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

[sunnyday01]

Continuing from 13th thread

Sorry what's tx? :)

Sorry, meant treatment

Haha!

Is it higher folic acid? In which case my nhs consultant have me that anyways so I think that's why I didn't bother getting it checked with mr s...( ps do u take the higher dose on bfp?)

Doh! Sorry

Didn't have any NHS so i did all blood clotting and immune that he offered!

Well he doesn't 'treat' per se. Just recommends high folic acid (as its to do with folic acid conversion) and I have aspirin. (However some consultants mainly seems to be in US also treat with things like heparin). That's one q on my list for next week!
As usual there is lots of mixed evidence!!

No same amount all the time

Ok, my nhs consultant gives everyone the high folic acid dose as "it can't do any harm". So I suppose I'm on the treatment anyways, except I start it from bfp. But I might ask mr s to test for it when I see him depending on if I get preg! And I'll be on the aspirin too....

I'm glad my story provides some inspiration as I found this thread kept me going and I was addicted to reading it every day for success stories!
I've been reading your posts on pred from ovulation and I know that it stopped me from conceiving and messed my cycles up. I was with mr s and he told me to try 10 days from bfp but that still didn't help so just tried hydroxy. He said it was up to me if I wanted just hydroxy - there was no point in taking pred month after month if I couldn't conceive. By the time I tried just hydroxy my cycles were so messed up that I had to try SO with mr s using with the hsg shot when the follicles were the right size. I conceived first time on 2 goes but have chemical pregnancies both times. I'm convinced its because my body was still messed up from the drugs. I then waited 3 cycles, and tried SO again. In this time I relaxed, went on a health kick, cut out sugar, lost weight and tried to forget about TTC. First go back on SO just using hydroxy i conceived and started pred from bfp plus intrallipids with mr s. This pregnancy got passed the magical 12 weeks but then we had the devastating news that our little girl had neither kidneys working at the 20 week scan so i had to terminate her. It took me nearly a year to get over her loss in which time had an amh test done to see realistically our chances. Another awful result as it came back at 0.57 which meant no hope of using my own eggs. We tried one round of ivf at the lister but this was abandoned due to poor response. I felt like everything was against me at this point! Mr s said to keep trying SO but cost was spiralling out of control and DH was worried about the drugs my body was having so I started looking at other consultants who used a less harmful approach. That's when i decided to try mr ndukwe at zita west. I was already having acupuncture with one of his affiliated practitioners and taking their vitamins/following advice in their conception books plus Chinese medicine ideas (keeping feet warm etc) to aid conception. The first appt he was very thorough and took about an hour to go through my history etc. I initially went to see him to talk about possible egg donation in Spain with zita west providing immunes but he told me that I wouldn't need it and to try with my own eggs. He didn't believe amh figures and that as I was still conceiving it wasn't a problem. He suggested that I started off having intrallipids at ovulation once every 3 months and preds at bfp. I had some hydroxy left so took those too as well as high grade fish oil tablets, aspirin, pregnacare, vit d3. I asked him about co q 10 and dhea and he said it wouldn't make a difference but it was up to me. I had taken both for a few months when I tried ivf but it hadn't made a difference to the response so didn't bother again. Intrallipids at ZW are at cost price so a lot cheaper than other clinics which meant i could try it for a few months without thinking it was money down the drain! I conceived the first month but then ended up losing the baby at 8 weeks due to severe food poisoning. Restarted the intrallipids again a couple of months after the d&c and then decided to try one round of SO with ndukwe. He tried me on gonal f rather than letrozole as he believes that it provides better quality eggs plus the higher you stimulate the more likely it will effect egg quality. This made sense as when I was doing SO with mr s on letrozole I would get 3 follicles whereas with mr n I only produced one. I was really upset to only get one follicle as thought that it's the same as a normal cycle but mr n said 'it only takes one, how many do you need?' He also said the timing of the hcg shot was crucial due to egg quality so they did it whilst I was at the clinic. Anyway the one follicle did work and I now have my little one fast asleep on my lap. I don't know how much of finally achieving our dream was down to trial and error but I wanted to write this large post incase any of you see something that worked with us that you haven't thought of.
A few things I think helped was having weekly fertility acupuncture, fish oil tablets, vit d3 tablets, the 3 monthly intrallipids and keeping weight down as it effects the hormone levels to conceive. Also trying where possible to carry on as normal and not let it consume you (harder said than done). After losing our baby at 20 weeks in 2012 I realised that the immune treatment could work so it made me want to carry on. I'm not so sure I would have carried on for 5 years if it hadnt have happened as had no idea what to try or who to turn to. duggs and I used to spend ages analysing success stories and treatment plans to see if there was anything we could find to help us but she is proof that all the medical intervention in the world didnt make any difference as she conceived naturally after failed ivf rounds and SO. She did have fertility acupuncture with the same practitioner as me so maybe that was the difference as was the first time she tried it.
Anyway if anyone wants to message me with questions etc please feel free as I would love to help you all. Sorry for the massive post!

Thanks for ur message sue-that's so amazing to hear everything. I think we have all been analysing stuff too! Very kind of u too to come and do that for us all. I can't bel what u have been through. Well done for being so brave. Amazing.

I've only taken the pred for 3 months and it hasn't had an effect on my cycles and I'm still ovulating but still no pregnancy! I got paranoid so got off it after 3 months. think weight is def important and I've totally changed my diet and I'm hoping the weight will come off too (although my bmi is 25 I figure it can't hurt to loose more)
I'm having acu, on the high dose fish, and vit d. I'm trying pred for one last month and then I'm only taking it from bfp!

I have heard about SO causing more chemicals but I didn't know how true it was, it's not something I'm keen on pursuing as I do ovulate every time

I think it's just nature. Duggs is proof of that. Ivf and SO didn't work then she did it all on her own. It's such a lottery and a waiting game.

So glad u both have ur babies.

Forgot to say before that I have a bag of cyclogest and a few prednisolone if anyone wants it? I can post it out.

Also free gave me a Doppler which i am happy to pass on to someone else so again I can post it out if interested. free are you still happy for me to do this? I should have given it back a while ago but couldn't bear to open the bag before with stuff I used for Scarlett's pregnancy. Thanks again for giving it to me! Hope everything is going well with your two little ones.

trying i think all the ladies on here are brave! I think if you are ovulating then as you say, don't bother with SO yet as it's probably best to not mess around with drugs if you don't have to.

Forgot to add earlier that another thing that was different with this pregnancy was that mr n told me to come off aspirin after a bfp and switch to clexane as he believes that aspirin can effect implantation. Might be another variation you ladies can try? I restarted aspirin again at 12 weeks and stopped the clexane.

Wow! Thank you so so much for taking the time to post your story (which I am feeling really emotional about) you are so strong and brave and just shows it's possible to get your dream! The info is invaluable so thank you thank you! It seems a lot of it is finding the right formula combined with perseverance!

Having had my 4th miscarriage only this week (2nd on treatment, 1st on treatment was on SO and I would describe as more of a CP as so early) I am feeling the frustrations on treatments/meds not working and that whole will it ever happen thing going on. My DH has been great and positive and believes we don't have the right mix yet (and concerned about the power of the drugs) and you are testament to that so thank you! (Again ;))

I'm also considering seeing Dr N as I believe in the more holistic approach. I have an appointment with Dr S next as I want to review my plan so we will see what that brings. I may end up changing.

Thanks for the tip about gonal f and also clexane! I will bear that in mind for my next appointment.

Also re: diet did you do anything in particular? I have (on a temporary break) cut out gluten (for thyroid antibodies) and eat low gi (for pcos) but wondered if you avoided/added anything in particular?

Such an amazing story Sue I/we are so grateful for you taking the time to post! Enjoy cuddles with your precious little bundle

Xxx

Him sorry I have been distant but I got my bfp last week. After thinking so round 5 hasn't worked I got a positive on 15dpo - I only did a test because my period hadn't arrived.

All seemed to be well - I've had really sore boobs thus week and went for my drip on Monday. Sadly this morning I have had blood when I wipe - I can't believe it - I'm not really sure what to do - to be honest I'm a mess.

Sunny I am so pleased you got your bfp and don't apologise for being distant! It's a major head mess getting a bfp for us RMs. Your world changes in a second and whole different type of anxieties crop up going from elation to fear and back a million times over!

Do you have support from your doc and epu to put your mind at ease?Can you contact them? Will they do a hcg/scan? The sore boobs is a v.positive sign!

I was Mrs Anxious too (just check the board!) all I kept reminding myself was I have done everything in my power, I have the meds helping me there is an 83% success rate on treatment! Try and stay strong and keep positive! It's so hard (I know).
Sending positive vibes your way!!! ?xxx

My sore boobs disappeared yesterday :( Idon t see any point going to epu - they will make me monitor it and then see me in the week if they want to scan, which is what they did before. I've just got to try and sit it out until Monday when I can speak to louise.

I understand, felt the same. Louise told me to up cyclogest if I spotted (please not I am not a doc and of course not able to give medical advice) but it may help you feel better?!
Try and keep busy if you can, I found that helped too! X

I did wonder that as thought I had see you mention it - did you do one in the morning and one in the evening?

I just can't believe it, after all this time trying to get pregnant I thought being on the treatment would make things easier, I completely broke down when I saw the blood - it's only when I wiped but still concerning - it's still so early as only 5 weeks today. I don't seem to get beyond 6 weeks without bleeding

I'm also worried that my sore boobs have gone as this is what happened last time

Oh sunny. So I don't want to sound cliche but a lot of women spot and are ok. Is it still happening? And is it fresh?
Pred can make symptoms too?
I really hope it works out, and def up the cyclogest it will do no harm and its what mr s advises too.
I have everything crossed for u.

Maybe the pred has made the boobs disappear. Oh it's so stressful and crap.
I suppose at this stage they won't see much on a scan. But honestly spotting doesn't mean it's over.

Thanks for your support - it's so hard to deal with. I just can't understand why my boobs have been so dote for a week and now nothing? Surely the pred wouldn't make it change that quick?

Blood was a dark red rather than bright red so in theory it's old blood but I can't help being so very scared.

I can totally understand. I broke down last time and I couldn't deal with the anxiety at all. It's so so hard. I'm terrified of falling preg again. I'm so sorry.
But try stay strong, u got over hurdle one of getting preg. And up the cyclogest and speak to Louise. Prob will have to wait till 6ish weeks for a scan so they can see something meaningful. Can u book that in now so u know u have a scan to see how things are?

Just tell urself u did everything u could. Ur on the pred. And it still isn't over - think postive (totally impossible I know)

I've got a scan booked in for the 4th feb (a week on weds). It is totally the anxiety of it all and just not knowing. I thought being on this treatment would make things easier but this is just how my first mc started

And sorry for not sharing my news, I thought if I didn't tell anyone it was like it hadn't happened. We only told our parents two days ago and they are so excited I just feel like I'm letting everyone down. I just do t understand why - I'm on the treatment why isn't it working?

Don't say sorry! I can understand not telling anyone...in fact I think hope and determined held off too....it's natural.
Ur not letting anyone down. It's just shit luck. I'm so sorry.
Could it just be a bad egg? There's always a 20
Percent chance of miscarriage anyway?

Anyways none of this miscarriage talk. U are hopefully fine. I really hope u r x