Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

Hey Seeking .. Lovely to hear from you ... And thanks for the info.. That's good to know. I was on the complex last time so hope I wouldn't be expected to go to the max programme with even more pred as I was so affected by it.. Insomnia and weight gain. Hmm I just don't know it's the right thing for our wee family .. I guess time will tell. As I've said, I just know how incredibly lucky I already am... Xxx

Rosa!!! So glad to hear from you :) And happy to see mommyhood is going so well you're considering another. I think I was on the maximum complex NK cell programme so assume I could just go directly into that if I were to return... Would you ever try without meds first? After everything it seems crazy but I think I myself would be tempted to see if my immunes had changed for the better!

Hey Drttc.. Good to hear from you too :) Yes, it's a challenge as most people find, but as most of us who have been lucky enough to finally get there after years of heartache also find, you really appreciate every little moment all the more and take none of it for granted. My wee one is just perfect - but never sleeps!!
I don't think I could try with nothing unless I had a windfall and got bloods done again showing all was well now... I just find myself often wondering what if about my miscarried babies (had I had Mr S support from the start would I never have lost a baby?) .. And would never get over having another miscarriage and not doing all I could to prevent. Everyone is different though, but even though I've got the ultimate prize in a healthy, happy baby.. And somehow after all that I don't have postnatal depression, I do think I've a bit of post traumatic shock from all the accumulative grief I didn't really deal with as each time I dealt with it by focussing on the plan for the next attempt. As we all know, it's all consuming and so tough, especially when you have to wait weeks for things to play out with a slowing heartbeat etc and then have a D&C .. You never really get over these experiences. Sorry all sounding more than a bit depressing. I just think it's all left a permanent mark on me so it would be impossible for me to take a risk if I did get the guts to try again as I know no guarantees anyway.
Everyone that finds themselves on this thread is so brave - and great everyone is still so supportive .. It's one of the few reasons I would consider one more attempt.. Knowing there are others out there to support each other through the journey. Xxx

Rosa - lovely to hear from you! My little boy was 6 months yesterday! Motherhood goung well, has its hard times but feel it's getting a bit easier (if that's such a thing) now he is a little older and out the newbirn phase! I struggked a lot after he was born, dudnt have pnd but think it must have been all that emotion from what happened previously. The fog cleared at about 14-16 weeks and it's been much better since.

Like you we have been talking about another, I know we have what we wanted and would never take that for granted but as both me and DH are only children we have a very small family so would like to give our little one a sibling. Dr s told ne I'd need tests done but as I was on the full immune programme I'd probably ask if I could just go straight in that. Like you I don't think I could risk the possibility of another mc knowing there is treatment to help me.

Hi everyone else!! Drttc and seeking, you're so close now - the final straight! I'll keep checking back in to see you're news!

Hello ladies, it is nice to read you again after some time and thank you for all your previous support. It took me a while to acknowledge my 4th loss, I suppose having put all my hopes into the protocol I found it difficult to admit to what happened, I was in denial and very robotic about it until last few days when I broke down in tears finally. I really needed a good cry and now I feel at peace and ready to face the world.

billy I am sorry for your loss. Good you have the results- chromosomal is the outcome I am hoping for too when I get my results back, as it means it is not the treatment that has failed and there is a big chance it all works out next time. Huge fingers crossed for you. Are you starting soon or taking a break? Did dr s suggest either or is it up to you? I am seeing him in 3 weeks and have too many questions.

seeking tum drttc wow time flies and loving your updates, so happy and positive! How does the medication work in these later stages of pregnancy? Are you all off dr s protocol?

karryk congrats, such a good news and glad all went well at the scan.

Hi casiopeia Im glad to hear youre doing better.
Dr S advised us to wait a cycle but I think it was mainly because I was having a very long 10 day period, he said to give my body a rest - I'd had very little bleeding after my operation so I think it was from the mc. I usually ovulate late the next 2 cycles too.
We are trying again this cycle and doing super ovulation. Im a bit nervous for obvious reasons but also worried if I ovulate late again it might mess things up. But we are up against it and I want to make the most of the quiet period at work before the students come back in Sep and I get crazy busy again. I feel OK about things atm so a bit worried about going back in and rocking the boat again!

BTW ladies does anyone know anything about partial trisomy 6? Dr S just said it was a common chromosome issue and I hadnt read the report until yesterday and there was a recommendation that the parents are tested on the form - we have actually had the chromosomal analysis done and it was fine - but Im a little worried that it doesnt sound like a common trisomy.

ALSO - has anyone ever gone for a second opinion anywhere? If so did it help or just confuse things? Im think of The London Womens Clinic, has anyone seen them?

I hope everyone else is doing well. ITs lovely to hear form the ladies who've had their babies and so exciting for the ones who are nearly there! xxx

Hi Sunny Lovely to hear from you too! Can't believe your little boy is 6 months already! I don't think we would consider trying without meds either - just too much of a risk.

Caseopia- Generally you come off the steroids around 14 weeks, cyclogest at 16 weeks. I'm still on Fragmin but that's for a thrombophilia I've got alongside the nk cell issue. Most are off all drugs by 16 weeks.
DrS generally recommends a break of a cycle or two to let your body heal. I waited two cycles after my erpc last year.

Billy - mine was an incredibly rare chromosome issue with my last pregnancy, also the report said to recommend parental screening - which came back fine. I think sometimes it really is just bad luck . But I did then start on DHEA and Co Q10 to help improve egg quality.

Sad news from me, I'm afraid.

I had an overwhelming feeling of anxiety this morning and decided to go to the epu at university college. They did a scan and confirmed that little bean had no heartbeat anymore she thinks it happened at most a few days ago.

Booked in for an ERPC on Monday. Once again we hadn't told immediate family and are living eh in laws while our house is renovated, so I'm going to have to pretend that I'm just a bit under the weather.

Gutted. X

Oh no karryk I'm so sorry!! That is utterly shit! And awful for you that you're not in the comfort of your own home and can't express your grief fully. I'm so so sorry. Please be kind to yourself and remember the first 2 weeks are the worse with all the hormone changes and all that you have to go through medically. But it will get better. It's such a fucking roller-coaster!! Huge hugs to you xxx

Dear all,

I've been following this thread for a while and am really touched by everyone's warmth, openness and generosity. I am currently undergoing the treatment myself (steroids and intralipids) and will be writing about my experience as part of a broader newspaper article on the link between immunology and fertility/miscarriage. It's really important to me to show the bigger picture - the successes and the failures, the experts who think it's rubbish and those who have staked their careers on this treatment, and most importantly, the patients themselves. Would any of you be willing to talk about your experience? I would be happy to change your name and details to protect your anonymity.

If this is something you might be interested in, or even if you'd just like to hear more about the article and publication first (or would like to see some of my other features for reassurance), do drop me a line at [email protected]

So many articles only focus on the "miracle cures" and the patients who've triumphed. My aim is to write the kind of article I would have found helpful at the start of this journey: one that really gives a balanced and informative view and allows readers to make better decisions. I hope some of you will be part of that.

Thank you in advance,

Sophie

PS - karryk, I posted my message before reading yours. I'm so sorry, that must be a terrible and heartbreaking loss.

Thanks Billy and sophie

On the way home now. Feeling a tad crampy so not sure how things will go over the weekend. I've bought some strong painkillers in case.

I couldn't get through to the clinic - does anyone know how I taper the prednisolone? I assume I can't just stop them tomorrow as I've been taking them since mid June.

Got a banging headache. Don't know how I feel. I just want to go home to bed and cry. I hate crying in public....trying not to give in on the train home

X

karryk
I am so sorry!

I was on 25mgs of pred and as per Louise's instructions I tapered like this:

Prednisolone 20mgs for 4 days

15mgs for 4 days

10mgs for 4 days

5mgs for 4 days

Then stop.

Hope it helps.

karryk Ive always been told to reduce them by 5mg every 4 days - this is assuming you're taking 25mg/day? So you could probably only take 20mg tomorrow but maybe its best to wait until you've spoken to the clinic? Louise has left now I think? Do you know her replacement? Do you have to go back for another scan? My local clinic would always insists in waiting a week and having another scan - just to be sure!! Makes things more difficult really.
I was told to continue the cyclogest to try and hold onto the pregnancy for the ERPC so you could do that. I'm sorry to ask this but will you have the chromosome testing done? It might be a good idea to get a clearer picture of whats happening. xx

Karry I am so sorry. Life is so unfair at times. Just when you'd had a good scan This journey really is a roller coaster. Sending you lots of love. I know it's not nice to think about but try to get chromosome testing done, it will give you an idea of what to do next treatment wise.

Sophie - I'm always up for sharing information and getting rid of the taboo surrounding recurrent miscarriage so would be happy to talk to you. Can you pm me some details.

Karry- can't believe this has happened now :( I'm so so sorry you have to relive this nightmare. It's also so hard when you feel you need to hide what you're going through from the people around you... I did the same and have a lot of resentment towards these people. That said, it was still the right decision when considering their personalities- so I trust you have your reasons. I agree with others about trying to arrange chromosome testing. It's a pain but it helps with closure and the next steps. You can do this hun... Big big hug.

seeking by the time I get the chromosome results and see dr s it will have been 2 cycles, good to know we can start trying straight after (hopefully)

billy fingers crossed it works for you and your ovulation is on time, it is good that you have some quieter, less stressful time now before September.

Karryk, I am so so sorry to hear about your loss. its so unfair. You must be feeling so gutted. Thinking of you xx

karryk I am so sorry to hear your bad news, I am thinking of you and hope you are being looked after.

I am new to this thread, and was hoping for some advice please.

I have had 3 mc's over the last year. I went to Coventry and the biopsy showed high uNK's. Prof Brosens advised a treatment plan of progesterone and prednisolone. I have just been to my GP to request the prescription for prednisolone and, although she was very supportive and wanted to help, she was reluctant to prescribe the prednisolone. She is going to have an MDT with the other doctors to discuss, and will be contacting the clinic at Coventry to ask for more information and suggest that they prescribe the initial course of steroids.

I have emailed Kerri at Coventry to warn them and to ask if there is any way that they can prescribe the steroids without me having to go back to Coventry as it's a long journey for us (2.5-3 hours each way).

I wonder if anyone has had similar problems and how they got round this? And does anyone know WHY Coventry cant send a prescription or prescribe from a distance?

We are not TTC just yet, waiting for next month, but I am anxious with all the waiting and testing (have been to two other clinics as well) and just feeling very weary with it all before we have even begun. I'm frustrated with the delay, although the GP was very kind and interested/excited about this treatment plan which is something. She is just being cautious I think as it is not NICE approved.

Would be good to hear how others have got round this problem while I wait for Coventry to get back to me.

Thanks x

Evening lovely ladies,

I had the erpc this morning. Came home to my parents house where i always find it easier to relax. They have no idea about what's happened but that's fine, I'm being left to my own devices and don't feel I have to be as active as I would had i gone back to my in-laws place.

I'm letting the emotions come and go as they need to. Yesterday I tackled the entire garden hedge by myself slightly like a woman possessed! Now I'm going to lay low and see where my feelings take me tonight.

The procedure itself seemed to go okay. The doctor i saw in the morning seemed to suggest that they would send off for testing so fingers crossed. The doctor i saw last week wasn't so confident. Here's hoping.

Lucinda - I'm not under the care of Coventry so this probably isn't very helpful, but Mr Shehata's clinic send out prescriptions in the post or can arrange for them to go to a chemist of your choice. I would think Coventry might offer this? My own gp whilst not outwardly saying that she thinks I'm barking up the wrong tree, refuses to prescribe anything at all regardless of any letters she is sent.

Wishing everyone a lovely rest of the week. Thank you again for your kind words of support - they've meant so much xx

karryk thank you for the advice when u are going thru such a rotten time. So sorry for what's happened and I send a hug. Lots of love xx

karryk - I am so sorry about your loss and your pain, life is not fair! I hope you are being looked after. Take care of yourself xx

Sophie 2016 - It is great you are taking the time to write about this and try to remove the taboo, esp when people avoid speaking to you about the miscarriage. I am interested to read more about your publications.

Karry- you sound like you've made a good choice in staying somewhere you can take time for yourself. Wish I could give you a hug. Please continue to express yourself as we all understand and it's healing to have an outlet xx

thank you, drttc x

feeling grumpy this evening..had the whole range of emotions today, from googling adoption, reading blogs at 5am that made me cry, debating whether the steroid treatment is worth it, through to ayurvedic therapies for recurrent loss and feeling like overhauling my lifestyle even more than I've done already

heading to work tomorrow which I know will help distract me a bit, plus I get to see hubby again and that will cheer me up no end..it was nice to relax here yesterday evening but being at home all day has sort of helped me wind myself up a bit.

sigh... xx

Oh Karryk I'm so gutted for you. How upsetting and disappointing. The Internet was both my friend and my enemy when I had my miscarriages so maybe the distraction of work will help you. Take it easy and be kind to yourself. Xxx