Immune/NK issues - aka Pred Thread no. 22!

@LKM1 I feel your history and mine are very similar! Don't feel angry about not getting HSG because that wouldn't have changed much.

My doctor said ectopic pregnancy in ivf in general to all is slightly higher (only by 2%) in the sense the tube can pick the embryo up. However I think in your case, since you are bypassing your tubes entirely that's causing the implantation there to begin, chance of your tube picking up is as low as for anyone else if that makes sense? Same applies to me. But I have also learnt to live with the idea that no matter what the odds are, just be prepared for it. And take early measures when possible.

You are so right, as if getting pregnant is not hard enough, there are these next few steps to unlock.

Oh another thing about Dr S not responding, contact his office and really plead with them, Lorna or Sara, to arrange the appointment and the fact that you are at risk of ectopic. That might raise a flag as an emergency situation. And call everyday if you can!

Nixwix is the chance of ectopic with ivf higher than the natural risk I have now? Having one ectopic means you have a 15% chance of it happening again. Now I’ve had another I believe it’s higher again!!x

Yes my ectopic was 5 months after a 10 week mmc.but I sensed something wasn’t right, I actually dreamt it to do went to the doctor and then for an early scan, I had a 3 cm mass in my right tube. They said I was 8 weeks, it didn’t add up at all with my dates, I think I was 6, but maybe it was twins, I’ve lost twins before. It was a very bad couple of years, I was so hopeful after such a long time off to heal that this year would start well, so meh that it’s started like this! Ido feel angry after an ectopic to not have had tubes tested. We had been trying for 3 years and were about to be referred for infertility but then we got pregnant and needed to have 3 losses etc etc, you all know the drill from there

My levels were 2300 yesterday, because of the ectopic my doctor wanted bloods straight away, they went from 42-530-2300 and when they’re that high they expect to see something in the scan. There was nothing?! That’s a new one for me... something else to add to the tick list!

Sunshineblonde1 yes my husbands urine test was fine and he has a scrotum scan, everything was normal. There’s were a lot of damaged sperm, Shehata said that if the red damaged ones made it to the egg I would miscarry, we have an awful lot of hurdles! Getting pregnant, it being in the right place, a strong sperm, a good egg, nk cells... it’s quite over whelming!!

I’ve stolled taking my blood thinners and vitamins, progesterone because they can encourage the actooic to grow, where my body might dissolve t if it’s not being encouraged to do otherwise, hard decision to make.x

@LKM1 hi love, welcome to this thread and sorry you went through ectopic. I know what it's like to go through it. Worst thing was i didn't even know I was pg as I hadn't missed my monthly. I kept having stabbing pains and had to be rushed to hospital at 2 am. I was apparently 6 weeks but according to my calculation I think about 8. I had emergency surgery and my world turned upside down. Esp cause the ectopic happened within 4 months of my MMC. The tube had ruptured and I had severe internal bleeding. In hindsight I was too naive to think it was some sort of gas pain. Last year I had the HSG done to see if my other tube is working fine but the thing with tubes is (according to my Dr) the issues could be very microscopic.

Anyway, I think 5 weeks is a bit early for detecting a sac no? I would assume 6 weeks... either way, you should really insist on being monitored very closely by your doctor or the EPU. Have you had bloods taken to monitor your HCG? And about pred - you are supposed to wean off, again ask your doc..

With ivf the risk of ectopic is slightly higher but it's also very unlikely as they put the embryo in the uterus directly. In fact I have been having sharp twinges from my functioning tube side so my clinic called me in to check if everything is ok. But it's way too early... so I'm a bit nervous too. Don't feel disheartened, you are 33 and young!

@LKM1 hey hunni so sorry you are going through the mill at the moment. Big love and hugs. Are you definitely sure its an ectopic? Have you given Dr Shehata's reception a call and left a message, the nurses should ring back within 24 hours. I too find responses to emails can be slower. I am sorry this is turning into a shit journey, but I have great hope for you. We will all definitely get there one way or another. Whether its Dr S, IVF or even Donor! The blessing is, you are not at the end of the road in the slightest. There are still options!! If its any consolation my friend TTC for 5 years to no avail, had 2 x IVF which failed, got pregnant suddenly naturally that miscarried but now she is pregnant and due in a few months against all odds! I wouldnt personally wean off the Pred until I definitely knew it was ectopic? I think it's anything over 10 -14 days and you need to wean off but i would wait to see what the nurses say. My other half's sperm needed improving too, he's on the anti-oxidants, the urine analysis came back normal. Keep strong x

DaniMERL I did think in the last thread everyone had positives. It does hurt I’m sorry you felt that. But as you know that doesn’t always lead to a healthy baby. I have no living children, and my 6th pregnancy is ectopic, again....! Feeling tired of the journey and the cost of travelling to london for treatment etc, very disheartened. But wishing everyone else well, hope you get a positive soon and feel the hope again xx

Netwix, I had an ectopic last March. We didn’t try tried for the rest of the year as we were having referrals and trying to get answers. We started our Shehata plan in December and we fell pregnanct this month, we are ‘lucky’ to get pregnancy so quickly. We’ve been trying for over 5 years and for 3 we were infertile then all of a sudden we get pregnant and lost every few months...

I went for an early scan yesterday should be nearly 5 weeks, they couldn’t see anything- anywhere, not even a sack, so they suspect another ectopic...my levels are rising as they should and I have morning sickness, sore boobs, no pain, no bleeding etc, as I always do. What’s next?! I’ve now had 2 ectopic and 4 losses. I kept my tube last time, but what’s the point in keeping it if it’s so damaged! This will happen time and time again, I’m 33! I’ve never had the other tube checked either, I asked doctors and consultants and no one thought it necessary, maybe they will now.

My husbands sperm wasn’t great when we had the sperm comet test done, so now trying to sort the next plan, is ivf as option. It just feels that Shehatas plan isn’t going to have a chance to work if it never makes it to my uterus... anyways, hope you’re all ok and have a good weekend. I woke feeling very flat and have the mother in law visiting so trying to put on a smile. No one knows what’s happening, we don’t bother telling people any more.

Also I emailed Shehatas office last week they aren’t very good at responding, I’ve stopped all vitamins so I’m not encouraging the ectopic to progress, but should I cold turkey the pred or ween it down? I’ve been on it now for 22 days, not too long, does anyone know?

Sorry this is long! X

@Sunshineblonde1 @HappyApple05
Thank you for your words of comfort and the logical line of reasoning. I have to say I am so glad I wrote here. You guys are right, gotta have faith and do my best... @Sunshineblonde1 How are you getting on? Good to know your Dr is supportive of you being with Dr S in parallel. I am not telling my Dr cause I fear he will care less after that. Haha.
And @HappyApple05 Happy boinking! Fun times 😉

@Sunshineblonde1 Why IVF- we were trying naturally after the removal of my left tube due to the ectopic in April 18 and wasn't get the BFP. I knew sth wasn't right cause both the times I was pg naturally, they were on first tries. Upon further testing post surgery I found out I developed the thyroid anti bodies. I was still told that I could conceive naturally by other doctors even though I had one tube and the ab. Tbh I wasn't getting the right advice, I was also out of UK then. Not many are aware of reproductive immunology. My DH and I both wanted a baby so we thought let's try till Dec, if nth then, IVF it is in the new year. The ivf dr I am with now at CRGH, is brilliant, tested everything and immediately put me on levothyroxine. And a plan. On speaking to Dr S recently he assured me I was on the right track, with added amendments but he also said he wished he saw me earlier, would have done some things differently. But here I am and can't really think in retrospect so going forward keeping fingers crossed and having faith!

@DaniMERL Welcome! Please don't lose hope! The bright side is you can get pregnant, it's now about making healthy babies and making them stick. Please keep trying. Are you on supplements? The others are right, the process after the BFP is just as terrifying.

@Widdendream77 @Megan234 welcome and congrats on the BFP, nice to know we are on the pred game together. I haven't been feeling the insomnia but my DH tells me my face is a bit rounder and I do feel hungry a lot!

Lots of love to all

Hi all,
Can I join? I’ve been chatting to ladies on thread 21 recently!
@sunshineblone1 thank you for adding me
Quick history:
4 miscarriages.
I’ve been with Mr S sine June18 and the last miscarriage was under his care. The pregnancy was tested for chromosomal and genetic abnormalities but all came back normal (sorry not so positive story). Now he put me on pred as well as hydroxychloroquine. I found out last Wednesday that I’m pregnant, but it was very unexpected because my hCG levels were tested 8 dpo and it was negative and I was 100% sure that I wasn't pregnant.
I’ve been taking pred for 4 days now and the only side effect is insomnia. I’m having intralipids on Monday if the pregnancy test is still positive. Sending lots of baby dust to everyone xx

Awww @HappyHappy05 that’s so cute, how old is your son? And I’m so glad I’m not the only one with the windy pops! Wasn’t sure if it was the Pred or the Cyclogest (or the cats at first 😂) so perhaps it’s the Pred. I’m getting the major sweats too 🤪. I’m sticky to gulping the feckers down in one so it’s out the way. The earlier we take it the less impact on sleep.

Happy weekend everyone xoxo

@Megan234 come join x

Hey @Widdendream77 and a big fat Pred infused WELCOME!! You’ve come to the right place here 😄 And huge congratulations on your BFP! That’s awesome news. Everything crossed for this little bean. It’s all a bit surreal isn’t it! I’ve just started the Pred two days ago though have been taking the cyclogest since ovulation. I’ve found they give me wind eeks!!! Not good. But hopefully it’ll all be worth it. Am going to take another pregnancy test in a few days as can’t quite believe it. I’m so glad you have joined in the thread and look forward to hearing your updates. Best of luck starting the Pred x

Hey @DaniMERL glad you found your way over 😃 we all know a BFP doesn’t necessarily mean it’ll go to term, so don’t feel left behind. It’ll happen for everyone in one way or another in its own time. What we want is the good, healthy sticky ones, it just seems we are a group have to suffer losses on the journey to that. We are all determined, strong ladies on a mission. There is no set path. Sometimes it’s good to have a little ‘forced’ break from TTC (I.e. with the hydroxy break). It’s easy to lose positivity in the process. Hopefully come March you body will be well rested and up for the next round. Sending hugs 💐 x

Hi all,
Going to join in here although been merrily chatting away on thread 21 recently!

Quick history:
5 yr old DD born in 2013, no issues
Started TTC for no 2 in 2016. 12 wk scan revealed no heartbeat. Had D&C twice.
3 more early losses between then and Summer 2018. Had surgery each time. All NHS tests have revealed nothing except for 1 chromosomal defect (only able to do genetic testing for 1 of my losses so don’t know about others).
Saw Mr S and put on High plan in July 2018.
Got BFP in Dec 2018 on cycle 5.
6 week scan on 2 Jan revealed nothing at all. No evidence of a baby and started bleeding 2 days later.
Now been moved to complex plan and will start superOvulation but have to wait until March for the Hydroxy to take effect.

Sooooo... feeling positive but super frustrated that we now have to wait and all I’m reading is loads of BFP news which is fantastic and so happy for people but also feeling so left behind and like I will be the only person this doesn’t work for!

Hello ladies, I’m going to join in if that’s ok. I’m 41 and had recurrent miscarriages over the last three+ years trying to conceive number two. Had tests at local rmc and also went to Coventry where I was found to have complex uterine nkcells ie low on first biopsy and high on second. Been trying for 6 cycles since and just got my bfp yesterday. So I’ve started the cyclogest I got from prof Quenby and Brosens and been to gp today to collect the Prednisolone and lansoprazole to protect my stomach. My regime is going to be cyclogest 200mg day and night TIL 12 weeks and pred 20 mg til 10 weeks then down to 10mg one week then 5mg last week. As I’ve only just picked up the pred I’m going to hang on and take it first thing tomorrow. Fingers crossed for all of us. Xx

Whoops the coffee emoji didn't work lol! Here we go

@HappyApple05 I love your logical voice of reason, really helps put things into perspective.

And I am only envious of your boink fest ! I have a vague memory of those times hehe! I am too tired for much after work and dinner most days grrr, hence we are mostly weekend bunnies! I think you will be safe doing it every other day as sperm do last and this will ensure the best swimmers climb Mount Everest .

Re: The Pred I have been chucking them down with my breakfast around 8AM. If i get problems sleeping I may eat them earlier. I take them in one foul swoop! I wasn't really told how to take them just that it needed to be with breakfast? I presumed all in one lol!!! What were you advised?

I interchange between the keyboard and phone depending on whether I am out and about.

Here is a biscuit to go with the coffee [coffee] .

Hello @NixWix and welcome hun!! So sorry you find yourself here but you are in good company and we are here to support each other on our journey's. Firstly congrats on your BFP yesterday, everything crossed for your next test!! With regards to the Pred fears I don't think there is a single lady who has seen Dr S or used the steriods who hasn't gone through the same worries/fears/dread/mental torment/anxiety's over the side effects. But what is reassuring is that people have been using this protocol for so many years and oddles of heathy babies have been born. You are in very good hands with Dr S and he will monitor everything and pick up on any anomalies. We kind of have to put our eggs in his basket and put our faith in it, and leave the science to the experts (I don't even think they know why exactly it works, but the success rates speak for themselves!). Hell I have resisted the steriods up until the point of getting a BFP line two days ago so have only just reluctantly started on the protocol. But I am doing it as I will only regret it and look back and say 'what if' if I didn't. If this one doesn't stick then it will be down to chromosomes or such like or perhaps a ropey old egg or sperm - but you dont have that worry with IVF . I guess in my warbling way I hope you will find comfort that you are not alone and everyone has had the same battles with the Pred protocol and making peace with it. I wouldn't worry about the 5mg difference at all!! It really isn't a high dose. I have a friend who has to take 500mg!!! (not for fertility and only in the short term). I am on the complex plan and will wean off at 12 weeks. I think that's the same for everyone. Re: Harming the fetus, there is so much that is unknown about what potentially could and couldn't harm the fetus but the fact that there aren't 100's of Dr S's previous patients up in arms about birth defects speaks absolute volumes!!! I think if anything it is our immune system and adrenals and bones that take the hit - but then a normal pregnancy could do that too without the steriods! Just be kind to yourself, eat well, exercise lightly and keep an eye on any side effects and report them back if you feel they are doing you harm. There are other options to the Pred.

Keep us posted how you get on!!

If you dont mind me asking, how come you decided on IVF this round? It sounds like you have a very switched on DR!? Where is he based? My Dr is unfortunately not a specialist in the fertility side but is very supportive of my journey with Dr S and is not overly concerned with the pred during pregnancy. I trust him implicitly so that gives me some comfort that he is on board with it too.

Big hugs x

Hi! I'd like to join!
Firstly congratulations to all who are getting BFPs! Exciting!

Secondly, I am a bit different in the sense I opted for IVF as I have had one MMC and an ectopic through natural conception last year.

A few months after my surgery in April, I found out I had high thyroid anti bodies that were positive only after the removal of my left Fallopian tube. My Dr after egg collection has put me on 20 mg pred and intra Lipids.

I wanted to get a second opinion so I went to see Dr S and he upped my pred to 25 mg, omneprezole and high folic acid and the others remain the same - clexane, progesterone etc.

I did get a BFP last night 7 days after my embryo transfer but it could be my trigger shot. Will test again next week..

I am feeling a little nervous with upping the pred. I have been assured that it's completely safe but there's always that chance of harm to the fetus and that makes me anxious. When has everyone else been advised to wean off? And any words of comfort for someone anxious like me?

@LKM1 hey! And welcome over! Will tag the rest in so hopefully they can migrate over 😃

@HappyApple05 you really made me chuckle with your coffee cup emoji 🙊 Thank you for your good wishes and hugs. It’s such early days, I’ve never had to test this early before! Am on day 2 of the Pred 🤞

Re: boink fest holy smokes!!! I don’t think I would have it in me to do 7 days + on the trot. You go girl!! 🐎We do Day 12,14 and 16 and it’s worked the last two times first round. So I stick to that method. Plus I think any more and I’d have to physically throttle the swimmers out of DH tee hee! I have no idea when I actually ovulate - I got the static smiler on Day 16 so my rational was to cover a few days before and after that window as sperm should last a few days. Dr S recommended that DH ejaculates the night before I am due to ovulate and then on the day put it inside me for want of a better expression in order to get the best swimmers? He did that this time. It’s normal not to ovulate a few months a year so maybe you just didn’t last month? I don’t think I actually ovulated in Dec but we didn’t really put much effort into strategic boinking either then x

I’m just joining the new group, hello all.x