Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

My GP did the ANA because they suspected lupus but the ANA came back low titre positive +100 so unlikely.
I'm glad this lock down isn't effecting the clinic closing.
I will see what Dr S says next week I'm ready to get the ball rolling whatever he decides
Good luck in the rest of your pregnancy xx

@KtAgs

My GP did the ANA because they suspected lupus but the ANA came back low titre positive +100 so unlikely.
I'm glad this lock down isn't effecting the clinic closing.
I will see what Dr S says next week I'm ready to get the ball rolling whatever he decides
Good luck in the rest of your pregnancy xx

@Eeviee I’m so sorry about your news. I’ve been checking in all day hoping you’d have some good news. Take care of yourself over the next few days, it truly is a heartbreaking rollercoaster.
I was on clexane when under my NHS consultant so for all of my 5 mc’s but Mr S hasn’t added it to my plan. No test that would require clexane has ever come back positive for me, I think it was given to me as a precaution and so I thought more positively each time. If that makes sense.
I can’t help with the bleeding as each of my mcs were missed ones so I found out on a scan, stopped the clexane and then had medical management a few days later. I hope it settles down quickly for you so you can get back home to your partner!! Here if/when you need us xx

@LaurenAB94 This is my second month of trying on the treatment. I am a bit concerned with spending too much on ovulation intralipids so if it doesnt work these next two cycles might ask to be put on the superovulation.
I'm convinced I have sjrogren's syndrome and been referred to the rheumatologist but with Covid nothing is happening atm. Hydroxy relieved my joint pains completely. So that was a bonus.

Oh @Eeviee I am so truly sorry to hear that, I was thinking of you all day and wishing for good news. To have such a high followed by such a low in such little time is unbelievably cruel. I hope you are ok 💐

@Lalaifa I hope you get you BFP this month and get some answers from the NHS too.
Yeah I think I might ask for the super ovulation program if I need intralipids from ovulation as I don't ovulate every month anyway.
I'll see what answers he has for me next week xx

@Eeviee I'm so sorry to hear your awful news. That's heartbreaking. I was on Clexane for my last miscarriage, which was a missed miscarriage (but I found out pretty quickly as it was an IVF pregnancy and they monitor you all the time). They told me to stop taking it straight away, but they did say that Clexane leaves your body pretty quickly (I think after about 24 hours), whereas aspirin takes a lot longer. Hopefully you can go home soon. Thinking of you. x

@Eeviee I'm so sorry to hear your awful news. That's heartbreaking. I was on Clexane for my last miscarriage, which was a missed miscarriage (but I found out pretty quickly as it was an IVF pregnancy and they monitor you all the time). They told me to stop taking it straight away, but they did say that Clexane leaves your body pretty quickly (I think after about 24 hours), whereas aspirin takes a lot longer. Hopefully you can go home soon. Thinking of you. x

I’m so sorry 💔 @Eeviee take care of yourself xxx

Hi @LaurenAB94 I also just had loading dose of Hydroxy and I have Intralipids at 4,8,12,16 wks,
and Cyclogest x2 daily.
I’m currently 10wks and fell the 3rd month of TTC,

Not sure who asked I can’t find the message about have local scans for 6 & 10 wks? I had planned to do this myself but Dr S likes to see you for your 10wk so you can have blood test etc ready for your 12wk scan. Hope that helps. X

@LRL12 thank you for the information this is really helpful. Congratulations on your pregnancy xx

@LRL12 congratulations! Your plan is the same as mine so 🤞🏻 it works as well for me.
Starting the cyclogest tonight and then the dreaded waiting game to test. It was me that was asking about the 6/10 week scan. I think I’m feeling more guilty about having people coming with me (even though they are more than happy to), do trying to find ways around it. As others have said tho, Im sure when it comes to it I’ll want the reassurance of seeing Mr S. Thanks for answering 😊

Thanks @Jellystar23 and @LaurenAB94
Sorry @Jellystar23 I saw your message and then when I looked back could find it again, I went for me 8wk and I have my 10wk tomorrow etc I didn’t realise I would need more blood test done (by choice) so that’s why I need to go again tomorrow other wise I may have looked for somewhere more local.
I’ve had my mum come and my sister my husband was able to come last time but he’s away again now so it’s mums turn again tomorrow ☺️
Good luck this month fingers crossed for you x

Hi everyone. I’m hoping to join this thread for some advice/supper please? I’ve lurked for a while but been to nervous to post! Sorry if this is long...

So my story is one healthy pregnancy in 2016. Then in 2018 I had a MMC at 20 weeks where the baby measured only about 14 weeks. Had full post mortem and was told she was ‘healthy’ so that it was just bad luck and try again.
We tried again and had another MMC at 12 weeks where baby measured about right for gestation. This time the hospital did recurrent miscarriage tests on me and nothing came up so told us to try again but with aspirin and progesterone.
So we tried again and this time had at MMC at 20 weeks where the baby measured 17 weeks all babies genetically perfect.

I’ve been on the waiting list for Tommy’s in Manchester for over a year and have had two cancelled appointments due to Covid. Now that I’ve been doing more research I feel like, even if the Tommy’s appointment comes through, that I should get testing with Dr S too because I want to cover all possibilities. I can’t go through another loss, I just wouldn’t cope. But I need to try again one more time - I can’t have these past 2 years of sadness with no happy ending!

So I’m thinking about making my first appointment with Dr S. We really can’t afford it, and it would be an 8 hour round trip for an appointment. But I feel like I have to at least have the testing, and then if he finds a problem we can beg/steal/borrow some money. Am I out of my mind doing this??

Sending you all so much love and strength. The only positive of baby loss has been the amazing strong people I’ve met on the journey.

Hi @Tinpo and so sorry you find yourself here.

Dr S is pricey that’s true but unfortunately women like us are left with no other option as the NHS just won’t properly fund the necessary research or treatment. I would say personally that it’s the best money you could spend (assuming you have an immune system issue like high/active NK cells although it sounds probable from what you’ve said) so if you can find a way, I would personally do it.

I don’t necessarily want to advocate getting into debt but if you are going to, then think about long term interest free credit cards if you’re good with money/organised. Have a look at moneysavingexpert.com as they always highlight the best deals at the current time. You can then borrow enough to cover the treatment (by paying on that credit card each time) and have, say, 2-3 years to pay it off. You then need to make sure you pay more than the minimum each month to pay it off, or you can usually transfer the balance to a new card and then have another chunk of time to pay it off (but not guaranteed you’d be accepted for a new card so best is to pay off the original card on time).

Anyway sorry if went off on one about money advice, it’s just an idea if you are struggling. Good luck whatever you decide! X

@Tinpo I should add - I’m now worrying you will get into debt that you can’t afford. I don’t know your circumstances and I’m not a financial advisor, so wouldn’t want to have that effect, you must decide yourself. That route has just helped us in the past - but we made sure we could pay it all off before any interest kicked in.

Also, it may be that you can be referred to Dr S or another similar person (I think there is a lady called Quenby I’ve read about elsewhere on Dr Google who provides similar treatment but haven’t researched it fully myself)? Other ladies here may well know more about this route, I’m not sure (we went straight to private as I’m older and don’t have the luxury of time!).

Good luck xx

@Tinpo I’m so sorry for your heartbreaking losses. I have had two late losses, and personally for me seeing Mr S was the best decision I’ve made, if not just for his confidence and reassurance that he will help. Having said that, it is expensive as he decides what tests/treatments you need so there isn’t even a way to budget it.
You could ask the NHS to re-run all the recurrent mc tests because he will accept them if completed within the last 3 months. That would save you some money but all dependent on whether your consultant would allow this.
Prof Quenby and Prof Bronsens run an implantation clinic in Coventry. This had reopened a few weeks ago but I’m unsure if the current lockdown has affected it. They check for uterine natural killer cells (Mr S looks at peripheral so their work is different) but I think it’s £540 for a uterine biopsy and consult. If you google Coventry implantation clinic you’ll find the details of a lady called Kerri Gerahty and she will give you all the information. The treatment they offer is prednisolone, not sure if you have tried this yet but if not it may be worth a try as atleast you know the full cost upfront.
I’m sorry you find yourself in this impossible place but so glad you’ve taken the leap to message. This forum has really helped me through my last mc and encouraged me to take the step to see Mr S, something 12 months ago I wouldn’t have considered as I was convinced it was just bad luck. Take care x

Hi @Rebecca9876 and thank you!

Don’t worry - I won’t go getting into any crazy debt! We’re both self employed so obviously the whole pandemic has made our financial situation a bit ropey. I’m going to speak to my parents about maybe borrowing a bit if needed, and I’ve been putting a little bit of money aside since last year which was meant to cover my maternity leave, but obviously I won’t make it to a maternity leave if I don’t get treatment, so I think I’ll use that to cover most of the initial consultation and tests.
It’s all a bit stressful and this pandemic is making everything worse, but for i just keep thinking that for once in a lifetime life changing thing then what’s a few thousand pounds really??

The nhs referrals are a good call but I know nobody does exactly what Dr S does so I feel like I really want to see him. If he doesn’t find any NK problems then I’ll probably just wait for my Tommy’s appointment.

@Tinpo that is exactly what I thought about the costs vs once in a lifetime chance! @Jellystar23 has also given some brilliant and informative advice for you. I’m really hoping that you find some solutions soon and have success. And well done for joining this group - I was also a lurker (!) until recently but have found it so helpful and supportive. I felt so alone and isolated during my miscarriages but I honestly think we’re all amazing for handling what we’ve been/are going through and how we’re able to nonetheless still help one another x

Hi everyone,

I haven't RTFT but I wondered if I could ask a question.

I'm having my third mc now, and for this pregnancy I was put on lots of medication to help support it, nothing diagnosed yet so it was all 'just in case'. I was put on 20mg of prednisolone. If I did have an undiagnosed autoimmune disease, would 20mg of pred be enough, or is almost pointless?

Hi @Daffodil21
Sorry that your going through this. I can’t offer much advice as I was only on 15mg pred for my last mc but I know Mr S normally prescribes 25mg. This however was reduced to 15mg of pred during Covid. So you were receiving a higher dose than Mr S would have prescribed.
I think the NHS only considers pred as a potential treatment. Mr S’s plan has a few different treatment options. Hope this helps.

@Tinpo I'm so sorry for your losses I completely understand I've had 4 miscarriages and the NHS wasn't doing anything. I looked at going to Tommy's but decided that I would rather travel to see Dr S as he treats each person holistically and I feel he would try treatment the NHS wouldn't. I really hope you manage to have your first appointment with him soon I've got mine next week.

@Daffodil21 it depends what kind of autoimmune condition it is and the severity of it. I know Dr S offers , preds, hydroxychloroquine and intralipids. Some people just need one medication others need several I would ring the clinic your with and ask them even if they just reassure you that your on the right treatment it'll stop you worrying

Hello!

I haven't posted in a long time, but i kept reading you. Congratulations to all the pregnant ladies!

In 1 week will be our first appointment for IVF (uclh). The consultant always told us try to fall pregnant until this appointment arrives. I had my 5th loss in July (despite the full treatment of aspirin, heparin, progesterone and cie.), followed by a surgery that was planned in feb but cancelled due to covid. After that, i couldnt fall pregnant anymore, until last month.

I am therefore pregnant for the 6th time in 18 months. Before starting IVF.
The anxiety is high! I managed to convince the doc to track my hcg level, because the 800mg prog would mask a mc, and because i dont want to have the surprise of seeing a non evolutive pregnancy at the 6.5 week scan.

HCG is good according to him, on the lower limit, but doubling when it has to double, apparently. So i will try to trust him and relax, and to acknowledge the fact that each pregnancy is different, and so are the normal hcg levels.

I dont have much to say. I have read lots of positive stories recently, and maybe this is my turn to succeed, although a part of me is very pessimistic...

Take care of you all xxx

S.

Hi @Tinpo I am so sorry for your losses ❤️ I have just seen Dr S for the first time and would say if you can afford it, it is something to consider, partly because the turnaround for tests is so quick and because he focuses on pre conception and giving you support. I've been under a Tommy's recurrent miscarriage clinic for a year and actually had 2 losses under their care, but because I don't have sticky blood or anything else they've tested for (not much) they've offered nothing, just said try again which we don't feel comfortable to do without a plan in place. For reference, I paid £2500 for the initial appointment and the blood tests. We've decided not to do dna fragmentation for now (was an additional £450 but could be up to £1000 depending on treatment required). But there will obviously be follow up costs for the plan and as @Rebecca9876 says, it's difficult to know what they will be until I've had my results appointment.

I have privately seen professor Brosens for the implantation clinic biopsy and my uterine nk cells are normal, so I was prescribed progesterone but that didn't help in my most recent pregnancy. I am due to see Professor Quenby at the end of the month but it's just a telephone consultation so nothing will happen quickly there. The referral via my GP didn't take too long for her, about 8 weeks I think. But as she's conducting research, there's no guarantee that she'd give treatment, I might get the placebo, so I think I'm still going with Dr S as I can hopefully start sooner rather than later, with a plan in place. I do understand the worry though ❤️ it's a lot of money for no guarantee, but being on here and knowing it is working for so many who have had multiple losses like us helps give me hope.

I'm so sorry for your losses @Daffodil21 ❤️

I've been feeling really off these last few days, very anxious. I had my appointment yesterday and I don't know if it's because I have researched so much but I just went blank when he said do you have any questions, I kind of feel like I know what he's testing for and why. I did ask a few things but I just came away feeling a bit flat (not because of him, he's really nice) dh even said he's nicer than you said he was going to be! 😂
I'm worried I've also got retained tissue from my last loss, something doesn't feel right, so my GP has prescribed antibiotics for this week.

I'm now taking aspirin, pregnancy vitamins plus omega 3 and max strength vitamin D. I was just taking folic acid and a low dose of vitamin D before.