Immune / natural killer cell treatment when ttc or pregnant (aka the 15th pred thread)

Ah' I've only ever been to new life hence my confusion.

I can't imagine picking myself up again to try again right now. I'm sure we will, just can't see it right now. I need to heal I guess and get more mental strength to face it now I've experienced my first mmc on treatment and what it means. Mr s wants us to back to discuss results from genetic test before we start again, that'll be more money. Isn't it time for the NHS to recognise NKC?!
Also wondering about SO, took us a surprising amount of time to conceive this time. Plus about hydroxy. But ultimately I need those results plus a cycle to reset me so Ive no need to wonder too much at the moment - easier said than done!!!

Oh really sunny? I didn't know that, only knew we were going somewhere different when we got the reminder text and noticed the clock house as a new name.
All the cost is a nightmare isn't it. We had saved the amount needed for treatment if we were successful in one go. Obviously we weren't so we are £700 or so down and will need to replace that before we start again. Money's tight here, hence the need to save up.

Hey, thought I'd check in and let you know how it all went.
So, Thursday I rocked up to my local hospital having arranged most thing in the motorway on Wednesday. The team at the hospital were brilliant, so caring. Didn't need to have a extra scan as a letter had been faxed by mr s team confirming my scan results of the previous day which was easier on me. Obviously I was counted as an emergency, not previously planned so they couldn't tell me when it would happen but they were hopeful for that day. But within minutes they told me it would happen at 1pm, something had been cancelled. This was at around 10:30 so not to long to wait. Thank goodness, don't think I'd been able to cope if I had to wait days.
All in all, although wasn't pleasant in any way, it was simple. A few hours wait, then the GA, awake with 20 minutes, rested for a few hours and home by 5. I was fairly controlled waiting but walking down to the theatre and then waiting whilst being prepped for the GA I was very upset, it was horrific. I know there was no way I could've had the procedure done under local. I went under sobbing and woke up the same way which was distressing.
I've suffered with bad cramps since, worse than I thought,and light bleeding. Seen a couple of very small clots but nothing to bad. Lay in bed most of the day Friday, Saturday u did too much and then had to rest, rattling with painkillers for the rest of the day!
I'm pleased that I had the procedure, for my mental health and I would do it again if I ever had too. Please to god I don't!
So now weaning off the pred, taking time to heal for a few months whilst waiting for genetic results. At the moment I can't imagine trying again. Have just thrown my pregnancy notes and paperwork and my tests in the bin.

The new clinic is actually just a few rooms in an existing place, much like before, but very nice. Mr s and Louise were kind but straight to the point. I found my scan uncomfortable and actual bled for a few hours after. Worse bit is to get news like that, then have to walk out into a room full of people then wait whilst we have to pay, all the time trying to choke back your emotions. Why can't payment be done before? You're reeling with bad news and emotions and then you're asked to pay for that?! It's an extra kick in the teeth. If paid before probably wouldn't have given it a thought, but I left thinking I've just paid £210 to be told that. And now I've got to cancel h@h.

Anyway, I'm home, it's almost over and I've my children to distract me. I know I'm lucky to have them, esp my little pred baby. I'm constantly eating and not taking care of myself, I need to get back to my diet but I need some time first.

Thank you for all your support xxx

Hope everyone had good weekends. I just thought I'd check in before another week likely keeps me away. Determined- I just read back our nutrition chat and can't believe I didn't wish you happy birthday.. It must have been a long week as I just didn't click! Hope you managed to do something nice and relax - with red wine and dark chocolate!
I don't know if native else had had cramps from pred? I woke at 4am with painful cramps and night sweats . Assume it's the pred but guess could be other things!
Hope you all have a good week - and Lillies, thinking of you - I wish could say something to help. I've had 2 MMCs so let me know if you want to ask anything. Hopefully lighter nights will help us all feel more positive which has to help xx

Agree Determined.. No matter this has to be a good thing. I was devouring Lindor and creme eggs in scary quantities just weeks ago do maybe it's not a bad thing I've not been lucky yet. I have a 45 recording of a hypnotherapy thing I went to after my first MMC but her voice kind of annoys me now which defeats the point! There's a free app called At Ease I quite like as three options and choice of music - and they only last between 9 and -11 mins. But always chill me out, sometimes help me sleep! Let me know if you've found any good ones. Happy weekend xxx

I'm with you! It's so hard and whatever we do has to be realistic or else you won't be happy and end up stressed triggering an immune response!! Arrghh!! Treats are good too, got to keep it real... dark choc with a high % cocoa is good and red wine has reservatrol (great antioxidant in it). Oh also reduce caffeine and try and eat as organic as poss without going broke is another thing I am trying to do!

For the mentalness/stress I have a hypnotherapy podcast I sometimes play and plan to use that more and am going to try some mindfulness/meditation! I am the worse person in the world for not having a calm brain but I am going to need it for now, for ever and if I ever get/stay pregnant! Whether we are successful with the baby thing or not...it can only help with my general health and wellbeing

Happy Friday xxx

Determined- I'm soo on your wavelength. Just back from accu and she told me no gluten, dairy or sugar as all exacerbate inflammation. Same as stress- but harder to manage with work and this challenge in our lives! I find gluten easier to eliminate as good alternatives and you can still have all veg and rice etc. dairy is harder - love yoghurt and cheese and no we need to watch our calcium intake with steroids. She said just take calcium tablets though. She also said eggs are fine as they are natural - it's fermented and processed foods we should avoid. I downloaded that book you mentioned - wahls protocol etc and was interesting and compelling but I think not realistic that I could be that rigid given my job and life. But reassuring to know the approach has worked.
I'm def going to allow dark chocolate and red wine treats though ... They will help with stress which also needs treated
Finally drinking enough water is a really obvious thing I personally don't do enough of to flush toxins out.. So taking a water bottle to work now. Hope my good intentions last!
Happy weekend everyone. One more until Easter when hopefully lots of us have a 4 day weekend x

Hey Ladies,

The topic of nutrition and auto immunity is very close to my heart. So much so I have decided to put off any further retests (one retest is enough for now) and try and give myself a helping hand via nutrition & supplements. I haven't been well lately and i don't think more steroids and a retest and then it not be great news is a good move for me at the moment. I'm not strong enough. (I have my best friend hen and wedding coming up and am not missing out (mentally missing out iykwim) on everything that comes with that due to lots of drugs and maybe another MC). A bold move one met with cynicism by many I am sure but I figured I wasn't born this way so surely I can reverse this (or at least tame it a bit).

I saw a nutritionist a few weeks ago and had blood test for my vits and mins and a hair test for metal toxicity. Got my results yesterday. Ironically I was low in zinc (immune system), iodine (thyroid issues), magnesium, Omega 3 (I have been taking omega 3 by the lorry load and have loads in my diet I can tell you) and was taking too much selenium (for my thyroid). I was also toxic in mercury! (am trying to see if there was a link between this and hashi but have since heard we are all toxic in mercury! blah!).

I have done a lot of reading around nutrition (and the nutritionist advised also) to cut out gluten and dairy. (Dairy I am struggling with tbh).

Anyway (sorry for long post) but I truly believe that some of these nasty immune issues we have can be reduced if cut out certain triggers (not just food but stress and things like that). So that's what I am going to do. I am going to detox and get my 'health back' hopefully over the next few months before we think about ttc again.

It's not what I wanted as I would rather get back on it but I don't feel my body could hold a pregnancy right now...(even though my eggs turn another year older today!!). I am going to detox and try and kick this autoimmunity in the butt or at least get myself in a position that I don't need super powerful drugs!!! (fingers crossed).

If I have to resort to the hard stuff and IVIG one day (I really really don't want to) then I may. But I am hoping I don't ever get that far!!!

Hope you all have a lovely weekend planned! I'm off for a gluten, diary, alcohol free dinner

xxxxxxxxx

I agree this thread needs some good news!

Cheers ladies. Very interesting about lifestyle changes.... Definitely going to give this a think!

So is gluten free the way to go? Is that basically bread/wheat? Does that mean no rice :(?

Any other changes?

Thanks Hope- will look into. How are you doing though?? So great things going well .. I guess you never fully relax after miscarriages but you're well into the safe zone and you must be dying to meet your new wee one now! I really hope you're right on it happening. This thread needs a boost of good news and ideally we will all have some before you have baby number 2 xx

Hi rosa, part of my treatment plan from Dr S involved cutting out gluten completely. I never had any problems that I knew about with gluten but this pregnancy is proving a breeze compared to the one I had with my son, and of course there is the fact I haven't miscarried. After seven miscarriages it must be one of the things that made a difference. So it might be worth trying to cut it out, although, as you say, we are all different.
Have you heard of an IVF place called CRM in London? Might be worth travelling down because they have great success rates. Hang in there, it will happen for you, xx

Hi drttc- it's been about 5months, maybe a little more. My last pregnancy ended in July last year (3rd miscarriage- was my second MMC) - and only found out about treatment after that. It's hard to know what the triggers are but I am looking more into nutrition as it can treat the cause not just the symptoms.

Also, I'm surprised the hydroxy hasn't helped calm your autoimmune disease symptoms! Thought that was the point :(

Thanks for that info, Rosa. How long would you say you've been on it? 4, 5, 6 months? Have you fallen pregnant on Dr S treatment before?

I'm afraid I'm not familiar with IVF... But it's something I would certainly consider if I needed too. It does seem they have a lot of success :)

I also just wanted to mention SO and IVF.. As well as hydroxy. I've been reflecting a lot lately and had a particularly hard week when my DH was away all weekend at a stag do and I realised how dependent I'd become on him and how time is running out for me.
I'm on the second cycle of SO and upped my dose, it may be upped again next month. I had a local scan and the doctor said I shouldn't waste time as would be 39 soon abc just go for IVF with embryogen.. It's apparently very successful for people who suffer recurrent miscarriage. So have asked my GP to refer me and waiting. He said I should stop immune therapy if I do to avoid infection but of course this is not what Mr S recommends.. Always nice dealing with mixed opinions!
Anyway it may take until June or July to sort and would need to give myself a month or do off the SO and other meds first if I do so will do at least another SO month I think.
I've been on hydroxy since late last year after I had an allergy to Humira. It seemed fine for a while but for the last month my skin had been a bit red, my scalp a bit itchy and I've started losing an alarming amount of hair which has also gotten really dry. I am seriously considering stopping as Louise said pred and intralipids should be sufficient. Such hard decisions.. If I knew I could have a healthy baby sticking on SO and hydroxy I would sacrifice all my hair for the pregnancy but this whole thing is a gamble as we all know .. I never believed it would be so hard and so long .. But I do think it's important to look after ourselves and look and feel as best we can throughout all this so leaning towards giving it up.
I know we are all different and have different blood results so not trying to worry anyone else. I've stated trying to cut out gluten and cut dairy down too as I get patches of what I think is psoriasis on my elbows and think nutrition plays a big role .. It suggests I do have other autoimmune conditions. Anyone else had success with nutrition? Does anyone else know about IVF in Scotland too?
Well I'm sorry for such a long post but had been a while. I hope you are all ok and to hear good news soon from more people x

Sorry everyone I've been MIA for a bit... But mostly so sorry Lillies to hear your news. I know all the stages of grief too well and just hope you're giving yourself the time you need and are being super kind to yourselves. We never know when it's meant to be but as lots of people say it's a numbers game for most, and most do get there somehow. Take care x

Thanks Sunny!

Well it's a bit late for me not to try in this cycle...! Here's hoping it either does it's work quickly or I don't need it!

I was surprised he prescribed it as well- though I had asked for a reason! I suffer from chronic unexplained hives (which he's found actual hive outbreaks can correlate with miscarriages episodes) but hadn't had them in a few months. Over the last few weeks they've returned, but instead of full on outbreaks, I just have a few at nearly all times. Very strange to have it all day everyday, and I was quite worried about what it meant for my autoimmune system activity... In addition to my poor cytoxicity results I think it makes sense to put me on something extra! May not end up doing much until next cycle though!

Hi ladies,

Dr S has just put me on hydroxy... Anyone familiar with this? Do you continue taking if pregnant?