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

Rosa you know you can say anything here. We re going to get each other thru this journey whatever it takes !

Hope you sleep better tonight.

Afm- Today was the anniversary of my loss. Went to the seaside with my mum and ds. He loved it so much and the weather was beautiful, it really helped not to be sad (tho feeling a little teary now). Hope this year holds positive news for all of us.

Thanks Tryjng & Hula... It feels like I should be 2 months at least now in terms of much I've thought about it... Not yet 5 weeks! Aiming for a scan week after next, or one after that locally (waiting for consultant to confirm when they would expect a heart beat). Then 11th or 18th in London at 8 weeks/9 weeks .. Around the 2nd intrallipid time. I just so hope .. Well you all know. Woke at 2 am and couldn't sleep until 630! Starting to get lovely spots too. Not sure can use usual spot creams but hoping a wee bit be ok. As for sleep .. Hope that gets better!
I hope you don't mind me worrying about this openly. I know it's a good worry to have ... I so wish we could all have our happy endings ASAP this year x

Great news Rosa. Keep up the PMA and here s to a really good scan. Have u got one booked in ?

Rosa that's wonderul news. Really happy for u....and ur on all the treatment and u had the intralipids so this really could be ur happy ending. I know it's so hard to think like that but be positive and happy for ur growing bean it will in itself help!

Sasha sorry ur on here. So much sadness ;(. Mr s won't be able to tell u if nk are def the cause from history as u can see me all have diff stories. I had a 6 week loss, a 9 week loss after a perfect heartbeat, then a 5.5 week loss but it was looking bad from About 4.5 weeks. I've got slightly raised nk activity but normal levels. All else negatuve. I'm on steriods and intralipids when I get a bfp but found out dh has poor soerm so headed for isci/ivf now.
Ur local miscarriagr clinic will do a lot of bloods so u don't have to pay mr s for those (unless obv bupa cover it!).

Hi Everyone

Finally got my hcg for last Thurs which was 179 (was 51 two days before) so guess I can take comfort things at least started off well. I've been recommended to step away from the hcg and preg tests now and focus on scan milestones .. Will see..!!

Sasha- I had Bupa cover the initial tests but that's all. Your policy may be different but they said they would do on basis my miscarriages may be due to an underlying condition affecting me they might need to treat - but any treatment to support conception or the maintenance of a pregnancy was beyond the scope. You should also get them to put in writing all the tests they do cover - I was told verbally some were covered and then they challenged the bill and in the end there was some negotiation. Still- any help is better than none when talking in these figures!
Hang in there.. I had 3 in 11 months so I know how hard that is.. You need to have a purpose to stay positive (basically a treatment plan with a doctor you believe in), and do not underestimate the value of a month or so out to recover and focus on you and your family .. I think I'd have suffered less if I hadn't put so much pressure on myself.. Easier said than done though, especially when you don't feel time is on your side. I don't think you need to be worrying too much yet though - lots of successes in early 40s too. X

Hi Sasha,

Sounds NK related to me... I've suffered from terrible unexplained hives for years! Dr S has also told me he thinks they can be related to MC. Started hydroxy a few weeks ago in the hope that it'll calm them down (takes about 6 weeks for them to begin taking effect). I've had 3 MC, all before 6 weeks.

Rosa thats crazy still no hcg, poor you, the whole point is to reassure you its all going ok but at least you got the intralipids they will be a good boost to the treatment.

Welcome Sasha - so sorry for your losses. From the reading i ve done I think it sounds very like you may have immune issues and i d definetly look at getting tested.

Prof quenby is at coventry, she does a uterine biopsy for nk cells then mainly uses steriods and aspirin/clexane from bfp. Alot of us on here are seeing Dr Shehata in London or surrey (the miscarriage clinic). He does blood tests to diagnose issues and then uses a range of different treatment programmes depending on your results. He tends to use steriods from ovulation. Expect to spend around 2k for first cons and bloods with him.

A really useful book is the Dr Alan Beer book - is your body baby friendly. He s really the founder of repro immunology and one the the first to start treating women for this. He quotes success rates of 75-85% on treatment and there are lots of success stories going back on here so there s definetly hope for a sucessful outcome for you if immune issues are diagnosed.

Well I'm still waiting in hcg results to see if things started well for me .. Gp says can take up to 5 working days so guess could be waiting until Thurs for last Thurs test! Anyway had intrallupid and vein was found 1st time - so lots better than 4th as it was when had last year.

Welcome Sasha- I'm not a medical expert but sounds like you might have immune issues as you say. Best thing to do is call the Miscarriage Clinic to discuss what tests you need - they don't repeat anything you might have had in nhs or elsewhere. I'm a year older and sadly no children yet, but had similar number of losses etc- 2/3 were MMC and saw heartbeats so it's rare to lose after that which made me think my body must be attacking them .. I actually had that thought before I knew about NK cells etc.
anyway if you look back over the years there's a lot of success stories. Hope is now several months and we're hoping more will join soon- most of us have had trouble conceiving which I think can be hard when NK cells get into uterus etc after RMC as well as stress that builds up.. So we talk a lot about things to stay positive, calm and help our systems more holistically - like nutrition and accupuncture. We all hang to belief that you get there somehow if you persevere and relax (hard to do both) but as you know it's a lottery and very personal in terms of the impact of trying, never mind treatment. The girls on here are all amazing and super supportive as well as inspiring so you're in the right place. I'm tentatively hopeful .. If I make it to Fri I will be just 5 weeks.. Very early and doing my best to focus on small milestones.
Best of luck with your next step and shout if any specific Qs. X

Ahh you ladies are amazing...I do feel better today Prob just hormones! Started acu but she is slightly different techniques to the other lady so wonder if it's that?! The only other thing is I don't have reflexology as much so maybe that. I'm taking all the right supplements and managed to get it to 10 and even had a 12 last sept so god knows!!

I still have an Ovitrelle shot in the fridge from xmas but was really hoping I didn't have to use it as I had that 5 weeker/Chem so it's scares me but then my high cytokines that won't reduce scare me too. DH and I have talked about IVIG and I don't think its an option for us just purely for what it is and the risks! Oh well! Anyway...

I'm sorry you didn't get your bloods Rosa, I hope you can get them first thing. To lift the weight off a bit.

Sunny sorry about dhs sperm but I was also told about the comet test from my reflex lady and there are lots of things that can help improve his stats!

Trying do you ever wonder that the tests are just a snapshot in time at the very moment and could be better/worse at any other time? Bodies change and adapt constantly and deal with things like colds and tiredness and hormones on different days...I think I'm going too deep with it all!! Am glad DH is took comments ok! Nothing like delivering news nicely eh!

Hula glad you braved the humira - no regrets!! I hope you and dh crack this right away so the pressure is released.
Sending lots of positivity and trying to send some to myself! Ha!
Xxxxx

Hi Trying - good to hear you re doing ok. Not long now before you can get started, you re doing the right thing so all you can do is stay positive and it s got to happen sometime, it just has to !

Rosa what a pain you didn t get your results today. But stay positive, you re not bleeding and today you are pregnant so hang in there and i so so hope you get some encouraging news tomorrow.

Determined i can understand your frustration with the short LP, it sounds like it maybe worth looking into progesterone to see if you can lengthen it with that. I m guessing you ve got it covered b vits wise.

Sunny hugs to you and your dh. So unfair you ve got this to deal with too but like determined said sperm can really be improved with supplements and lifestyle things. Also at some point it got you preg three times so dont lose hope that it couldn t do again.

Afm I ve being trying to obsess less as its impacting my life and our relationship. I was panicking as my cycles had gone wacky after one go of pred and feared it had tipped my ovaries closer to the big M ! However they have settled back to a day 13 ov and day 3 bloods were ok ish. My fsh is 10, was 9 in nov and 7 a year before that so creaping up and i don t want it higher but had feared it would be alot worse. It does mean however i need to get on with it so managed to pluck up the courage to take the Humira last night. Injection went ok and so far no issues but only one day in, pretty nervous about it really but decided i can t look back and regret not trying it so fingers crossed it brings my cytokines down, have to take next one in 2 wks. Also had a talk with dh, he s happy to have another baby but is questioning contiuing as the process is taking it s toll. We ve agreed 6months more then that s it we need to get on and enjoy the life we have. Dr S said he now advises continuing to ttc while taking humira so i m day 13 and should be ovulating today so it ll be onto the tww for me tomorrow.

Hi sunny. Sorry about DH result. But don't worry-the number and morphology are imp too and if they are ok u will get preg again (and u know u can). My Dh had a very low count (5 million, 20 normal) , poor mobility(38, think 50 normal) and morphology was boderline (5, 4 is notmal) So it was shit! As the consultant put it "there's not many there and they are not very handsome" . In fact his face dropped when he saw the results and was quite rude to my dh saying "they are terrible, I wasn't expecting that with your pregnancy history". Good job by dh has a thick skin!!
He also said of course u can get preg with these results but the chances each cycle are a lot lower than a healthy soerm count (5 percent vs 30 each cycle). We are still perplexed as we had no problems getting preg before. I keep wondering is stress has dropped them, as nothing else has changed except he's on supplemtns and drinking less! (Never tested them before but really, I got preg average of 3 Months - that's not consistent with the result we have).

Get your dH on supplements, eating well not smoking and not drinking. Drinking 2 l of water. Lots of berries, tomatoes and nuts. These were the advice from my clinic hand out! I'm literally force feeding these to my dh! He ipens his lunch box and has all sorts of surprises these days, These tests We had were when my dh had dropped his drinkings and already on supplemtns for 6 months so I don't have much hope of them getting better!

Recheck ur dh in 2-3 months and hopefully they will improve. any cough/flu can impact the results too, was he I'll 2-4 Months before? And also rem Mobility is only one part of it. And u can get preg, there's just slight delay.

I know how awful I felt the day I got the news. I felt like it was all against me. But now I feel better at least I'm doing something about it. And it's better than waiting month after month for a bfp which is really getting me down. I feel like I'm at the point that I can't keep waiting and waiting. I want to get on with it and have given it a year by the time ivf starts to happen naturally and it hasn't. I'm not gonna lie, I'm scared and the thought of a bfn after all that effort is awful. But I'm in denial Mode and trying to not think about it!

Rosa-hope ur ok. Why no hcg yet? I logged on hoping to see ur news. I can imagine how terrifying it must be. Just try be postive and tell urself ur due ur good luck now. We are all sending u all out postuve vibes. And eat the choc pudding! Honestly it's not a problem I'm sure! Even zita west says 80 percent good 20 bad is ok and achievable.

Determined-sorry re ur lp. Do u have acu? It may help? But another expense? Also, I think u found SO helped your cycle? Maybe that's the way forward for u. Don't give up hope. We can't! Hopefully happy story no 2 is on this broad and we will join one day soon.

Hula and dildoos thinking of u both.
Sorry if I missed anyone.

Sorry Sunny, but don't give up hope.. You've got preg before. My DH is also in low side. A lady I saw for reflexology recommended this...www.spermcomet.com
Might be worth a look. She's adamant there's a lot that can be done to improve all aspect of sperm that can make a big difference. X

Massive hug Determined. It's so odd isn't it.. Not knowing what's making things work and not. I still don't know my 2nd hcg result so no idea if this is looking to be on right track yet but I can only assume SO helped conception after 7 months of nothing. I did also consciously start carrying water with me and drinking more, as well as cutting out (ok seriously reducing but not exactly as strict as I'd intended) gluten, dairy and sugar. I felt better for it and whether that made a difference or it was psychosomatic who knows!
We all know it's a numbers game and a lottery... Cruel but almost everyone gets there somehow if you can persevere. I always indulged in my moods if I could rather than fight them- cosy up in bed and read and watch a series etc.. Figure it's better for you than to kick yourself when you're already feeling low. I doubt this helps but don't feel alone. We have all been there, are there or might be there again. One other thing I decided in Jan was I didn't want a year to go by with my life on hold so was going to do one amazing thing a month anyway with my OH - and think that started to help too. Maybe... Finally 2weeks before I conceived I started accu again. Def think it helps balance hormones etc. I can't be a case study though as way too early and had worrying pangs last night. Take care and hope you're feeling better today x

Sorry to add yes prog is normally from positive...

So I've just had a meltdown!'

Big hugs rosa, this time is so hard and you just have to try to stay strong! .a choc pudding will not send your immune system mental enough to cause any issues and I know many people who dyed their hair...although I did and mcd just after but I don't believe it is that. I have read that highlights are better as less dye and not touching skin like permanent so perhaps that is an option??

My period started today with another 6 day LP which is the worst I have ever had, twice in a row now so I just feel like giving up...I know I am probably hormonal and I felt I had a plan but I just don't get how my immune system has got worse...what is making it more aggressive?? Saw another new preg on FB of someone who hasn't 'looked after' themselves of you get me and I'm genuinely happy for them but also feeling a bit why me and I don't get it right now and of course a complete whiner!!

P.s I took prog after ov for a few days due to my rubbish luteal phase. Not on it at moment obviously but maybe I should start?!

Sorry for rant!! Just feel like trying so hard and I can't even get a normal period!!!

Thanks for positivity from everyone .. I'm full of dread about blood results tomorrow .. Managed to mentally move through the next 8 months this weekend and don't even know if it's a strong pregnancy yet, never mind got past previous miscarriage dates. At some point in the next month or two my work is going through a restructure and just worried I won't be at my best to keep my job too. Worry, worry, worry. I've been so good with food too but tonight had a melt in the middle choc pudding from M&S and now stressing it will cause my immune system to flair. I'm going grey with the worry and stressing I can't dye my roots.. Does anyone else have a view on hair dye when preg?
Well sorry for another stress update. What will be will be. I need to keep repeating that!
Determined, what stage are you at now? Hope you're ok.
Drttc - make the most of the trip.. It will happen and for now you're in my favourite continent. So jealous. My sister in law is Chinese and we were there 3 weeks when my brother got married. And traveled a bit in SE Asia and would love to go back on another holiday .. No flights for us for now though. It sounds like you're taking cyclogest from ov- is that right? I was told to take only from positive. Sorry if I'm being thick. X

Congrats Rosa!!!!! I agree with staying calm... Try everything that you consider soothing!

Glad to see things are progressing nicely for everyone! Big wave hello to you all!

Still in Asia and have been lurking here :) Got a BFN though with a first response on the day AF was due so slightly disappointed! But at the same time I know there are lots of positives to not catching this month (I've not been on hydroxy for the recommended 6 weeks, it's not been two cycles since I last miscarried, I won't have to pay £380 for a Saturday intralipid at home when I get back, I can drink in Asia.... List goes on!). But still kinda wish is been positive- illogically! Waiting on af to show (stopped progesterone/cyclogest two days ago) so I can start again :)

Thanks Determined.. I'm going for accu today which should help .. Woke at 4 again and my jaw was clenched! I should be exactly 4 weeks today.. If only could speed up time just a bit.. I'm wondering if will need to increase my levothyroxine now.. Also the nhs consultant said take the cyclogest twice a day but currently doing just at night. Hmm
Anyway next news from me is Mon when will see if the hcg was rising as it should and book the intrallipid.. All being well will then need to figure out when to arrange first scan ..eek.
X

I agree and would be pretty narked!! As there should be someone there at all times!

I'm a high thyroid antibodies girl like you (amongst other things) and on complex so I hope that also helps?

Yes you need to try and keep calm as we all know how stress is bad (even though this has got to be in the top anxiety/stress causing experiences ever!!) the test is darker so keep reminding yourself of that! You are headed in the right direction

Am so positive for you!!

Xxx

Thanks Determined too- good to know he was relaxed on timings I guess .. I just feel a but frustrated it wasn't possible to get the treatment I was recommended because the holiday cover wasn't there.. Anyway, need to worry about what I can control, not what I can't. X

Thanks Hope. I seem to remember you didn't have the same profile as me though.. I'm v high and active NK plus high thyroid antibodies and cytokines and TNF alpha .. Pretty much the the lot! It's why I'm on the complex programme and just stressed not doing enough as Humira and hydroxy didn't work for me. Need to stay calm as stress won't help I know. The docs didn't have my results so need to wait until Mon now. I did another test this morning and it was darker I'm sure.. But it's what happens between 6-12 weeks I need to worry about .. I'm only just 4... So early. Thanks so much for messages everyone .. Means the world to have this support. I hope you're all feeling zen and positive and the weekend has begun x