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

@DaniMERL that is wonderful news. Whatever the future might hold right now you are on track with a heartbeat ❤️ Enjoy the moment 😀

Good point about YouTube, I forgot about that, thanks! 😀

@chickjen I bet you could find something on YouTube - there was one for the SuperO trigger shot which was far better than the attempt that was made by Shehata’s receptionist.

@HappyApple05 haven’t the clinic advised on this based on your scans?

@ginandtonicformeplease I am on Hydroxycloriquine (the anti malaria med) as well as Pred as my first pregnancy on the Shehata programme failed. I know a number of ladies who have had their rainbow babies with this combination or just the Hydroxy on it’s own.

I managed to get a scan today due to my mental state. We seemed to see everything in the right place with a heartbeat although they were a bit vague on measurements. I have to go back in a week. Feeling a bit more peaceful although I know there’s a lot to get through.

@HappyApple05 I would say as long as you are sure of your dates I would stick to LMP as better to err on the safe side. Or maybe somewhere halfway between the 2?
Glad you are out of the loo for 5 minutes 😂
@ginandtonicformeplease I think it probably is the same as DNA fragmentation but they claim they are the best. 🤔

Actually I have a question too if I may. I am taking my humira injection tonight, it's a pen, the instructions seem pretty straight forward but the pharmacy were adamant I should have had some training from the clinic. Has anyone used an injection pen? Is it as straight forward as it seems? Any tips?

Is spermcomet the same as the DNA sperm fragmentation? My understanding of that (and I may be wrong!) was that the embryos were unlikely to have got to blastocyst stage and then survived to over 8 weeks if there was a problem with the sperm itself. I'm currently reading Professor Regan's book on miscarriages and from what I understand it's much more likely to be an autoimmune issue with me, judging by the stage I got to both times.

I hadn't heard of Angela Heap, but thank you for the recommendation. We did see a fertility nutritionist in the run up to starting IVF to get my eggs and DH's sperm in the healthiest place possible - it's her advice that DH is following now.

The tests I'm going for are some I haven't had before such as factor V Leiden, MTFHR gene, lupus anticoagulant. They also test chromosomes as well - there's a list of about 15 tests they run.

Logically I know we're in a good position as we have 9 blastocysts left in the freezer. At the moment I'm just finding it difficult to think of myself as lucky!

@ginandtonicformeplease we are here for the ups and most importantly we are here for the downs ❤️ Our individual circumstances may be different but I'm sure the stress and worry and the constant need to feel you are doing SOMETHING is shared 😥
I know what you mean about staying pregnant, when you think of all the factors that are involved in getting pregnant and growing a baby it is amazing it happens at all, but it does, literally billions of times, we just have to trust that one day it will be our turn

Also what extra testing is this Gynaecology place offering? @ginandtonicformeplease

Hmm I see your dilemma @ginandtonicformeplease. Having just reminded myself of your TTC journey I can see that the focus needs to be on the MFI mainly but also that your NK cells may be making it tricky to hold onto any BFP. Like @chickjen mentions there are other routes alternative to the Pred which @DaniMERL and Chickjen have pursued. So that’s an option. What have the specialists said regarding your DH MFI? My DP was put on powerful antioxidants to improve his spermcomet results. I think a combination of factors helped there. Have you looked into epigenetics? The Fertility Nutrionist I mentioned before covers genetic panel testing. Google her - Angela Heap. She is often the last port of call for failed IVF and unexplained fertility patients and has great success rates. She offers free initial Skype chat / phone call and is very helpful. I considered her alongside DR S when I began my journey.

Oh darling it broke my heart to read about how your feeling about your weight gain. Please don’t be hard on yourself. Your body has been going through an incredible journey, prepping for pregnancy with the treatment and medicine let alone dealing with all these difficult emotions. Give that body a big hug from us all here !! It’s done a marvellous job of taking all that on. Look in the mirror and know that you have this under control. Acknowledge that this is the biggest you’ll be and that with the healthy diet, yoga and exercise you will soon notice that you will feel better about your changing shape. I did a yoga retreat last May and it changed my entire outlook on this whole journey. It will bring you the peace you deserve my love. Maybe ditch the scales for now and just focus on loving those curves and just being healthy 😘 this whole process is a huge assault on the body and mind we must show gratitude to ourselves and be forgiving of the extra weight after all there is good reason for it being there it’s not like we’ve just been greedy for months, the meds do reek havoc ! 💪💪 xx

@Chickjen Thanks for the message, just feeling very down today about everything. I have had a look at Mr S, and my plan B if nothing is found by the dr I'm booked in to see is to take him all the results of the tests I've had to review. When we started this journey we were told by the NHS fertility nurse that it was unexplained infertility - as such we decided to keep trying naturally for a while before we had a private consultation (no IVF funding where I am). At the first private consultation the doctor looked at our test results and said he didn't know why we'd been told unexplained, I was very unlikely to get pregnant naturally as it was MFI. After that - a waste of a year - I always think getting a second opinion is good.

I just always thought getting pregnant would be the difficult part, not staying pregnant! I'm really glad I've found you all, although I wish we weren't all in this position

@Ginandtonicformeplease I think you are far from the end of the road it is just a question of what to try next without breaking the bank. I still think it's worth a consultation fee to see if there is anything stronger than vitamins they can give your OH, if you can cut out the ivf that has got to lessen the burden. There are other immune issues and treatments other than NK cells and pred/intralipids too. I am about to start a course of humira and DaniMERL took hydroxychloroquine to name just 2. Have you thought of trying MrS?
I have not heard of the clinic you mention but if they look at a broad range of options it could be a good place to start to identify an area to concentrate on. And the spa retreat sounds amazing 😍
In the meantime you have us too ❤️

You're all right that it is a lonely path. IVF is lonely, and then miscarriages is even lonelier. I'm quite a private person so hardly anyone knows everything we've been through.

Has anyone heard of London Gynaecology, run out of the Portland? I'm booked in there for some recurrent miscarriage tests at the beginning of June. I think my consultant at the IVF clinic has done all his usual tests, and I just want a second opinion - and I don't really want to go to another fertility clinic, but one that specialises in women's health, if that makes sense.

I'm then booking myself into a yoga and detox retreat at the beginning of July. I've started dieting already, but I weighed myself today for the first time since my booking in appointment for my last pregnancy and I almost cried - I've put on more than a stone since then. Unfortunately I'm a comfort eater. I'd already put on a load of weight due to the steroids, so I've plenty to lose!

DH is religiously taking his vitamins and drinking his beetroot juice. I don't think he really knows what to say emotionally but give him something practical to do and he'll do it!

I just can't help but think that there's not really anything more that they can do for me - I've had the steroids, heparin, intralipids, but it still ended in MMC.

My clinic offered a free counselling session when we originally signed up that we never took up. I was considering seeing if it was still on offer - it's almost a year since it was originally offered but I didn't feel unneeded it then. On their website it's time limited, but we've spent so much money with them I'll be really pissed off if they refuse!

Sorry for the long ramble, and congratulations to everyone who's had a success!

@Chilliandlime and @Thumbellini correction: it was a lonely path but now you have us 😀❤️ I felt very lonely and isolated too but now I have found you all who understand what it's like I feel far more able to talk about weather and what's on tv etc with people i don't want to share with. And agree 100% about the uncertainty 😀
@KittyKatSmile one hurdle down and onto the next at full speed 🎉 I hope it works out you can keep your holiday!
@NixWix so lovely to hear you are doing well, as KittyKatSmile said it really helps us you and Sunshineblonde1 are here giving us hope ❤️
@DaniMERL I have everything crossed for you 🍀 I feel we are similar with the anxiety and multiple chemicals. I really hope this is the one for you 🍀🍀 one thing that helped me was trying not to think of anything for one minute, it sounds silly but its actually really difficult when you are worrying. I don't think I've ever managed it during the day but at night it really helps get back to sleep ❤️
Hi @Chocapic he is Mr Shehata in London/Epsom and specialises in pregnancy loss caused by immune issues.

Ladies - may I ask who Dr S is? I’m new here and have seen his/her name mentioned a few times. Thank you!

@kittykatsmile yes I go regularly but as this pregnancy was a bit more of a surprise than usual I just had an appointment already made for this Friday. Looking back I should have contacted her and tried to go sooner but the anxiety really crept up on me!

@HappyApple05 I personally am delighted that you are being so sick; that's a good sign (and apparently you then get a good baby. I'm sure that's science!) Even if it means we don't see so much of you. Sending much love.

@DaniMERL sorry to hear you're so anxious. @Sunshineblonde1 sounds spot on as usual (she's so wise!). Have you tried acupuncture? I am generally against anything like that (I'm an accountant so uber rational....!) but it's really helped me in the past. Remember that we are all here for you xx

@Nixwix, yay she's back! And with twinges! So happy to have you with us. It's so nice to have happy news to dilute the general misery (that I bring!)

@Chilliandlime yes, my friend is on that group so there's a fair chance you know her already! She said it's been invaluable to her. She put me onto another Facebook group but I don't like it as much as I like you ladies. For some reason the lack of anonymity really freaks me out!
(And treatment = IVF. OH decided he didn't want to try again after 4 miscarriages in a year so I'm going it alone. In all senses!)

Sending you all lots of love ladies x

Thank you @sunshineblonde1 xx

Sorry to hear your anxiety is through the roof @daniMERL it is a very very anxious time, the first trimester is the hardest on that tho the second and third bring a whole new set of worries 🥴 but at least then it’s our the miscarriage zone. Thinking of you. 💐 You just have to put trust in the universe now that everything will be ok. The one thing I kept telling myself is that there was nothing I could do to change any outcome. It was already written in the stars at point of conception. Breath deep and trust and surround yourself with love and support. All will be well. Have faith. I have everything crossed for you keep us up to date x

Hi all,
Things seem okay here. I have my 6 wk nhs scan on weds next week. I have symptoms and got to 3+ on a clearblue indicator. Anxiety levels are really v v bad. I’m struggling quite a lot and am still feeling negative about the outcome. This is the hardest yet.
Sending love to you all x

I hope everyone on this thread finds that being here makes the journey much less lonely 💗💐🥰 x

Hey @nixwix I was thinking of you the other day and hoping all was well 😀💐 Snap! I’ve got twinges, tugging and pulling but no ‘kicks’ yet but the nurses said as it’s our first that it won’t happen until 20Weeks plus as our stomach muscles aren’t ‘shot to pieces’ ....yet 🤪 With second baby it can start as early as 14 weeks. I’m doing really well thanks hunni! Just started pregnancy yoga which is really informative and is helping with foot cramps and baby bump bonding 💗 feels weird not taking Cyclogest anymore! And so glad my appetite is back to normal.
@HappyApple05 I can’t tell you how pleased I was to hear that all is going well still and hope to hear from you soon when the nausea subsides, fingers crossed within a few weeks 😘🤞

Re: aspirin, that’s interesting, euch we are damned if we do, damned if we don’t in pregnancy by the sounds! It’s meant to improve blood flow to the baby .... all I know is every specialist I’ve seen has advised it so that’s all we can do right! We have to have faith that what they are instructing us is correct and faith that one way or another we will all get the babies we are working towards. We are all strong determined women who find ourselves here, women who don’t just settle for being told ‘you just have to try again’ without researching into why and what we can do to help things along. The path isn’t easy but the end goal will all be the same, I know that for sure 😘 X

Pred 25 mg instead of 20mg*

Hello everyone and all those new on here! Good luck to all trying the protocol and so happy to hear positive news from some of you. Sorry I have not been very active, have been traveling and have my mum is visiting us from thousands of miles away, keeping me preoccupied. After the 12 week scan I have been significantly more relaxed. 16 week scan at Dr S went well too. I have been told the blood flow is a little low, nothing alarming so have been prescribed aspirin. I do feel some tugging and pulling in my belly but no kicks yet.

Someone asked about IVF and protocol - yes I underwent ivf (due to a previous ectopic and having one tube) and continued with the meds prescribed by my ivf doctor which mostly coincided with Dr S plan. Except he asked me to amended two of them - pred of 25 mg instead of 29 and progesterone to be taken till 16 week instead of 14.

What's the update from you @Sunshineblonde1 ? So happy to hear about you @HappyApple05 !! @Chickjen @KittyKatSmile @DaniMERL how are you guys??? Xxxxxx

@HappyApple05 so lovely to hear things are going so well. Hope your nausea calms soon.
@KittyKatSmile I'm so sorry your treatment has been delayed and you may have to cancel a holiday, I'm sorry I tried reading back but didn't manage to catch what it was for?
I agree on the dealing with/drinking more! By the way does your friend know about the closed Ashermans group on FB (only use FB for that these days)? There's an international one and a UK and Ireland one, have learnt so much from that x

Welcome new ladies. I definitely think it's true that the uncertainty is the hardest thing. I was saying that to a friend (with Asherman's, actually) at the weekend: if you told me it would happen in 3 years, I'd deal with that (and drink a lot more ).

My treatment has been delayed. Not by much but it's so annoying and also means I may have to cancel a holiday I had planned with my lovely Mummy....

On the plus side, that bastard panel is done now. Onto the next challenge my stupid job has to throw at me

@thumbellini know exactly what you mean about the uncertainty. I really hope the genetic testing provides some answers. You are strong and will get there x