Immune/ NK cells - Pred threat 27

[LaurenAB94]

@Bambii @Daffodil21 @Eeviee @Everhopeful35 @farfromperfect82 @Eeviee @Everhopeful35 @Hazlet2 @farfromperfect82 @HoldingOn2Hope @Jellystar23 @KtAgs @Lalaifa @LookingforAnswers86 @Marabouchoc @LRL12 @MrsMargot @Naticle @NessyT91 @NessyT91 @NICK7nick7 @rainwillmaketheflowersgrow @Rebecca9876 @Sophfr17 @Tinpo @VenusStarr @Wheresmyrainbow @Whyisthistakingsolong

@Daffodil21 thank you so much for taking the time to share this info. I really appreciate it! Will definitely get the book and look into what’s on your list. X

OMFG just got a BFP using first response. Hoping not a dud test will try again later with clear blue. Was just doing it to get it out the way as was feeling really down convinced it hasn’t worked. Totally freaking out now just cried my eyes out with relief here’s hoping it makes it 🤞🤞🤞

For anyone who wants to know the protocol I used:
10mg predisolone for high thyroid antibodies
Vitamin D 25ug
Folic Acid 400ug
Magnesium and Zinc tablets every other day or when I remember!
Brazil nuts for selenium at least 2 per day
Progesterone (utrogestan) suppositories 3x day
Oestrogen tablets (progynova) 2mg 3x day
Hay fever tablets cetirizine 1x day

The only thing different from last time was the predisolone steroid and hay fever tablets, think the steroid may have really made the difference. No pregnancy symptoms in 2ww just my usual PMS ones - mood swings & itching minus the usual boob pain although this time around did have some very slight cramps occasionally.

@InvisibleDreamer everything crossed for you!!!!

@NImama I also had a couple of Brazil nuts every day like @InvisibleDreamer. I also never needed up taking the NAC.

Also just to add to that list: 5mg prednisolone twice per day from 2dpo, and 400mg progesterone twice per day from 2dpo. I only tried the pred and progesterone one cycle, and I was just lucky to catch that month (I had hopes as it was the month following mc where apparently you're more fertile. I seem to be as happened twice that way for me).

@VenusStarr I’m so sorry to read your update. I’m really hoping it’s not and news but I also know that gut feeling we get when we know what’s happening and that is impossible to ignore. Sending you massive hugs.

Thanks everyone for your reassurance that I’m totally normal. I really want to be pleased for her but I’m struggling. No thousands of pounds spent on tests and treatments or worry over chromosome abnormalities. She actually said she didn’t care about the screening test. I get that for downs but I now have my head filled with far worse possibilities! Her 20 week scan was great apparently. If only I could even imagine getting that far or feeling able to relax.

Sorry everyone, I’m really struggling today. I can’t stop thinking about how my bump would look now and about the little boy I’d be carrying. For some reason this loss has been the hardest for me. My body actually seemed to be doing what it needed to but had produced an abnormal egg. I’m questioning whether even with all the treatments in the world, it will ever happen for us.

@Badlydrawngirly sending you a big hug. It’s really brutal. I’m having a similar day myself! No energy to do much, flat mood and just losing hope! But I think for me it’s that hormone drop you get after a loss. Loss was on Friday. Like you I’m also questioning if anything will ever work. I think it’s just so traumatic and so tiring isn’t it. Hope you have support? My husband is a total rock and I have a friend who has been through this which helps. I was at the park today with my son and all I could see was the new babies and the bumps! I was fighting tears and did not enjoy it at all 😑

Here to listen if you want to chat more! Just be really gentle on yourself and give yourself time. We are so tough! We will get through it xx

Hi ladies. I’ve been a bit of a lurker on this thread for a while. I have 1 DD 4yo, then a loss at 24 weeks, followed by 3 early miscarriages. First Mc was a missed Mc at 10 weeks (growth stopped at 8 weeks), the rest were natural around 6 weeks. I went private (I’m in NI) and was prescribed, clexane, progesterone, pred 20mg, aspirin and vit D to take from ovulation. Well we had an accident and I ended up getting pregnant before my period following the last Mc. Twigged on about 13dpo when I was dizzy and nausea in the morning. HCG tests were taken and continued to rise so confirmed new pregnancy . Started the meds straight away. Had a scan on Wednesday which confirmed heartbeat and baby measured 6w5+ so in line with my dates.
This is my first pregnancy on steroids. Usually I am very very sick/nauseous but this time I get some waves of nausea late in the evening but I’m largely fine and I cannot control my anxiety! The Dr said it could be due to the pred easing my nausea but I cannot shake the feeling that the baby has died and it’s another missed miscarriage! Has anyone found their nausea/symptoms were different when on pred? TIA

Hi @CherryO88 welcome to the group. It’s lovely to have another person from N Ireland here! You’ve been through so much. I’m so sorry for your losses. I’m hoping this is your lucky one! Are you by any chance under the care of Dr D H? Yes, I’ve read a lot about how pred can mask all pregnancy symptoms. Now I’m not sure if this was the case with my last preg or if my hormones were just so low that I didn’t have symptoms. When is your next scan? I found the only way to pass the weeks was to tell myself - I am pregnant now and everything else is out of my control. It is so tough! X

@CherryO88 I was on pred for this pregnancy (currently 30 weeks). I haven't feel nauseous or thrown up once. I don't have a successful pregnancy to compare it to though!

@NImama hi! Yes that is who I’m currently under, are you also? I had come to the end of the road with the NHS really, they weren’t prepared to discuss possible immuno reasons. I found him very open and easy to deal with so far! He’s off next week so my next scan isn’t until the 16th and honestly I don’t know how I’ll be able to get there atm. My anxiety is so bad that I’m thinking if I lose this one I actually don’t think I can do this to myself again.

@Daffodil21 congratulations on making 30 weeks! I think I would be settled but I just know how awful I felt before that anything less than that feels like something is wrong!

@CherryO88 yes I’m seeing him too. My last appt was just before he went on holiday. I was on thyroxin, vit d, folic, clexane injections, progesterone (though I’ve since noticed he gave me a lower dose than what most people are on), prednisolone and pregnacare. Did you see C.B on the NHS? Female doctor and supposed to be very good. I’m not sure though if I should bother waiting to see her (it’ll be 6 months if a waiting list I’m sure) or just try to get a referral to one of the well known English consultants or see them privately (somehow!!£££) Seems that NI doesn’t test for half the things that are tested for in England.

I know. I totally understand. It’s so hard! The fear is constant. But one day at a time. Try to do what you can to minimise stress from elsewhere if possible. If you work, could you maybe take some time off? Out for a walk every day etc. Pred can mask symptoms! X

@NImama I’ve just scrolled back and seen you’ve had recent loss. I’m so sorry. How are you doing? It’s so devastating. Has Dr H suggested why the meds didn’t work, or what to do next?
I’ve just booked a scan on the Lisburn rd for wed. I just need to know what’s going on at this point!
Haven’t heard of C.B. I’m southern trust and while the dr I was under was lovely, i wasn’t prepared to keep having mc after mc without trying something new. I’ve also looked into Dr S but I don’t know how feasible it is logistically for the intralipid drips etc, esp travelling back and forth in covid times. Plus the cost!

Thanks @CherryO88 I’m doing ok. But it’s my 4th so I’m just exhausted and not sure how long I can keep doing this. My last appt with him was a scan with bad news and he sort of wanted to let me process that before talking about next steps. Even though there and then I wanted to know what options I had for the next time which is nuts. But I had been spotting so I knew I was losing the pregnancy before my appt.

He mentioned seeing CB on NHS, or two English doctors but didn’t get so far as discussing if it would be a referral or private. I’ve to go back and see him in 6 weeks.

I was on another mumsnet group and one NI woman who had been on this journey for years was warning women about wasting too much time on nhs or DH in Northern Ireland. She went on to see Dr S in England and said the investigations and treatments were worlds ahead of what we have in NI. So I think I need to find a way to get over to see Dr S.

Glad you got a scan! Try to stay calm if at all possible and let us know how you get on! Everything crossed for you. X

@NImama it feels relentless and it’s so hard to know what way to turn. I would be the exact same as you though, once I had my 5th loss in March I booked the private appointment for 2 days later because I needed a plan. Maybe take the next 6 weeks as a mental break? Try to heal emotionally and not think about TTC, then go again in 6 weeks depending on what he says?
I had read that woman’s posts before I went to see Dr H and he actually brought her up at my first appointment (I think). I asked him about hydroxy and he told me that hes only used it once to no success but that he had one patient who he had a falling out with, went to Dr S who prescribed hydroxy and she fell pregnant and stayed pregnant. I assumed it was that lady.
Being in NI feels like such a raw deal when it comes to this doesn’t it. So behind everywhere else! I’m come across some shocking attitudes too in the EPU. Last time I knew I was MC and the nurse basically blamed me for it for being anxious- all you ladies are too worried and focused on it, relax and it’ll happen. Could’ve just about punched her but sat and nodded 🙄

@CherryO88 that’s so interesting about hydroxy. Yea. I think that’s what I’ll do. A total break for 6 weeks maybe 8 weeks. Get us both on supplements now and then go and see him. If he is vague or hasn’t got a plan for me I’m honestly tempted to find a way to get over and see Dr S. Not sure if you’ve looked up Dr S but the list of tests he offers is extensive and really what you would expect after numerous losses! Because at the end of the day, if I’m honest with myself, I’ll likely try once or twice more at the most.

Yes. Unfortunately EPU I have always felt have made things more stressful for me not less. Each time I try to give them the benefit of the doubt but sadly they just prove themselves again and again to be insensitive and very unhelpful. I’ve found them to be argumentative over nothing, dismissive and on one occasion during my second loss and while spotting, they actually told me I probably just had a gastro bug to just rest up and wait a week. Unbelievable. This time round, I quickly got comfortable with not involving them. They’re just too difficult to deal with.

Hope you are doing ok! X

Ladies has anyone had the Covid vaccine while still taking Pred but not pregnant? Thanks in advance x

@NIMama - thank you so much and I’m so sorry for your loss. It’s just exhausting isn’t it? I’ve had 4 miscarriages and 3 ectopics now and after the most recent miscarriage I’m not being treated badly at work. I made the mistake of being honest with my boss about it and the fact that I was going to need IVF. I’ve taken today off as sick as I am just physically and mentally broken. I have an autoimmune disease and they’ve been told they need to make reasonable adjustments and the stress of it all is making me ill.

@VenusStarr - how are you doing? Xx

@NImama I had my first vacc 10 days before transfer after starting on pred. Had no problems I think the only risk is that you might not get such a good immune response because of the pred so it may not be as effective.

Hi everyone, thanks for asking @Badlydrawngirly I'm not great. Clinic confirmed it's a biochemical pregnancy 😢 hcg has dropped again. I've been cramping and spotting since last night. Even though I was expecting it, it's floored me and just been really upset and got a pain in my chest 💔 can't believe we have lost 5 pregnancies. I've messaged the nurses at crp, I don't suppose there's much to say and we've got a review with Dr S on 21st June.

Xx

@VenusStarr I’m so sorry. I think even if you are expecting it you can’t help but be absolutely devastated. It is so exhausting! Xx

@InvisibleDreamer thanks! That’s good to know. I think I’ll arrange to get mine xx

@VenusStarr I'm so so sorry. Even if youre expecting it it's still an awful, awful shock to have it confirmed. Sending a big hug your way xx

@VenusStarr I’m so sorry. Even when you’re expecting it there’s always a tiny hope for our miracle.

I’m sending you massive hugs. Even though I’ve been there, there are no words to describe the pain. It’s just impossibly cruel. Xx

@VenusStarr - I'm so devastated for you. Really sorry you're going through this. Hoping you can get some answers in your appointment with Dr S on the 21st. Xx

@VenusStarr I am heartbroken for you. We have also had 5 losses. It's so dam cruel! I know there is nothing I can say to make you feel any better and that you need time to process the shock of your news. Just know there are so many ladies here to support you ❤

@treesall I'm glad you are feeling better after your appointment. I feel the same way about the intralipids. I also feel under more pressure to get pregnant quickly due to the cost and distance to travel for appointments, feel like there is more at stake this time. Also feel like if this doesn't work what do we do then.

Xx

@CherryO88 good luck for your scan tomorrow! 🙏🏻🙌🏻