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!

Hi ladies,
It took me 6 cycles of pred. And I definitely did end up with a bloated face and an insatiable hunger. BUT as soon as I stopped hem at 14 weeks it went. I haven't put on that much weight and I'm now 30 weeks. It is DEFINITELY worth any side effects if you get your baby at the end of it.
I know it can be worrying starting drugs that are a bit controversial but Mr S has phenomenal results. You guys have sought his help, so trust in his plan. I promise you it might not be easy but it will be worth it. He wouldn't prescribe you something if he didn't think it'll help you.
Nothing is an absolute given - I mc'd on treatment, I was gutted. But we had the product of conception tested and it was a chromosomal abnormal pregnancy - no drugs can stop that, it would have happened with or without high Nk cells. I decided to put my trust in the plan after that and thankfully 6 cycles later it paid off.
Good luck, look after yourselves and stay strong. X

Hello,

Just wanted to say I was on a double dose of hydroxy from April 2015 through to my third trimester (June 2016) and did not experience any side effects whatsoever- except for my chronic hives completely disappearing after having them for years!

As far as Pred goes- I had a weird cycle when I first tried it which really confused and upset me. However, after I miscarried on treatment I decided to really commit to the programme and took Pred from ovulation to AF for 6 months until I got my BFP. Dr S believes the influence of Pred builds in your system so it's worth taking every month. In this time I didn't feel any effects as I think the break you take every two weeks prevents most of them. In pregnancy the prolonged use did give me horrific acne and possibly contributed to weight gain. All better now though! Currently have my little boy sleeping on my chest :-)

I was also on pre ovulation intralipids for a very aggressive immune system, and I did take all sorts of supple any like the Coq10 and wobenzyme- but not DHEA. Hope this helps!

Thanks for the info, all helpful. meaninglessness, DH and I have agreed that the next mc is game over but after so many unexplained mcs we forgot that there can be actual reasons for them, so you've got me thinking. Did Dr S get the testing done to check for chromosomal abnormalities? My hospital did it for me once but it was a battle I don't really want to go through again.

What's hydroxy, and what's wobenzyme drttc (and are you going to change your username now?)

Not sure if that post was directed at me Yomping, but yes we had the test via DrS' lab. He gave me a pot with the form, I then had to get the pot and contents to the lab myself. Bit of a pain in the neck but I didn't trust the NHS to not lose it and they take ages. DrS had the results within 6 weeks L.

Sorry, yes it was. Autocorrect was trying to be helpful. That sounds like a hassle but at least he provided the means to do it.

Hi all, I am back with the test results which proved a genetic anomaly :( basically 'just' bad luck, so I will be continuing on the same protocol and hope for the best.

Btw, my tests were done NHS (twice now) and took 6 weeks to get results so I cannot complain. I spoke to Louise and she said it did not matter were I have them done, it is the bery same test.

drttc cograts and enjoy Very happy for you!

yomping welcome to the group regarding the steroids, my treatment worked the first month so I continued after the 10days as I got a BFP, until 8 weeks pg. Hunger, water retention, piggy face and round belly-had them all. Sadly lost our baby and now 2 months later I am still not back to my normal shape, which after previous mcs was easier and quicker. I assume it is the medication as it never happened before. Haven't heard the expression 'moon face' before but googled it and yup, that is the sort of face I have :(

karyk hope you are feeling better, how is everything?

It was a bit of a hassle but I was worried it might get lost in the NHS. There are always horror stories out there. I know it's normally the exception rather than the rule though.

Case - I know it's hard to hear that it was a genetic fault but you can at least take comfort that the treatment was working for you. Hopefully next time will work perfectly for you.

hello
hope you are all well.
has anyone used coenzyme-q10 whilst pregnant or only whilst TTC?
Re; heparin - Dr S said I do not need it, my NHS consultant thinks I should take it. Has anyone been on it and any probs?
Thanks

I took Co Q10 carryon. And have been on Fragmin which is a heparin treatment from bfp and will be on it until baby is born. Why is your NHS consultant suggesting it? Just in case or have you had some results that indicate it?

seeking yes, fx it works the next time, I suppose you are right, the fact that a fault was found was a much better outcome than a previous 'no anomaly' and no explanation.

And yes, on one occasion I had to chase up some NHS results (for a relative) and it took 4 months to find them rather than usual 2 months- they got lost and were found after I made fuss and pestering So I understand your worry

carry I use coQ10 (and also Maca) always up to a BFP, so pre-pregnancy and the first 3 and a half weeks of pregnancy, I have not found any official studies that would indicate whether this is right or wrong, but many supportive articles of women in other parts of the world using them all through first trimester, it still did not persuade me to continue to use, but it has been done; not sure of any possible side effects as both are co-related to the quality of eggs and implantation. Or am I missing something?

Hi, I'm back! Was here briefly on here last year as lilliesandchocolate and have been on in the past as hopefulfor2nd.

Quick question before I ramble..... Epsom, can you get intripalids anytime? Surely not just wed and Thursday that they advertise appts for?

Hi all

This is my first time to post on a thread. Congrats to all who have their little babies and good luck to those still trying.

DH and I have been trying to conceive since late 2013. I have Crohn's disease, which currently is stable, but due to multiple surgeries/scar tissue have been unable to conceive naturally. We have had 1 fresh IVF cycle and a frozen embryo transfer, both of which have ended in miscarriage at 5 weeks. The most recent a couple of days ago.

I am 30 years old. Our fertility consultant felt the first miscarriage was likely to be chromosomal and reassured me he felt it had nothing to do with my crohns. I can't help thinking tho that it has everything to do with immune issues and that my body will continue to reject every embryo.

Has anybody had an autoimmune disorder like crohns and been successfully treated by a reproductive immunologist? The more I read the more I think it's a path I will have to take despite expense.

I have been looking at dr s and wondered also if he treats patients undertaking IVF?

hopeful hi, welcome back. For intralipids, it seems Wednesdays and Thursdays are the easiest for the clinic, but they are there on Tuesdays too, and alternate Mondays and Saturdays- from what I understand a midwife and a further qualified back-up staff needs to be around for the intralipids to be administered. Best to call them, I am sure you will find a day/time that works.

Have you done intralipids in past?

copper
Welcome on the thread, sorry to hear about your mcs :( hope you are recovering well after your recent one, be kind to yourself and take things easy (and treat yourself if you can!)

I am [shocked] the fertility consultant felt so confident in stating chromosomal anomalies without the actual testing done!! Nobody can know this and it is wrong to assume. And yes, I do believe that sadly autoimmune conditions may prevent the body from carrying a pregnancy to the end (my opinion-my belief), we all do our own research at this stage.

To answer the second questions, I know of people who are undergoing IVF/ICSI and are under care of Mr S

TTC for 1 year and I've had 2 chemical miscarriages.

Referred by GP to Guys Fertility Clinic, did all the usual tests like FSH, Progesterone, internal scan, ovarian reserve etc

Found out I had slightly underactive thyroid so on low dose of Levothyroxine. TSH levels is now about 2 (was nearly 6) so I think this is now OK.

Also have high levels of Antiphospholipids in blood (IgM anticardiolipin antibodies was 21.8 doctors advise it should be under 10). These antibodies cause clotting and APS so advised to take low dose aspirin when I get pregnant again.

I want to get tested for natural killer cells but I don't think the NHS does this test?

Is there a link between low thyroid issues, high antibodies and Natural Killer Cells??

In the meanwhile (just in case I have high levels of NKC) I'm looking at way to reduce them naturally... so far the only information I could find is:

-Take omega fish oils
-Cut down on gluten, sugar, caffeine

Has anyone else had this test done in London?

What clinic did you go to?

Was it expensive?

Any information or advice you can give?

Hi user. Welcome. I'm sorry to hear about your miscarriages. I just had my first appointment in Epsom with Dr Shehata (at the miscarriage clinic). I don't know anything about low thyroid issues but I'm sure someone more knowledgable will come along. The ladies on this thread are extremely helpful. I have also had the basic tests done on the NHS (they all came back fine). The cost for my appointment today was £2000 (that included the initial consultation of £250). I had a whole bunch of blood tests to done and will find out my results in 2 weeks at the follow up appointment. Dr. S starts all his patients on Pregnacare + Omega 3, Vit D and low dose aspirin.

Hope this helps xx

Hi Copper and User - sorry for your losses 

Copper - I think it's reasonably acceptable to think that your chrons could be playing a part in your struggle. So I would look into it if I was in your position.
And yes DrS does treat people alongside ivf

User - not sure if there is a definite link but it's very likely you could have a number of issues going on. I have a blood thrombophilia along side high nk cells.
And you're right, presently immune testing is not something that is funded by the NHS so unfortunately does involve the cost of private testing, which as PJ says can start at around 2k.

Pj hope you get some answers at your next appointment and are able to move forward with a plan! Good luck!

Hello everyone. I joined the thread a little while ago but haven't been back since! I have 1ds but now am doing the Coventry plan for raised uNK's after 3 mc's TTC #2 since March 2015.

I'm cd21 and about to start taking progesterone today, and if we get a BFP on cd28 I will be starting prednisolone.

Freaking a bit worried/apprehensive. Just nervous of side effects and also worried about risk of cleft palate in baby. Anyone know much about this?

I also know that hormones of any kind tend to send me a bit wobbly batshit crazy and I'm scared that things will be a bit tough for a while. Did anyone else notice mood swings on progesterone?

I think we have had a period of calm for about 5 months while we stopped TTC after last mc to have investigations and give ourselves a break. I'm nervous to enter back into this crazy world and put us through all this again.

Also - has anyone had success with Coventry? I'm hearing a lot of good things about shehata and I know their plans are similar but I notice shehata seems to be a bit more thorough and intensive. Wondering what our chances are on Coventry.

Thanks ladies x

Hey everyone and especially hello to all the new faces.

I can't type for long but just wanted to say there's another of dr s' success stories in the daily mail. I know some people don't like to look at it but for those who would like to here is the link

www.dailymail.co.uk/femail/article-3764763/Couple-gave-home-fund-IVF-SIX-miscarriages.html

Hi all, quick couple of Qs: I got a positive on ovulation stick today, and I know that means I'll ovulate 12-24 hours from now. So do i start taking pred today or tomorrow? I'm bloody terrified about taking it.

Also while browsing I came across people that taper it after 2 weeks if not pregnant. Dr S only mentioned tapering if I take it for the whole 12 or so weeks. Has anyone been advised to taper when coming of it after 2 weeks?

I started mine same day as the positive opk and it was a lucky first month of trying There is no need to taper if taken for 2 weeks or less. I felt great on pred - good luck!

yomping

I would start tomorrow, then test on day 10 of using predn with a sensitive test like FRER and if not pregnant, just stop taking it, no need to taper after such a short time. These are my instructions, wonder if different people have different protocol on this?

MattsMamma maybe it does not matter that much when we start, I started the day after I had a + OPK on two occasions and both times resulted in a BFP

Envious of you feeling great on predn, it gives me all sorts of attractive side effects

I'm also a bit nervous about testing after 10 days, I have had negatives with fr that early but still got positives on internet cheapies and fr took a few more days to show a positive. If fr shows negative, what if I don't believe it?

Welcome to all the newbies in here! Sorry you find yourselves here but hopefully you get some great support in the crazy journey!

Hello to all the oldies - hope you're ok. Can't remember if any babies are due soon?

Re: pred I took it for about 8 months for the 2 week period and generally felt ok and dudnt seem to suffer any side effects. I took it from day of ovulation and then tested at 10 dats if I got a negative I'd stop but then test a couple if days later to make sure and then again a couple if days later if AF hadn't started. I didn't have to taper after 2 weeks.

When I was on ored for 12 weeks I did have some side effects - mainly wanting to eat carbs but not much else - think I was lucky but it was all totally worth it. I actually got my BFP when I was in a break from taking pred so just started taking it when I got my bfp (4 days after AF due) but I was also on another drug called hydroxy which may have made the difference - who knows! All I can say is that every day if taking drugs and every side effect us totally worth it if you get to have a baby at the end of it

I'm the same as Sunny, took it for 6 months (10 days ov - test day). No problems at all.
Fell pregnant on 6th cycle, continued with pred and weaned off over two weeks from week 12. Again no massive side effects except increased hunger.

I was also wary of testing so early as historically I don't tend to test positive until 12dpo but I'd still stop the pred after 10days regardless and test again a couple of days later if need be. Then re-start pred.

I'm currently 33+3 Sunny and cannot believe how quickly it's gone. I'm still no where near organised.
Tumtimes you must be around the same date aren't you? I know we're close.