good you ve not got long till another scan. Sounds like you ve found a top guy for it too.

Dildoos and determined hope you are ok and you Rosa, this is a hard journey.

I feel i need to live life a bit more and so we have just booked a weekend away just dh and i skiing, yay, slightly scared as 1st time been away from ds for more than one night or more than 20min drive but know he ll have a great time with the g.parents and it will be so nice to have some time with dh. Definetly will ease the blow when af shows up this month !

Hi girls

Thanks for ur kind and supportive words. Got my scan tmrw am. I literally have developed a scan phobia. I've had about 1000 and each time it's been miscarriage, retained products and now this. (Except Once where there was a perfect heartbeat at 6 weeks). Lying on a coach looking at the ceeling while someone faffs about down there FILLS ME WItH DREAD.

Will I need surgery, will hormonal support be enough, will I need ivf. Who knows right now! I'll only know about appt with lower (more thousands spent on this quest!). So for now I need to calm the hell
Down! I've booked in with counselling in 2 weeks for first time. I need my hope back-it's literally disappeared. Is bloody exp! But she's meant to be v good, my acu lady suggested her.

Determined-it's so pants to keep urself lifted. It's so so hard. My DH said today-look our baby will come one day for now lets try enjoy Eachother as we will never get these days back and we make Eachother happy and right now lets just prop ourselves up on Eachother and keep going. I suppose focussing on the good things u have in life can make things easier? Me and DH have decided a weekly date night! Dinner/cinema/drinks wotever just something midweek to get out of house and spend time
Together. I suppose it gives me something to look forward to? Right now I don't want to speak to anyone except him or My Parents anyways.
(And u girls)!

Sunny have u started the hydrox? It's well Tolerated usually so u will be fine!

Hula that sounds Lovely! And very much needed! Make sure u thoroughly relax and like I said, enjoy the good things we have in our life's.

Dildoos and rosa how u doing? Hope I hope moon face gone!

Anyways will post tmrw with rpt scan results no doubt in floods of tears acting desperate and with all rationale thrown out the window!

Hi all ,
Thank you all I am feeling 90% better after sleep sleep and more sleep!
Still unsure on my next step!
Sunny glad your appointment went well and so for next month I keep everything crossed!
Good luck for your scan tomorrow trying, here's hoping for the kindest answers and treatment plan for you as I think you've had your fair deal of misfortune when it comes to TTC! I am screaming 'ENOUGH ALREADY!' In hope someone is listening!
How you feeling determind?

How are you rosa? Hope?

Nothing to report here other than af due tomorrow and still ok red bleeding? Will it ever come ? X

Hula that's fantastic that you have a little break! I know you miss the little one but if it's anything like my nieces/nephews and friends little ones the grandparents get so excited and they all have a fab time doing fun things. It will be so nice to spend time with DH too doing fun things.

Trying I am keeping everything crossed for your scan tomorrow xxx and and I think counselling is a good thing too. Getting some of the emotions we have been holding and talking to someone outside of our family and friends I think will be really beneficial!

Your DH is right, is he going with you tomorrow? I am pleased you have some date nights and fun things to look forward to! Life is for living and ttc, fertility and rmc's have become all consuming for us all I think at times.

Best of luck for tomoro, thinking of you xxx

Hey Dildoos glad you have managed to get some decent sleep! And feeling better. Sleep is a miracle for me I wish I could buy it in bottles!!
I am ok thanks, been struggling with lots of headaches (still) and I am sure that's why I am feeling a bit down with it. I just feel drained and no energy. I am sure when I feel better I will be more up for more tests/trying ttc or whatever but for now I am just taking it one day at a time!

Xx

Sport missed your bit about af, have you had any cramping? X

Sorry not sport!!

Determined ur hormones are still all over place but u got the pred etc and ur going through so many diff emotions. It's natural to be feeling not urself. Ur fog may have lifted but u will feel the haze for a while. Hopefully in a bit u will feel better and ready for Ttc again! Hope u have something nice planned this weekend

Dildoos hope af comes and goes soon and ur cycle sets back to normal. Glad u been resting and looking after urself x

Thinking of you today trying xx

Determind you poor Thing with the headaches I has one off a couple of days but luckily gone. Have you spoken to Louise about them? Could she maybe suggest anything?
Hoping you feel back to normal self soon xx

Morning!

Yes started taking hydroxy yesterday, there seems to be few side effects on the leaflet so hopefully I'll be ok. I'll be needing one of those pill boxes soon where you can put your pills in for different days/times.

Thinking of you today trying, will keep my fingers crossed that it is not bad news.

This thread seriously needs some good news/good luck!

Haha I know! I've been so pissed off this week I've not taken a single tablet or vitamin.

Thanks for ur wishes girls will keep u posted. So glad I have my appt in London soon, at least I can plan wot I'm going to do then. I'm an obsessive planner , u would think I would have learnt by now that fertility can not be planned for!

It's Friday, happy weekend x

Yes fingers crossed trying! Thinking and praying for good news ;) xxx

Ha ha sunny I have one of those to speed things up in the morning. The amount I take for all my different things is crazy! Just don't put the cyclogest in there! Ha ha

its ridiculous, hydroxy has to be taken 30-60 mins before food in the morning, then i take my vit d, pregnacare with omega 3 (letrazole/steroids if needed) after breakfast, then asprin in the evening!

I found the cyclogest quite funny - it reminded me of a candle!

Lining 6.18. Not great but not as bad as 4 (he prob made an error as my womb is tilited slightly and today he said he had to twist the probe in a funnt angle to get the right reading) Prob reason why not getting preg. Should be more like 8. So now I don't know wot to do.
I've emailed Louise see wot she says. Hopefully with 6 it's not likely to have scarring though but won't know for sure till 16th when I have my other tests.

Not really sure what to think.

what cycle day are you on trying?

Its good news that it isn't as bad as you thought but maybe something that still needs looking at? Emailing Louise is a good idea - she doesn't work on fridays so i expect it will be monday nefore she gets back to you. Are you still going to mr lower?

Day 25. Yeah I'm still going to see him. I want my tubes checking anyways as not preg and also I stil need to be sure there's not scarring.
I should prob have a scan done preovulation (like u do have sunny) as that's when it's thickest. So I'll have another one done at 14/15. See mr lower and talk to mr s. then by end month hopefully have a plan.