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

(992 Posts)
sunnyday01 Fri 06-Feb-15 20:10:37

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

sunnyday01 Fri 06-Feb-15 20:15:07

Continuing from thread 14

Rosa27 Fri 06-Feb-15 20:21:49

Thanks Sunny - I have a feeling there will be more good news on this thread than last - fingers x

Tryingno1 Fri 06-Feb-15 20:26:09

Yes I agree rosa! We had one good news on number 14, so we should have at least one more on this one if not more!

sunnyday01 Fri 06-Feb-15 20:31:23

I am the world biggest wimp when it çones to anything medical esp needles! The injection is really easy - the needle is super thin and I don't even feel it - probably helps that I have so e padding on my stomach! The injection is one if those eon things so very easy to use - it takes longer to set it up than to do the inje tion

Smidge001 Fri 06-Feb-15 21:24:59

Hi there. I'm in the middle of my third IVF attempt. We managed to get 1 blastocyst in our first two attempts but BFNs both times. I've had a laparoscopy (all fine there) but they took samples of my uterine cells which show high (or very high.. Not sure the criteria!) NK cells so this time I've been taking prednisolone, had an intralipid infusion last week, and will start Clexane injections again after egg transfer. (We tried Clexane last time but not the steroids or infusion and I'm not looking forward to the blunt needles that seem to be used for them! The other needles needed during down regging, stimming and triggering are way thinner and sharper).

We only got 6 eggs this time (vs 10 and 8 on our first two gos) so I'm nervous now that we're making all this effort to help implantation but we might not actually have a blastocyst to transfer back!

Anyway, I have joined this thread a bit late in the day by the looks of it (15th?!) but hope you can give me any advice/encouragement etc. We will be hearing back today on fertilisation rates and when I need to increase my dose of prednisolone.

Determined123 Fri 06-Feb-15 21:30:43

Yes good news for this thread only smile thanks for sorting sunny!

No probably won't do SO for a while. The last preg was a bit of an accident (accident in the fact that we didn't think it was possible I could preg without SO or herbs) so will probably leave for a bit and see how my cycles pan out. I only had an 8 day LP so if I can get more than 10 I may leave it. If not will be straight back on it. Progesterone alone didn't help it.

Yes the needles look scary (sort of) by the very nature they are needles but they really are just like a little scratch or more like an itch tbh. Very quick and easy!

Tryingno1 Fri 06-Feb-15 21:35:14

Hi smidge. Welcome! We have a mixture of ladies on here! Most of us are on the pred/intralipds due to recurrent miscarriage. A few are having super ovulation to help speed things up. None of us are having ivf (currently) but hope we can help with hand holding (but maybe not with the ins and outs of ivf) but def with the pred/intralip part! U only need one to implant so I hope with the immunology back up this time It works!

Smidge001 Fri 06-Feb-15 22:25:48

Thanks trying. I'm on another IVF thread but most of the ladies there aren't having the immune treatment so I thought I would spread myself around a little! My husband and I are a bit anxious about the prednisolone after reading a few studies on it. I'm taking 5mg of folic acid and extra calcium (plus a pregnancy multivit) which I understand can help counter some side effects but still a bit nervous. We saw this (below) on the hfea website which put the freakouts in us(!) but I think they are often very cautious when enough trials haven't been carried out, so we've ended up going ahead with what our fertility clinic advises anyway.

Does anyone here know why you have to 'wean' yourself on and off the prednisolone though? What would happen if you just stopped cold turkey? I've been told if the IVF doesn't work out that I need to reduce my dosage by 5mg each week, and just wondered why.

Corticosteroids are a type of drug (a synthetic hormone) that can suppress immune responses, and are routinely used in the treatment of arthritis, asthma and other autoimmune disorders.

However, there is no proven advantage in using steroids in the first three months of pregnancy, and the risks to you and your baby outweigh any possible benefits. The National Teratology Information Service recommends that pregnant women avoid all drugs at this stage unless they are likely to benefit your health.

The Committee on Safety of Medicines says that corticosteroids taken in pregnancy can carry a small risk of poor fetal growth, though there is little other risk to the fetus.

A clinical trial in Canada tested the effect of giving pregnant women, who had previously suffered two or more unexplained miscarriages, a corticosteroid (prednisone). The study found that prednisone didn´t prevent miscarriage, and increased the risk of high blood pressure, diabetes and premature birth.^

Hula2 Fri 06-Feb-15 22:32:14

Hi Ladies and welcome Smidge, fingers crossed all your eggs fertilse and give u super embbies to transfer.

Thanks for setting up the new thread sunny.

Trying glad your scan was better. I seem to remember having an 8mm scan on day 21 before i had ds and was really paranoid about lining as i had really light periods after being on the pill for yrs (1 day red bleeding but not very heavy then 2 days red/brown then stop). I concieved him next month so fingers crossed it s just something that needs a little encouragement.

I m feeling the positive vibes for this thread too, lets go ladies, sticky beans to all !

dildoos Fri 06-Feb-15 22:46:01

Thanks for the new thread sunny! Now going to carefully read back posts ! Scrolled to tryings as needed to know how you are and good news it's gone up and even better news you know your next steps to getting that baby of yours! When you booked for next appointments with consultants ? X

Hey everyone else now going back over all posts xx

Hula2 Fri 06-Feb-15 22:50:02

Smidge, re the steriods i understand your concerns, i ve done the same research and got a bit wobbly about them too however hfea will not endorse treatments until they have controlled studies which just are nt out their yet so will always take the mega cautious line. The doc most of us are seeing (mr shehata )has been using steriods for 10 years plus with alot of ancedotal sucess. He warns of poss sl inc risk of cleft palate but hasn t actually seen this in his patients. My prob is more infertility than rcm, i have had one son after ttc 2yrs and then one miscarriage, now ttc 9mns since that. I have raised blood nk cells so have been adv pred/intralipids. I do worry about the what ifs of taking anything in preg but similarly what if i don t then miscarry again. I think you ve got to trust you instinct and your specialists advice. Also some of the reports of using pred snd causing low birth wgt/high bp may be including women having it throughout preg not just first tri.

Re tapering it is important to do this if you take them longer than 3wks as you body will stop producing it s natural version (cortisol) so if your withdraw the drug version suddenly ur body will become deficient and this can cause a serious adrenal insufficency so definetly follow instructions on tapering.

Hula2 Fri 06-Feb-15 22:55:12

Hi Dildoos, hope you re doing lots of chilling and taking it easy on you self.

Determined - hope you ve seen the back of those headaches now.

Tryingno1 Fri 06-Feb-15 22:56:15

Smidge-don't worry re hfea advice. All the ivf clinics with best rates and the miscarriage experts who have good rates give pred if clinically indicated. The reason the hfea can't support it is that there is not enough high quality evidence. In a few years in will come about, I'm sure of it. That's how most things in medicine come about. They are seen a rogue, based on poor evidence etc. then 10 years later its like - oh actually yeah it's works! Which point to late for us! I must say I'm not convinced by intralipds but I'm having them when I fall preg anyways as our consultant suggests them. But they are even more of the wall than pred! But who's to say it doesn't work?

Def wean down on the pred. It's very dangerous to just stop. What happens is u take the pred-so your body stops making its natural version as it no longer needs to-it kinda switches off.... So when u stops it suddenly ur body can't make it as its got "lazy" and u can have v serious consequences (this isn't the case for the u take it for a few weeks, but the length us guys would take it for it is ). So yes def wean it down over a few weeks! When u wean it, ur body slowly gets used to making its own so when u stop its ready to make its own.

Dildoos-my appt is 16tj so not long. I'll know for certain that my tubes are open and I have no scarring then (pleaseeeeee let it be a good appt with no bad news ppplllleeeeasesseeeee!)

Night girls, I've not slept all week and I hope I finally get some kip tonight!

Tryingno1 Fri 06-Feb-15 23:02:36

Hula I basically wrote the exact same post as u but the most long winded version ever! Haha.

Smidge001 Fri 06-Feb-15 23:20:57

Thanks Hula and Trying, that makes total sense. I will do as I'm told and stop second guessing my specialist! grin

Hopender Sat 07-Feb-15 08:18:00

Just thought I'd weigh in on the waiting a cycle thing too from a few posts back. I had two of my miscarriages back to back without AF in between and I think I would definitely wait a cycle in that situation again. I developed really bad anxiety after having two so close together. I eventually got it under control and got on top of everything but it was a pretty miserable time. As much as I thought I was fine to go for it immediately, I think leaving it for one cycle would have given my head a little bit of time to recover.
Off to see Dr S today. Think it is my last appointment. Moon face is still with me unfortunately but feeling more myself after coming off the pred. Last cyclogest soon too.
Think this new thread is absolutely going to bring everyone lots of luck!

Hopender Sat 07-Feb-15 08:30:20

Meant to also say welcome Smidge! I've just finished tapering the pred and I'm convinced taking it has made the difference in this pregnancy after seven losses. Very best of luck!

Tryingno1 Sat 07-Feb-15 09:14:37

Wow hope! Such wonderful news! So happy for u, congrats smile

Snoopysimaginaryfriend Sat 07-Feb-15 12:10:24

Hello ladies. I don't know if any of you remember me but I gatecrashed your last thread to ask about my thyroid.
I went to see Dr Shehata in January after my miscarriage in December and he was great, he didn't push me to have a whole raft of tests but listened to my concerns about my thyroid which he tested and was happy that shouldn't cause a problem. He prescribed cyclogest 400mg once a day from when I get a bfp and advised that taking 75mcg of aspirin would definitely not cause a miscarriage.

Fast forward to 3rd February and I get a bfp and start the cyclogest. I'm not sure how long my cycles are. I came off the pill in sept and got a bfp 33days later. I got Af 33 days after my erpc which started jan 4th so going by that Af should have been due yesterday. I tested yesterdy morning and got a fainter line than before, cue panic attacks and hysterics but after three tests later in the day that were definitely positive I calmed down a bit.

Dr s has advised I stay on the cyclogest as tests tend to be all over the place at the very start of a pregnancy.

I guess what I'm really worried about is the cyclogest masking an early miscarriage. I'm not psychologically strong enough to keep testing (I'm going to ask for counselling) and I was just wondering if any of you had any experience of this. I know it's not a very high dose so hopefully if it was going to happen it would just happen naturally wouldn't it?

I know this is off topic but you were all so kind and helpful the last time I posted and you are the most knowledgable people around.

Tryingno1 Sat 07-Feb-15 12:46:22

Hi snoopy.
Firstly congrats on the bfp. It's so stressful isn't it?
Hpt varies depending on how concentrated ur wee is-so it can look darker or lighter. I think it's too hard to know at this stage. A few of us have been on cyclogest and miscarried before (infact 3 of us recently and me 7 months ago) and it didn't mask it for very long. We all spotted within a few days. So, keep going with it and either way u will know soon. I was worried about the same and weeks passing and I wouldn't know. But within a few days I spotted. As did the other girls on this thread.
I'm sorry ur going through this, but keep postive and hopeful, that will help the bean too! Fingers crossed for u. hpt are not that reliable at this stage x

Snoopysimaginaryfriend Sat 07-Feb-15 12:54:20

Oh tryingno1 I'm so sorry to hear you've had a bad time recently. I often lurk around this thread because you're all so smart and I really think I've learnt a lot from you guys.

To be honest that is exactly the answer I was looking for. What really blindsided me before was that I had no symptoms of miscarriage and the baby just didn't have a heart beat on the scan. I can relax a bit knowing that it will still happen if it's going to and that I'm doing all I can.

It is so scary and I wish you all the best for the future, you're all wonderful people and you've really helped me.

Tryingno1 Sat 07-Feb-15 12:59:02

I know missed miscarriages are the worst. I've had 2 and . I had no idea there was a problem in my first missed miscarriage as I was vomiting that morning and 9 weeks..they r very cruel. (Although I had one miscarriage before that wasn't a missed one so I knew it was over st away)
But in summary, the cyclogest won't mask it for long. It will become apparent which may its going soon. And I hope it's the right way! All the best x

Tryingno1 Sat 07-Feb-15 12:59:31

Ps don't think we are smart(well not me) we are women obsessed! Hah

Snoopysimaginaryfriend Sat 07-Feb-15 14:40:23

Thanks trying. I'm not going to do anymore tests, the last three yesterday were clearly positive so I'm just going to hurt myself if I am constantly checking.

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